Newly Diagnosed
653 Members
This online group serves the members of our arthritis community who are newly diagnosed and are adjusting to living with arthritis. We invite those who are looking for support, education, robust programming, expert speakers, and connection to join us and meet others who understand.
Live Yes! Connect Groups offer connections, education, and empowerment. Adults living with arthritis from across the country come together online for professional- and volunteer-led sessions on topics, as well as fun group activities.
We offer a place of understanding and encouragement for both people living with arthritis and their loved ones. Group participants become self-advocates, develop self-management skills, and learn how to not just survive life with arthritis but to thrive.
Upcoming Events
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Thursday, December 12th, 20247:30 PM EST1h 30m
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Virtual Event
- 15 people attending
Newly Diagnosed Connect Group virtual meeting – Holiday Social
The Newly Diagnosed Connect Group meets on the second Thursday each month from 7:30–9:00 PM ET, 6:30–8:00 PM CT, 5:30–7:00 PM MT, 4:30–6:00 PM PT.
In December, we will take a break from our series of educational presentations to socialize. Wear your favorite holiday attire (ugly sweaters encouraged), bring your favorite festive beverage, and we will have some fun and exchange tips for how best to enjoy the winter holidays while living with arthritis. If you need help figuring out how to modify your usual holiday activities, we’ll help you brainstorm possible modifications.
After our presentation, there will be time to connect with others. Friends, family, and care partners are always welcome to join meetings.
We respect privacy and confidentiality and do not record our online meetings.
Registration is required to receive the Zoom link to participate via video or phone. Being on video is not required, nor is having a Zoom account. A confirmation email with the Zoom link will be sent upon registration. If you do not receive the registration confirmation, please check your spam folder. You can also log in by clicking the Join Now button on the Connect Group event page. Please plan to log in a few minutes early.
We look forward to seeing you soon!
In December, we will take a break from our series of educational presentations to socialize. Wear your favorite holiday attire (ugly sweaters encouraged), bring your favorite festive beverage, and we will have some fun and exchange tips for how best to enjoy the winter holidays while living with arthritis. If you need help figuring out how to modify your usual holiday activities, we’ll help you brainstorm possible modifications.
After our presentation, there will be time to connect with others. Friends, family, and care partners are always welcome to join meetings.
We respect privacy and confidentiality and do not record our online meetings.
Registration is required to receive the Zoom link to participate via video or phone. Being on video is not required, nor is having a Zoom account. A confirmation email with the Zoom link will be sent upon registration. If you do not receive the registration confirmation, please check your spam folder. You can also log in by clicking the Join Now button on the Connect Group event page. Please plan to log in a few minutes early.
We look forward to seeing you soon!
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Thursday, January 9th, 20257:30 PM EST1h 30m
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Virtual Event
- 4 people attending
Newly Diagnosed Connect Group virtual meeting – Self-Management: Lifestyle Factors
The Newly Diagnosed Connect Group meets on the second Thursday each month from 7:30 – 9:00 PM ET, 6:30 – 8:00 PM CT, 5:30 – 7:00 PM MT, 4:30 – 6:00 PM PT. This is the fourth in our series of six educational sessions.
This session focuses on lifestyle factors that can significantly affect arthritis symptoms. Participants will learn about the role of diet, exercise, and sleep in managing arthritis. We'll provide practical tips for incorporating these elements into daily life.
We respect privacy and confidentiality and do not record our online meetings.
Registration is required to receive the Zoom link to participate via video or phone. Being on video is not required, nor is having a Zoom account. A confirmation email with the Zoom link will be sent upon registration. If you do not receive the registration confirmation, please check your spam folder. Please plan to log in a few minutes early.
We look forward to seeing you soon!
This session focuses on lifestyle factors that can significantly affect arthritis symptoms. Participants will learn about the role of diet, exercise, and sleep in managing arthritis. We'll provide practical tips for incorporating these elements into daily life.
We respect privacy and confidentiality and do not record our online meetings.
Registration is required to receive the Zoom link to participate via video or phone. Being on video is not required, nor is having a Zoom account. A confirmation email with the Zoom link will be sent upon registration. If you do not receive the registration confirmation, please check your spam folder. Please plan to log in a few minutes early.
We look forward to seeing you soon!
- Event List
Arthritis Foundation Event
-
Thursday, December 12th, 20247:30 PM EST1h 30m
-
Virtual Event
- 15 people attending
Newly Diagnosed Connect Group virtual meeting – Holiday Social
The Newly Diagnosed Connect Group meets on the second Thursday each month from 7:30–9:00 PM ET, 6:30–8:00 PM CT, 5:30–7:00 PM MT, 4:30–6:00 PM PT.
In December, we will take a break from our series of educational presentations to socialize. Wear your favorite holiday attire (ugly sweaters encouraged), bring your favorite festive beverage, and we will have some fun and exchange tips for how best to enjoy the winter holidays while living with arthritis. If you need help figuring out how to modify your usual holiday activities, we’ll help you brainstorm possible modifications.
After our presentation, there will be time to connect with others. Friends, family, and care partners are always welcome to join meetings.
We respect privacy and confidentiality and do not record our online meetings.
Registration is required to receive the Zoom link to participate via video or phone. Being on video is not required, nor is having a Zoom account. A confirmation email with the Zoom link will be sent upon registration. If you do not receive the registration confirmation, please check your spam folder. You can also log in by clicking the Join Now button on the Connect Group event page. Please plan to log in a few minutes early.
We look forward to seeing you soon!
In December, we will take a break from our series of educational presentations to socialize. Wear your favorite holiday attire (ugly sweaters encouraged), bring your favorite festive beverage, and we will have some fun and exchange tips for how best to enjoy the winter holidays while living with arthritis. If you need help figuring out how to modify your usual holiday activities, we’ll help you brainstorm possible modifications.
After our presentation, there will be time to connect with others. Friends, family, and care partners are always welcome to join meetings.
We respect privacy and confidentiality and do not record our online meetings.
Registration is required to receive the Zoom link to participate via video or phone. Being on video is not required, nor is having a Zoom account. A confirmation email with the Zoom link will be sent upon registration. If you do not receive the registration confirmation, please check your spam folder. You can also log in by clicking the Join Now button on the Connect Group event page. Please plan to log in a few minutes early.
We look forward to seeing you soon!
-
Thursday, January 9th, 20257:30 PM EST1h 30m
-
Virtual Event
- 4 people attending
Newly Diagnosed Connect Group virtual meeting – Self-Management: Lifestyle Factors
The Newly Diagnosed Connect Group meets on the second Thursday each month from 7:30 – 9:00 PM ET, 6:30 – 8:00 PM CT, 5:30 – 7:00 PM MT, 4:30 – 6:00 PM PT. This is the fourth in our series of six educational sessions.
This session focuses on lifestyle factors that can significantly affect arthritis symptoms. Participants will learn about the role of diet, exercise, and sleep in managing arthritis. We'll provide practical tips for incorporating these elements into daily life.
We respect privacy and confidentiality and do not record our online meetings.
Registration is required to receive the Zoom link to participate via video or phone. Being on video is not required, nor is having a Zoom account. A confirmation email with the Zoom link will be sent upon registration. If you do not receive the registration confirmation, please check your spam folder. Please plan to log in a few minutes early.
We look forward to seeing you soon!
This session focuses on lifestyle factors that can significantly affect arthritis symptoms. Participants will learn about the role of diet, exercise, and sleep in managing arthritis. We'll provide practical tips for incorporating these elements into daily life.
We respect privacy and confidentiality and do not record our online meetings.
Registration is required to receive the Zoom link to participate via video or phone. Being on video is not required, nor is having a Zoom account. A confirmation email with the Zoom link will be sent upon registration. If you do not receive the registration confirmation, please check your spam folder. Please plan to log in a few minutes early.
We look forward to seeing you soon!
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Connect Groups - National - Newly Diagnosed
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Comments [75]
If you need some help navigating the holidays, you can download a helpful booklet at https://www.arthritis.org/liveyes/premium/42-holiday-tips.
Recently diagnosed with Psoriatic Arthritis. Having a hard time with medication also. I was told it would take 8 weeks to see if what I was on would really work. I'm still on steroids, and getting some support from the spouse but not sure he understands that when I have a good day it doesn't mean I've turned a corner.
Hi Carol, thank you for reaching out. Our sincerest apologies at the delay in my response...Lorena has been managing the group by herself. I understand your frustration with your spouse, he might be coping with some of his own stuff regarding your diagnosis and may not be sure how to give his support. Family members are always welcome to our groups - invite him to the next one where he'll hear others share their experiences. And yes, it can take time for meds to work. Have you checked out the Psoriatic Arthritis Connect Group? https://connectgroups.arthritis.org/groups/psoriatic-arthritis. Let me know if I can help in any way, Elena
Carol,
I'm waiting for a formal diagnosis (been on waitlists at multiple rheumatologist's offices for months), but am fairly certain it's RA. I'm experiencing the same thing with my husband. I think he's in denial but also just struggling with the fact that he isn't personally experiencing what I am so when I look "ok" from the outside, he thinks everything is fine. He actually said to me last night that he thinks one day I'll wake up and it will just be gone.
I think I've realized that this is not just scary/shocking/difficult for me, but it's changing his outlook on what the rest of our lives look like together. I'm trying to be forgiving with him, but know what you feel like when you just want your person to get it, and they don't and may never.
recently diagnosed in early 2024, still trying to find the right medication regimen. feels a bit like a rollercoaster still dealing with the unpredictable flares. would be great to hear some positive treatment stories if there are any! also, does anyone else struggle with tendonitis as part of their symptoms and if so, what has been working for you?
thank you
Hi Rajni,
It took me years to find the right combination of medications to control my RA, and sometimes, especially with biologics, a medication will work for a while and then your body will adjust to it and it loses its effectiveness and you have to start trying meds again. Fortunately, there are a lot of different medications to try. With persistence and a bit of luck, hopefully you will find a combination that works well for you.
I do have tendonitis in several places. I have found physical therapy and massage helpful, as well as topical diclofenac ointment to reduce the inflammation. Depending on which tendon is involved, a physical or occupational therapist might be able to show you how to brace the area to reduce strain, and if your ankle is involved, a podiatrist can help you find the best shoes for your concerns. You should of course discuss any potential treatments with your doctor.
Hello Jamie, our sincerest apologies for the delay in responding, Lorena has been managing the group by herself. Arthritis.org is a great place to learn about all the different types of arthritis, or treatments, or exercise, for example. You will see the magnifying glass in the upper right corner. Are you coming to the Newly Diagnosed events? 11/14 is medication management and my co-facilitator Lorena is very well-versed in the meds. Please remember we are volunteers and do not give advice, but we can share our experiences though. Please reach out through the members link on the Newly Diagnosed page; you can click on the facilitators and send us a direct message. Best regards, Elena Marciano
Hello Jamie, our sincerest apologies for the delay in responding, Lorena has been managing the group by herself. Arthritis.org is a great place to learn about all the different types of arthritis, or treatments, or exercise, for example. You will see the magnifying glass in the upper right corner. Are you coming to the Newly Diagnosed events? 11/14 is medication management and my co-facilitator Lorena is very well-versed in the meds. Please remember we are volunteers and do not give advice, but we can share our experiences though. Please reach out through the members link on the Newly Diagnosed page; you can click on the facilitators and send us a direct message. Best regards, Elena Marciano
Hello Jamie, our sincerest apologies for the delay in responding, Lorena has been managing the group by herself. Arthritis.org is a great place to learn about all the different types of arthritis, or treatments, or exercise, for example. You will see the magnifying glass in the upper right corner. Are you coming to the Newly Diagnosed events? 11/14 is medication management and my co-facilitator Lorena is very well-versed in the meds. Please remember we are volunteers and do not give advice, but we can share our experiences though. Please reach out through the members link on the Newly Diagnosed page; you can click on the facilitators and send us a direct message. Best regards, Elena Marciano
Hi Jamie, our most sincerest apologies in such a delayed reponse...Lorena has been handing the group by herself. Have you been attending the Newly Diagnosed events? This month 11/14/24, is Medication Management my co-facilitator Lorena is very well-versed in the meds. Please remember we are volunteers and do not give advice, but we can share our experiences though. Please reach out through the members link on the Newly Diagnosed page; you can click on the facilitators and send us a direct message. Arthritis.org is an excellent resource. On the home page, you'll see the magnifying glass in the upper right hand corner and you can search for information. Let me knwo if I can help further, best regards, Elena Marciano
Hello Rajni, our sincerest apologies for the delay in responding, Lorena has been managing the group by herself. Arthritis.org is a great place to learn about all the different types of arthritis. You will see the magnifying glass in the upper right corner. This is what I found for tendinitis https://www.arthritis.org/search/results?query=tendonitis. Finding the right med combo can take time and yes, it can feel like a rollercoaster, but give it time. Finding a doctor that's a good match is a good first step. Are you coming to the Newly Diagnosed events? 11/14 is medication management and my co-facilitator Lorena is very well-versed in the meds. Please remember we are volunteers and do not give advice, we can share our experiences though. Please reach out through the members link on the Newly Diagnosed page; you can click on the facilitators and send us a direct message. Best regards, Elena Marciano
I am newly diagnosed with fibro. I have syptems simliar to tendonitis, but it's my figers that really hurt. When they are flared up the tendons in my fingers slip and some joints actually pop out of place. I dont understand how fibro can cause "trigger finger" in random joints, in both hands. It's an actual physical symptom and not a nerve issue.
Anyone else have obvious physical disabilities blamed on fibro?
I am newly diagnosed with fibro. I have syptems simliar to tendonitis, but it's my figers that really hurt. When they are flared up the tendons in my fingers slip and some joints actually pop out of place. I dont understand how fibro can cause "trigger finger" in random joints, in both hands. It's an actual physical symptom and not a nerve issue.
Anyone else have obvious physical disabilities blamed on fibro?
I am newly diagnosed with fibro. I have syptems simliar to tendonitis, but it's my figers that really hurt. When they are flared up the tendons in my fingers slip and some joints actually pop out of place. I dont understand how fibro can cause "trigger finger" in random joints, in both hands. It's an actual physical symptom and not a nerve issue.
Anyone else have obvious physical disabilities blamed on fibro?
Not seeing a whole lot of interaction here. Im new to R.A. too. Im using embrel. I dont see a big difference really but dont.habe anyrhing to compare it to lol. Whats anyl mean? Whats tendionitis ? I say , stay away from gluten. Thats what everyone keeps telling me.
Not seeing a whole lot of interaction here. Im new to R.A. too. Im using embrel. I dont see a big difference really but dont.habe anyrhing to compare it to lol. Whats anyl mean? Whats tendionitis ? I say , stay away from gluten. Thats what everyone keeps telling me.
Not seeing a whole lot of interaction here. Im new to R.A. too. Im using embrel. I dont see a big difference really but dont.habe anyrhing to compare it to lol. Whats anyl mean? Whats tendionitis ? I say , stay away from gluten. Thats what everyone keeps telling me.
forgot to specify - recently diagnosed with RA
Hi - just diagnosed with RA - trying different meds - it's about 3 months of having pain- trying to figure it out .
CCove
hellos, does anyone have the link to the new zoom meeting room for the event currently happening?
It's postponed.
Hi, I'm a37 yr old mom of two. Diagnosed last summer after a year of on and off pain mostly in the summer after my second son. My Dr is good, I'm on methyltrexate. I just have some questions.
1. What should it feel like when my meds are effective?
2. Does anyone else peloton and what shoes do you use?
3. My biggest issue this year has been pain in my Feet. It's like daily. The meds have helped but not pain free most of the time. I just don't know if I should be expectingild pain or if I should be working toward zero pain. Like what's the tolerance I need to have?
4. Anyone else notice symptoms changing/worsening around their period? It's my week and it seems to be a trend that suddenly a couple symptoms really hit harder. My feet hurt worse this week than they have been and I was fatigued like none other Monday.
Anyway thanks for reading I'm new here and I just haven't been able to talk to anyone who has been positive or even friendly to be honest.
Hi Christina,
Your post was from a while ago, but wanted to say hello as a 36 yo mom of two, newly navigating Dx of non-radiographic Axial Spondyloarthritis. I just started a biologic- so I can't answer your question about how to tell if meds are working and am also curious about this.
I DO definitely have worsening Sx around my period and have been trying to do my own research about this. I have found some information that lower estrogen levels in your mentrual cycle or w/ menopause can worsen joint pain and/or inflammation. So that is definitely a real experience!
Hope you are finding some relief for the foot pain.
Kara
Hi Christina,
Your post was from a while ago, but wanted to say hello as a 36 yo mom of two, newly navigating Dx of non-radiographic Axial Spondyloarthritis. I just started a biologic- so I can't answer your question about how to tell if meds are working and am also curious about this.
I DO definitely have worsening Sx around my period and have been trying to do my own research about this. I have found some information that lower estrogen levels in your mentrual cycle or w/ menopause can worsen joint pain and/or inflammation. So that is definitely a real experience!
Hope you are finding some relief for the foot pain.
Kara
Hi Christina,
I'm new here. did anyone reply to you? I was prescribed the same medication you have. I'm wondering if it'll work. How long have you been on it?
Newbie here. Dxd w/RA just this week. I'm on Prednisone, tapering down to 10 mg as a result of PMR misdiagnosis. RA doc wants me on methotrexate. Has anyone been on Kevzara and is it better tolerated? Totally discussed.
Linda
Hi Christina,
Is methotrexate a life long med? I was prescribed the same thing.
Hi Linda,
I'm newly diagnosed. I was prescribed the same methotrexate. Is it a lifelong medication? It doesn't seem to be much discussion in the live connect.
Hi! Also newbie but I am on methotrexate, never kevzara but I haven't had any issues with methotrexate. A slight bit of nausea the first couple times but I started taking it at night so I don't even notice it.
I'm 68 and began having pain/stiffness in my finger joints about 2 years ago. It's now affecting my everyday life and preventing me from doing the things I love. My GP ordered lab tests and referred me to a rheumatologist, with whom I had an appointment last week. He believes I have psoriatic arthritis rather than RA - my RA factor was positive but very low. He suggested I begin taking Methotrexate (which scares me due to the side effects) and folic acid; told me to think about it and get back to him. I'd like to know what types of side effects - and the severity - others have experienced from Methotrexate, and whether those side effects gradually decreased. Any input would be helpful.
Hi Helene,
How are you? I'm newly diagnosed and was prescribed the same medications. Is it a life long medication?
I'm 21 years old and I was just diagnosed with RA. I have been having pain for several months, but I did not expect this. I was about to go to cosmetology school, but I am now worried I will not be able to work as much as I want with this condition. I am a hard worker, and I try to not let things get me down. However, I feel out of touch with myself and my age group. I feel like I cannot go out and drink with my friends. Alcohol is an inflammation trigger. I love diet drinks, but I stopped those because of artifical sweeteners. I just want to live a long healthy life. I see my great grandmother who is 92, she has probably had RA for 40 years. She is still going strong, but I can't help but think about the things I notice on her body. Huge knots on her joints, crooked knotted fingers. My fingers have already started getting bone deposits, and it's an insecurity of mine that I know is just going to grow. I don't want to be repressed, by this for life. But, it is frustrating when I can't do simple tasks because my fingers and wrist are hurting such as folding laundry, curling my hair, putting on makeup, and painting (which i love). Any suggestions?
Emily, that was great advive to Gracelyn. I will be taking that advice also. Have you taken Methotrexate? If so, please let me know the pros and cons of it. I'm newly diagnosed.
Hi Gracelyn.
Thank you for sharing a bit of what you are going through. I wanted to reach out and hopefully give you some encouragement. Getting a new diagnosis can feel like life as you know it is over and that you have to completely change your life. I was diagnosed when I was 19 and a sophomore in college so I know first hand the dread and fear of having to give up on your dreams and goals as well as feeling like you can't fit in with friends your age anymore. I would suggest that you continue seeking out cosmetology school, if possible. After you and your doctor figure out a medication that works for you, I'm sure that you will be glad that you stuck to learning a new skill and starting a career.
There are a lot of things that you can do for the inflammation and pain in your hands that are over the counter. I recommend trying compression gloves or Voltaren gel on the higher pain days. I have found that, for me, heat really helps with my pain. I also went through the process of a food sensitivity test and then an elimination diet to see if anything I was eating might be triggering my flare ups. I found out the gluten is a big trigger for me so, even though its a huge bummer, I stopped eating gluten and I have noticed a drop in inflammation.
All that being said, it is going to take some time for you and your doctor to figure out the best treatment for your situation. The best thing to do right now is be patient, stay as positive as possible, and start building healthy habits that will help your overall health. Everyone's journey is different, but we are here to help in any way we can.
Thank you for joining this connect group.
Hi Gracelyn.
Thank you for sharing a bit of what you are going through. I wanted to reach out and hopefully give you some encouragement. Getting a new diagnosis can feel like life as you know it is over and that you have to completely change your life. I was diagnosed when I was 19 and a sophomore in college so I know first hand the dread and fear of having to give up on your dreams and goals as well as feeling like you can't fit in with friends your age anymore. I would suggest that you continue seeking out cosmetology school, if possible. After you and your doctor figure out a medication that works for you, I'm sure that you will be glad that you stuck to learning a new skill and starting a career.
There are a lot of things that you can do for the inflammation and pain in your hands that are over the counter. I recommend trying compression gloves or Voltaren gel on the higher pain days. I have found that, for me, heat really helps with my pain. I also went through the process of a food sensitivity test and then an elimination diet to see if anything I was eating might be triggering my flare ups. I found out the gluten is a big trigger for me so, even though its a huge bummer, I stopped eating gluten and I have noticed a drop in inflammation.
All that being said, it is going to take some time for you and your doctor to figure out the best treatment for your situation. The best thing to do right now is be patient, stay as positive as possible, and start building healthy habits that will help your overall health. Everyone's journey is different, but we are here to help in any way we can.
Thank you for joining this connect group.
Hi,
I am newly diagnosed with AS and have the genetic marker for Psoriatic Arthritis as well. Does this group have a moderator and is it possible to have a video meeting for those of us new to this group?
I'm 47 and was just diagnosed with osteoarthritis level 4 in both my knees. I'm shocked, sad and scared. I met with a orthopedic doctor and he gave me a shot in one of my knees and it hasn't helped. He said he could put me in touch with a joint replacement surgeon which seemed extreme. I have cut out sugar, processed foods and most things that cause inflammation. I'm walking everyday and I'm counting calories so I can lose weight. I'm taking vitamins, anti inflammatory tea, collagen etc. I am constantly in pain and now can't get this diagnosis out of my head which is causing anxiety. How do people live with chronic pain? What do I do now ?
Hi Sarah,
How are you feeling now? I'm newly diagnosed with RA. I will definitely follow what you have been doing, I can't imagine a life of chronic pain.
Living with chronic pain is a day to day journey. Some days you wake up and feel ready to go and other days you wake up and feel like you just want to lay in bed all day. It sounds like you are doing a lot of good things to help with the pain and inflammation already so definitely keep it up. There are some topical creams that could be helpful with your pain if you haven't tried that yet. It's important to spend time with the people you love and to do the things that you love. Sometimes those things can feel harder with arthritis, but almost everything can be modified to fit your abilities. Communicating with your doctor as well as other people going through a similar struggle can help with understanding your diagnosis as well as the loneliness and sadness. Stay positive!
Hi,
Have you considered physical therapy? I did that for 6 weeks and my pain was much better. I wear a sleeve on my knee when exercising and that helps. Also, aquafitness classes are a nice low impact option. Hang in there!
Hi I'm Jody. I recently been diagnosed with RA and am taking methotrexate and steriods to get the pain and inflammation down. My question is do i have to stay on these meds for the rest of my life ? My Dr said yes I have to with the methotrexate but wants me off the steriods. Right now I'm taking the meds since I've been in pain since Sept 1. (Took me 3 months to see a Rheumatologist). Also what does remission mean? And what else have worked for you? I'm altering my diet, seems to help. Any information would be helpful. This just came on suddenly and I'm flummoxed. Thanks
Hi Jody,
How are you doing now? I'm newly diagnosed and I'm wondering if Methotrezate is lifelong also. It's definitely not what I would want to do.
Jody,
Remission means you are managing your symptoms and feeling better. Learning your triggers will help to limit the intensity of your flares. Usually stress, lack of sleep, diet and the weather play a big part in how much pain we are in. Keeping to a strict diet and sleep schedule will help. And allow yourself some grace when your body betrays you.
Jody,
Remission means you are managing your symptoms and feeling better. Learning your triggers will help to limit the intensity of your flares. Usually stress, lack of sleep, diet and the weather play a big part in how much pain we are in. Keeping to a strict diet and sleep schedule will help. And allow yourself some grace when your body betrays you.
My husband was diagnosed with RA/Lupus early 2023, suspects he has had this for a long time (maybe since he was in his teens actually). He is experiencing a lot of muscle wasting. Any suggestions? Thanks
Having only had minor stiffness in a couple of fingers previously, I wasn't prepared when I suddenly had stiffness in multiple fingers, my neck and shoulders, hips, and knees. I'm working with my regular MD, a chiropractor, a physical therapist, and a massage therapist. There is some improvement, but I can't get through a night's sleep without discomfort in my shoulders and upper arms. I'll leave other problems for another day.
Does anyone have a recommendation as to how I can sleep on my side (necessary due to back issues) without the pain waking me up?
Hi Bob,
I found using a body pillow makes it more comfortable to sleep on my side. Maybe a new pillow would help too. Take care.
I have found acupuncture to be very effective with stiffness and pain for arthritis I would would highly suggest it to everyone on here with arthritis.As I have tried everything and that js the only thing that has been a life changer for me on top of changing the foods I eat.
My daughter is a division 1 soccer player recently diagnosed. Trying to navigate this, find success stories and best treatment for athletes
I must be truly stupid. I had severe pain on and off for months, and then it became chronic. Almost went to the ER but managed to wait a few days because had appointment with an orthopedist. He diagnosed me upon X-ray with OA but how do I know that it is not RA? The OAs here do not prescribe adequate pain meds so I am left without recourse and trying to find a rheumatoligist but have just read that their wait times are quite long because many of them are retiring. Thanks.
I also have OA and now RA. I started with my primary and requested a blood panel that looks at inflammation markers. I eventually did see a rheumatologist and he confirmed it with a sonogram on my hands and wrists. I knew there was more going on besides the OA in my thumbs.
I also have OA and now RA. I started with my primary and requested a blood panel that looks at inflammation markers. I eventually did see a rheumatologist and he confirmed it with a sonogram on my hands and wrists. I knew there was more going on besides the OA in my thumbs.
I also have OA and now RA. I started with my primary and requested a blood panel that looks at inflammation markers. I eventually did see a rheumatologist and he confirmed it with a sonogram on my hands and wrists. I knew there was more going on besides the OA in my thumbs.
I must be truly stupid. I had severe pain on and off for months, and then it became chronic. Almost went to the ER but managed to wait a few days because had appointment with an orthopedist. He diagnosed me upon X-ray with OA but how do I know that it is not RA? The OAs here do not prescribe adequate pain meds so I am left without recourse and trying to find a rheumatoligist but have just read that their wait times are quite long because many of them are retiring. Thanks.
I have osteoarthritis. Just found our thus year.Now that it is getting cooler it has started bothering me more any ideas on how to deal with it .Here's my email address [email protected]
This is Lisa S. Joined a few days ago. Dr. Appt was yesterday and he talked me into the shot. I yelled that it hurt and cried. I feel very embarrassed. I have OA and a small tear. He gave me some Tylenol 3 which I put with 1 extra strength Tylenol. Still tossed and turned but finally feel a little rested. I was so very tired. I usually get 1 to 4 hours sleep. So we will wait to see if it starts working in about a week. Also he is putting in a referral to pT to show me what I can do at home for exercised and a nutritionalist for this OA and IBS. I want to treat it naturally. My pain level is so low. Any advice. Tried to do the chart tracking thing but could not mark anything. This in my left shoulder. Also considering CBD oil as I saw what narcotics did on my Mom. A man at the office raved about how it helped his wife in her last 4 months. Can not find anyone who takes insurance.
Lisa,
Don't feel embarrassed. The same thing happened to me this September when I had a steroid shot in my SI joint. Tears streamed down my face as I was yelling and trying to stay still. CBD is great but not covered by insurance. I'd recommend doing your homework before buying as not all CBD products are the same. Best of luck and well wishes.
Julie
Hello newly diagnosed with RA. Tried Leflunamide and it didn't set well so Rheumatologist rec Humira. Waiting to receive meds to begin.
is anyone taking any supplements to help with RA but also to help a 57 year young woman? Currently taking a multi vitamin, B12, Tumeric, Probiotic and Rostatin for high cholesterol. Trying to fine supplements that really work to help with RA but also other affects of "aging"!
My name is Laurie. I just moved to Nothern Virginia and was recently diagnosed with moderate OA in both knees. I tore the meniscus in both my right and left knees and originally thought the pain was from the tears and that my knees could be repaired. I am struggling with my diagnosis because I have knee pain throughout the day and I am not able to do many of the activities I did just a year ago. I am hoping to find others who might have some tips on how I can get back a somewhat normal routine.
Thank you,
Laurie
Hi Laurie. Sorry to read about your situation. I'm brand new to this group. I'm a high school track and cross country coach and thought I had just torn something in my knee and worse case scenario was surgery and lengthy PT. Still digesting news of osteoarthritis in addition to meniscus tears, bone swelling, and thinning cartilage.
I was fitted with an unloader knee brace and failed miserably with it. I think it was simply smarter than me and maybe I just couldn't get it adjusted right. It made my knee worse so I stopped wearing it.
I've been doing PT since Nov 20 and my knee pain is maybe 10% of what it was before I started. 4 days/week doing exercises at home for about 20 minutes working on glutes, hips, quads, and hamstring muscles. I do the exercises religiously and walk my dog at least a mile every day. I also wear a Futuro brand compression sleeve, which I have on most of the day. I think it was $18 on Amazon. I've had one for years and love it. My physical therapist highly recommends them over unloader braces.
Anyway, I read the despair in your words and thought I would share what has helped for me. I hope you've found some solutions since your September post.
Hi Laurie. Sorry to read about your situation. I'm brand new to this group. I'm a high school track and cross country coach and thought I had just torn something in my knee and worse case scenario was surgery and lengthy PT. Still digesting news of osteoarthritis in addition to meniscus tears, bone swelling, and thinning cartilage.
I was fitted with an unloader knee brace and failed miserably with it. I think it was simply smarter than me and maybe I just couldn't get it adjusted right. It made my knee worse so I stopped wearing it.
I've been doing PT since Nov 20 and my knee pain is maybe 10% of what it was before I started. 4 days/week doing exercises at home for about 20 minutes working on glutes, hips, quads, and hamstring muscles. I do the exercises religiously and walk my dog at least a mile every day. I also wear a Futuro brand compression sleeve, which I have on most of the day. I think it was $18 on Amazon. I've had one for years and love it. My physical therapist highly recommends them over unloader braces.
Anyway, I read the despair in your words and thought I would share what has helped for me. I hope you've found some solutions since your September post.
I'm in the same boat Laurie. Also in NoVA. I thought my persistent hip pain was a result of running, long days on my feet, etc. I recently had a torn labrum and the MRI showed OA in both hips. The ortho mentioned it but only recommended NSAIDs when needed. But, how do I get ahead of this so I can get back to and maintain my physical activity without making the OA worse?
I hope we can both find some answers, recommendations, and relief.
With hope,
Amanda
My MRI mentions several subchondral cysts within anterior superior osseous glenoid. Neck muscle pain befor MRI and shoulder arm pain with certain movements. Internet says associated wit OA which both Mom and Dad had. Grandma had RA. Aunt has Fibermialgia. My pain tolerance is extremely low. Still hate needles so would like other treatmens. Is CBD oil a good alternstive. I have so many questions. My name is Lisa and just looking for best options if internet is correct. I live in Cheyenne WY and I am a Christian and animal lover.
I've recently been diagnosed with osteoarthritis but my recent labs indicate Multiple Connective Tissue Disorder. Very frustrating as I cannot get another appt until Oct 5th. I am in extreme pain frequently when walking. I'm on neurotic right now and alleve. I don't feel too bad if I'm not doing g anything but once I get moving it kicks in.
Anyone here with MCTD? I feel very scared and isolated right now. The littlest thing are making me very emotional.
Hi Doreen!
I've had MCTD since 2005. Given the amount of pain you are in maybe try calling your doctor and asking them if they can prescribe anything to help the pain until your appointment. Also, ask them if they can call you if they have any cancellations. (You may have to call every week to check for cancellations depending on how busy/organized they are). I use an infrared heating pad many nights on the joints that ache. You can also google anti-inflammatory diets as some people feel a lot better once they cut out processed foods/wheat/sugar etc. Also check our connect group events and there may be topics that other groups are doing that interest you. You can join as many groups as you want and get notified of their events. Hope that helps some! Kindly, ~ Anna
Hi Doreen! My labs also said I have connective tissue disorders. I was recently diagnosed with arthritis as well!
Hi all. Good to be here. I live in Ireland but just find the US culture more expansive and positive compared to ours. So was looking for a group of minded souls who are determined that this disease will not define who we are or who we become with it, and living our best life with it as a(n albeit uninvited!) companion. Thank you.
Welcome Jill!
Hi.
I was just diagnosed w RA this Spring when I experienced my first flare-up. I was very lucky to get into a rheumatologist right away who put me on prednisone and Plaquenil. I'm still dosing down on the prednisone--finally at 7mg/qd--and am almost pain-free. I have been experiencing such fatigue it's horrible....that coupled with insomnia. I miss at least two days a week of sleep. I mean zero sleep. Some nights I don't even bother getting in bed. I've always been an insomniac, but never this bad. I've tried everything. The problem is I don't get drowsy...that feeling where your eyes can't stay open and you just need to lay down and close your eyes. Nope-not me...even after being awake for 48hrs. Has anyone else experienced extreme fatigue? Does it eventually go away? I hate not being active.
Also, I was diagnosed with severe ostoarthritis abt 7yrs ago and have had to get an annual infusion of reclast. I'm worried b/c I know prednisone is good on bones ad mine are alrady bad. Has anyone else been diagnosed w both Rheumatiod and osteoarthritis. I see my endocrinologist in a month and plan to discuss this at length w him.
Thanks for any comments. I appreciate any feedback.
Vivi, Age 63
Hello Vivi,
I'm so sorry that you're having this experience. I was formally diagnosed less than 2 weeks ago, I should have been diagnosed nearly 2 years ago but that it another story that probably is too common. In answer to your question, I too experience extreme fatigue with insomnia. At some pointt in my day I hit a wall, fall asleep for 3-3.5 hours and then I'm awake. At this point I remain in bed as long as I'm comfortable but I don't sleep well or very long.
Hi. I hope I'm in the right place.
I don't know if I have arthritis or not. Nobody in my family has had it, so I don't have any base info to go on.
But I hurt. Everywhere. An ankle pinches and gives way, an elbow can't be straighted while grasping, a shoulder aches with a sharp catch in it at certain angles, and if I turn my neck a bit too long, it's stiff to turn it back. A pinch in my wrist, so forget picking up a cast-iron skillet one handed ever again. Trips to the chiropractor help alleviate sciatica, but I've been told since around 2000 that my hips are twisted.
I am unemployed and our budget doesn't allow me to be added to my husband's insurance. I've been prescribed a couple of things that do help, but I don't have a name to call whatever it is that I have. I want to find out if I qualify for disability, but have shyed away from all of this due to an apparent stigma I notice in my family.
I came here to find out how to find out what my diagnosis is, and its severity. I'm in Texas.
Any pointers or insights would be so greatly appreciated.
Thanks
`b
Hi Brandi,
If you can manage it, I would suggest getting an MRI. For me, that was the answer to figuring out why my pain was so bad. They are super expensive in the states, so I got mine in Mexico and then brought it to my doctor.
Hope you can find an answer soon.
I am recently diagnosed with PMR Polymyalgia Rheumatica and would like to be able to contact someone else who also has this. Is there anyone else in this group, or other groups who have this?
Thanks, Jean Kaplan
Dear All - I am 55 and over the last three months, been diagnosed with arthritis but still being assessed to see what type - spondylitis has been mentioned.
my doctor says there's some link between gut health and inflammation but understanding which biomes is under research.
any experience with gut health and adatogens?
thanks!
sykvia
Hello Everyone,
It was great meeting everyone and listing to Dr. Jain's advice.
To be honest, I'm still trying to navigate my health so I can return to school. I am not sure that I have RA. One Dr. States that I do, another is not sure. I know that I have OA of my left knee, I just got a shot of Durolanr on Monday. It is supposedly a good gel.
I have changed my eating to anti-inflammatory diet by following: MyPlate.gov.
Also, practicing strength training and taking supplements.
Posting this because Dr's recommendations. Want to share this with you. Still not feeling great, seem tired allot. Is this expected?
Oh, one doctor recommended Turmeric by Meriva. What are your thoughts?
Just trying to relate my experiences to help you and gain knowledge from you. As someone said, no one understands what is going on. My family doesn't understand what is going on and I can't expect them to understand. That's why I need your all's input and support.
Hope to hear from someone!
Thanks for all,
Marcia Eyler
Hi! My name is Alyssa. I was diagnosed with degenerative disc disease in the lumbar (low back) spine recently. It was a ride getting to this point. Years of low back pain that I couldn't understand why was happening. I finally got an MRI in Mexico to help me in my findings of this disease. Navigating how to manage this now is still very new to me, being so young, i'm only 33; has been a challenge to say the least. Doctors say to help it's either the steroid shots, which I really don't want to do or manage it with diet/ exercise etc. Sometimes I have an episode just working out or bending down to get something and standing back upright takes me out for a month. I am glad I found this place to find some people who can relate!
I feel pretty alone while navigating this.
Hi Kara!
Yes, it was a relief to finally get some answers. It seems like when these things happen your on your own for the most part, which was hard for me to understand at first. But I'm glad I found this platform!
To manage flare ups I've been eating anti inflammatory foods and much as I can and have switched jogging for more low impact cardio with stretching/ some strength training. I think I need more strength training though !
How have things been going with you?
Hope all is well.
Hi Marcia,
I appreciate the offer! I have been to the local hospital before. I do stay local as well.
How is it going managing your symptoms?
I read in your post that you are changing your eating and exercising more. I've been doing the same as much as I can :)
-Alyssa
Hi Alyssa,
Sorry to hear that you are dealing with this at such an early age!
Have you thought about calling Cleveland Clinic or one of the other major hospitals? I went to Cleveland Clinic in June and was very impressed by the doctor and staff! I haven't gone back because I am trying to deal with my issues in a local level. If need be, I will go back!
I will be happy to send you the campus number.
Take care,
Marcia
Hi Alyssa! Welcome to the group. Please feel free to join us on zoom for additional support. Our next meeting is in October. In the meantime please visit: Degenerative Disc Disease | Arthritis Foundation for some tips.
Hi Alyssa! It must be a relief to have the MRI and finally be able to identify what's causing your pain. I can understand how treatment suggestions feel unsatisfying at this stage. It must be discouraging to have an episode in the midst of trying to stay active. Have you found ways to modify or new types of physical activity that are working well for you?
Hi all, my name is Allison. My arthritis has recently caused extreme pain in my feet making it difficult to walk. I've had difficulty walking for years, but kept hoping it would improve. I hadn't seen a podiatrist since before the pandemic until a few days ago. Well, they essentially said I should try not to walk too much and may need surgery in the future. I was devastated by this. I wanted to get better and be morr active. But what now? I'm honestly quite depressed and having difficulty accepting it. I also have other pain in my legs and knees, and I'm going to see a rheumatologist. The podiatrist gave me a brace, but we're also going to do a custom brace for me. I feel like I am a disabled person now. It's hard. I feel trapped in my body.
Hi Allison, I am sorry to hear you are having difficulty walking. Hopefully, the rheumatologist will be able to help you more and be able to offer suggestions for releif.
Are there plans to have events in the future for this group?
Yes. The next meeting will be on Thursday, October 12, 2023, at 7:30 pm ET / 6:30 pm CT / 5:30 pm MT / 4:30 pm PT. Our guest speaker, Krystal Smith, Mental Health Professional and fellow arthritis warrior, will share tips on how to deal with the uncertainty of a new diagnosis, including proven self-care strategies. Join those who understand what you’re going through and get the support you need.
Hello,
I'm newly diagnosed with multiple spinal issues, the most painful and often debilitating of which is cervical radiculopathy. I haven't seen any posts about this condition: " pinched nerve" makes it sound benign, But there are hours when I cannot move my arm ( median nerve involved from neck to hands.) Was sent to pain center for some treatments, taking gabapentin (causing depression, brain fog) and PT, which I like. But the pain center cannot give me any prognosis or big picture of my diagnosis. I fear my primary care doc, who referred me to pain center, might balk at my request for non-anesthesiologists to guide my care. Help!
Hi,
I am newly diagnosed with Sjorgren's ( autoimmune condition) and generalized osteoarthritis. Also just started on Plaquenil. Have kidney disease. Hoping to continue to work full time.
Hi folks,
I'm glad to find this group, because everything I've read says that dealing with an autoimmune condition is going to be a long haul!
It's only been a couple months since I started working with a rheumatologist. Diagnosis still unclear. I'm on my third medication, waiting to see if it works. Also trying an autoimmune paleo diet. Not sure if it's helping at all.
I feel grateful to my wife, who's taking care of me and doing everything around the house I can't do with my weak, inflamed hands. But it makes me feel insecure to be so dependent. I've always been a super independent, very active person.
What is helping you adjust to this "new normal"? I'd love to connect and hear how others are coping.
-Cassie
Hi . I was diagnosed a year ago with rheumatoid arthritis. It started with my toes and then swelling in my fingers . I tried to go without any medications but I finally decided a month ago I would try treatment . I've always been a very active person and it was a little devastating when I needed help in the mornings to squeeze toothpaste onto my toothbrush. I've modified my diet to a more anti inflammatory one even though I've never ate bad to begin with 😏. I've adjusted my exercise routine and stick to my peloton . No more out door biking (the bumps on the road hurt ny wrist ) I haven't even tried to take out my kayak 😞. That said I'm staying as positive as I can . I'm going to massages once a month to ease my muscles . Started physical therapy to help me adjust and navigate the tightness of muscles caused by the inflammation in my joints. When one side hurts you just put more pressure on the other side as an adjustment which causes tightness and muscle strain . I'm thinking of doing accupuncture in the future ... in short I'm doing whatever is in my power to navigate this disease
Hi Cassie,
It's Kathleen again! I found physical therapy and splints to be very helpful.
I have severe bilateral thumb arthritis but have been able to decrease the pain in my hands.
Hi Cassie,
Has anyone checked you for carpal tunnel syndrome? That can make arthritis/pain and weakness in the hands worse.
I had bilateral carpal tunnel surgery and it helped significantly with my pain and weakness of grip strength.
The inflammatory markers in your blood are another matter ..
Goid luck !!
Hello there. My name is Angelo. I've recently been diagnosed with severe osteoaethritis in my right hand specifically my right finger. I am struggling alot being that I am 38 and have the rest of my life to live with this disability. Any time I move my finger it clicks and I have been losing strength in it rapidly. It's doubly concerning because these symptoms came on in a manner of weeks so bring told that my whole life has changed overnight is terrifying. I work with my hands alot. I'm a writer, professional video gamer, fire dancer, cook, and Gardner, all things that make heavy use of my hands. I've fallen into a particularly deep despair feeling like I have to give up all the things that make me, me. I just need to talk to someone who can give me some hope. The constant pain just keeps making me feel like my life is over. Can anyone help me? Give some words of encouragement? I feel very alone.
Hi Angelo !
I have had great success with physical therapy and hand splints for my bilateral thumb arthritis! I only use the splints when the pain increases and then I go without them most of the time. When I had a big flare up I would use them for a few hours of the day while still remaining active.
There is absolutely hope for you and it is good to stay active. Physical therapists can show you how to modify your movements when needed to allow for healing.
Good luck!
Kathleen
Hi Angelo,
Sorry to hear you're going through this. You're not alone! I'm going through a similar experience. I'm 47 and I have an imflamatory arthritis in my hands. I think it's RA but the doctor hasn't caled it that yet. I'm an artist and I've always been a doer- very active with my hands. I try not to future trip.
For the pain, have you tried the book "you are not your pain"? It comes with audio meditations. I had a similar problem with my back a few years ago and this book really helped.
Hang in there!
Cass
I believe my daughter has Bechet's disease and looking for resources in the Columbus OH area.
Names of groups or doctors. Thank you!
Julie
Hi Julie,
please call Cleveland Clinic and see if they can help! They have a large rheumatology department. If they can't help you, they can refer you to another department! They are a huge hospital!
I went in June and the doctor was very thorough! I am trying to manage health issues locally, if not I will go back!
Hope this helps!
Marcia
Hello lovely people,
I was diagnosed 3 years ago with RA, failed medication after medication only to continue with pain and swelling and horrible fatigue. I seeked a second to try to get more answers and more relief, and I find out I do not have RA, but instead have spondyloarthritis. I am in disbelief, the symptoms and my history sound more like spondyloarthritis, but recent labs and X-rays show everything is normal. I'm so frustrated, I am so afraid my diagnostic testing will keep this doctor from believing my symptoms are real. Hoping to connect with others, see what your experiences have been, and to maybe find out it's not all in my head.
Hi Rachel,
I really empathize with your frustration and fear of not being believed by your docs. I am newly on the path of finding the right diagnosis- most symptoms fit positively for AS (labwork, clinical symptoms, and damage seen on xray) but my MRI was normal so the Dr. says its not AS but cannot identify any alternative explanation for my back and joint pain. I really wish the diagnosing process could offer more clarity but it sounds like for a lot of people this take years. It's definitely not in your head- stay steady with what you know and are experiencing. I'm hoping you get some relief and validation from a testing stand point as well.
Kara
Are you going to a large university affiliated type of facility ? Please consider a second opinion. Also, autoimmune conditions can change.
Best of Luck ! Kathleen
Hi Rachel,
Ugh that sounds frustrating! I too have an unclear diagnosis. Spondy symptoms a few years ago. RA symptoms now. My tests also mostly show normal. Hang in there and keep pushing your doctor! Have you gotten a second opinion?
All best,
Cassie
Hello everyone,
My name is Teresa. I am 49 and new to this group. I have osteoarthritis of my left knees and have degenerative joint disease/osteoarthritis of multiple levels in lumbar and cervical spine.
Teresa
Hi everyone, I was diagnosed with fibromyalgia in October, after having symptoms for 2 years and ruling out other causes of my pain, fatigue, brain fog, tingling in hands and feet. I also have TMJ, tinnitus (ringing) in both ears and unexplained pulsating tinnitus in one ear (ruled out all the scary potential causes of that.)
I am still getting my mind around the chronic nature of this disease and my constraints. I am in my first week of 12 weeks FMLA leave from my high-stress 40+ hrs/week job. My goal is to design a sustainable lifestyle that allows me to live with FM and manage the pain and fatigue as best I can. I am looking for an FM clinic - live in, day clinic, anything, that is in the Washington DC area but I would consider going anywhere. Mayo clinic in Minnesota referred me to their pain clinic instead of the FM clinic, not sure why.
Could anyone recommend an FM or pain clinic? Also, are there any FM-specific support groups?
AS currently looking for a job & Treatment.
Hi,
This is Muhammad Suleman Ahmed. Recently diagnosed I am having Arthritis from last nine, ten years (Axial disease of Backache) which effects my family, social, professional and personal life. I have used different types of pain killers and steroids to manage my daily physical life, currently I am prescribed Tofajak(Tab) and Airtal from last three months to be avoid from steroid and other side effects on my body and for future.As of now I am unable to perform any kind of physical activity. Unable to earn bread & butter from my family, As I am married and blessed with two kids. please advise what to do in future, how to carry on further.
(Main purpose is actually to confirm either I could get recovery to live normal life or how it works to do Professional job in future and is this the right plateform which support such victims or guide to get back normal life again)
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Cell # 0092-344-5400-504
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Hi this is me Muhammad Suleman, I pray & hope all in good health.
Hi everyone...I finally have a few minutes to introduce myself. I was diagnosed (sort of) with osteoarthritis this past December after seeking treatment by a OMM doctor and a couple of months of PT. I was referred for an MRI which showed not only arthritis, but also scoliosis and multiple bulging discs in my lower back with a pinched nerve causing severe sciatic pain. I declined the steroid shot in my L5 and am currently on celebrex and lyrica. The meds are helping, but as I was a fairly active person prior to the pain I'm not finding the relief that I want. I did yoga on Saturday and yesterday I could barely move. I have a follow up visit with the orthopedic doctor next week to get my bone density results. Is it normal to get arthritis results from the orthopedic doctor? He didn't send me to a rheumatologist so I guess I just take the medicine for now. I've been trying to stay positive, but life has been throwing me crazy punches around each turn. I spend a lot of time in prayer. Is anyone else here from Alaska?
Hey everyone. My name is Brenda. I have had back pain and multiple epidurals for years. Over the past years my joints have been hurting but it wasn't severe. September 1922 I started having terrible joint pain all over my body. Several months later I finally got in with a rheumatologist then last week 1-25-23 I was diagnosed with RA.
I am taking Prednisone and took my first dose of methotrexate this past Sunday. I understand it can take up to six months to really start working. I need suggestions to help relieve the pain during this time. I understand I cannot take Advil and have to be very careful taking Tylenol as it affects the liver. Any help/suggestions would be appreciated.
Thanks
Hi, everyone. Say, just curious. My internal medicine doctor ran some tests which show I have RA. She put in a referral for me to get in with a rheumatologist. Now starts the process of getting an appointment. They are booked out for like 3 months! I'm waiting for my turn just get on the schedule. How do I cope in the meantime as my joint pain is increasing as more joint damage is occurring? Patience is not my strong point. I take Tylenol and celebrex. Trying to stay positive and active. What are some of your experiences trying to get into a specialist? And coping in the meantime? Thanks
Hi Cathy! I had a similar experience with trying to get into the rheumatologist. My employer has a seond opinion program I as able to go through that allowed for me to talk directly with a rheumatologist to talk through the diagnosis. They also put me in contact with a local rheumatologist I was able to get into sooner. Perhaps, you can see if that's an option for you? If not, ask your internal medicine docotor for other recommendations. He/she may know more than one rheumatologist. Additionally, I was told to have future medications approved I need to be on 2 NSAIDS such as Aleve and ibruprofuen (Tylenol is not considered in that category I was told). I've found stretching and yoga are helpful along with a Mediterrean diet that includes omega-3, fatty acids. Suanas, hot tubs, warm baths, and heating pads are helpful, too.
Best of luck!!
Cathy,
The first thing I would do is get on an anti inflamatory diet like Paleo. Do not eat proccesssed foods. If it has a food label on it don't eat it. Freshh fruits and vegetables and lean meats. Fish and chicken not pork and beef. Shop the outside edge of the grocery store and pass the dairy and bakery. I would try Voltaren Gel it works well and you can get it OTC now. Take warm baths and if your hands hurt purchase a Therabath hot wax machine to put your hands and feet in. This will help get you untill you see your doctor.
Mike C
Hello, I was recently diagnosed with CREST. I have struggled for almost 22 months, have gone through multitudes of testing, procedures, specialists, and I now only trust handful of doctors. I have Barrets Esophagus, I dont know how to eat with having both of these going on. I also have DJD, thoracic spine fusing itself together. I am living day to day as a gift, trying to stay positive and active all this time, but I am hoping to find people that have lived this way, and can help me get through in the best way possible.
Hello members, If you have not registered for our Yoga for Arthritis event tomorrow, Thursday, 1/19/23, 4:30pm PT, 5:30pm MT, 6:30pm CT, 7:30pm ET, please do so. It'll be a relaxing time with yoga exercises, deep belly breathing and a brief meditation.
If you are able to attend at the last minute, here is the zoom link which will take you to the event sign-in page. https://arthritisfoundation.zoom.us/meeting/register/tZUlf-6oqzwrEtC-TlufJNdyCAv3xr9Ro1LS
Hope to see you!
Elena, Kathy & Krystal
Hello there, I've hesitated joining this support group because I feel like I've been in a state of disbelief/hope/denial since my PCP diagnosed me with RA two weeks ago... Despite having on and off pain in my wrists and hips for about 7 years, and a positive rheumatoid factor, I'm still holding onto hope that there's a different explanation. Still have yet to see the rheumatologist, and I'm worried because my ortho said my femoral heads (round part on hip joints) don't look 100% normal... So now I'm scared that maybe this has been affecting my joints for years and I'm just finding out. I'm 36. I know it's hard to hear at any age, and I'm still so much in the dark about where I am in terms of progression. Anyway, similarly to the rest of the folks posting here, it's hard to stay positive. But one thing that's helping is focusing on how grateful I am to live in a time with more advanced treatments and resources like this group! I'm also so grateful for my husband and my sweet dog. It's a "both/and" situation for me right now... It's hard to think of feeling two seemingly opposite emotions at the same time, but right now I'm feeling both sorrow and hope. Wishing a little bit of peace and solace to whoever is reading this who needs it right now.
Hello all,
I am 38 and just diagnosed with psoriatic arthritis. I have yet to master the positive attititude on this, and have been sprialling and breakign down. My symtoms have been limited to swelling and pain in my wrist and middle finger. I am learning that rheumatologists send you straight to methotrexate (sometimes another DMARD). The side affects and quality of life on these drugs do not seem great...
A friend recommended trying some support groups, so here I am. Interested to hear about other peopel's experiences.
Hi Hailey,
I totally understand hand swelling and wrist/finger pain. I just joined this group, I woke up on my 43rd birthday almost 22 months ago, with swollen fingers and wrists and headache. Symptoms have gotton worse over all this time. My middle and ring fingers bilaterally get stuck and painful. I feel like I have bilateral carpel tunnel, bilateral tennis elbow, bilateral rotator cuff issues and bilateral trigger fingers. I have had SI joint issues since my mid 30s, to the point that I couldn't walk without a walker, then after a few years, I found a doctor that told me the ligaments aren't holding things together, so I do Yoga at home, with excercises to keep in place. But all this other stuff, past 22 months, only had positive centromere ab. Last week, an experineced Rhumatologist diagnosed me with CREST, and doing more bloodwork. I have had some bad experiences with doctors over past 22 months, so I now have trust issues. I only trust handful.
Agreed. I feel the same way.
I agree, staying positive is really hard. I've been being open to the fact that I can feel two opposing feelings at the same time, so that a little positivity can still exist within the more negative feelings. Thank you for sharing your story and I hope you've gotten more answers.
Not yet officially diagnosed with RA at 33 but I'm also responding to well to medication given to those with RA.
Hello. My name is Lorine. I have had joint pains in my knees for many years but was diagnosed with osteoarthritis mainly in my hips a year ago. I have been in denial ever since, and am slow to accept that I have a lifelong illness for which there is no cure. It's hard to find the right medication to help with my pain. It's either I am allergic to the ingredients or have a bad reaction to the side effects. At times I go into a state of depression because people around me don't understand what I am going through and think that it should not prevent me from doing certain things.
Hello,
I was just diagnosed with RA and am looking to connect with others to learn and support each other. I look forward to getting to know people.
Betsy
Hi Carolyn, I'm 40 and newly diagnosed. My little ones are 6 and 2. It's really hard some days, but I've found that the being in the AIP protocol diet and walking 30 minutes daily has helped greatly with the symptoms. The pain still wakes me at night, but not as bad as before. I was prescribed sulfasalazine by a Rheumatologist, not sure if that's the reason as I have not been taking that long. Wishing you well!
New to Ra diagnosis here too! I've had pain in my hands on/off since August. 39 now and have kids who are 4 & 8. I'm a teacher. in August, typing was hard. Some mornings doing the rower or biking was difficult. Today, my toes were hurting more. I am very active, do yoga and am hoping that I can figure out treatment..right now I'm on Naproxen. The pain does wake me at night, but for now, it's manageable. I'm just nervous it'll get worse.
I was diagnosed with fibromyalgia in 1991. Since there's no cure - I just tried to stay healthy andbto
lusten to my body when it screamed ENOUGH! Now I think some of that pain was from osteoarthritis too! Lab test so far say no arthritis but I'm not sure about that. I have bone on bone knees and am currently trying new ways of walking and going up and down stairs using flutes and less thigh muscles - too much thigh muscle makes it worse. Ok - I'm not going into too much here. As I'm hoping that there is more activity on this MUCH NEEDED site .
Newly diagnosed. I've been in denial about the pain and my hands changing. Now that I have more information I'm down and overwhelmed. I'm a painter, I need my hands for that and everything else. I'm not very good at connecting with communities but I'll give it a try.
Hi Lori, I am currious over what time period you tried five diferrent meds and what they were.
Lori... I was just diagnosed too. I have been a hairstylist for 35 years so definitely need my hands and it's the only job I know how to do in my life. I am very frustrated, mad angry depressed. Every emotion there is I've been on five different meds finally am now on Enbrel injections.
I am 45 years old and recently diagnosed with osteoarthritis in both my hands . I am still a little overwhelmed by the diagnosis. Any advise ? I am just trying to wrap my head around it and plan for the future. I still have a lot of working years to go
Hi All,
Just found this site. I have osteoarthritis and bone spurs in both knees, in my right hip (with bursitis thrown in for fun). I was just diagnosed with spinal stenosis - x-rays and mri show arthritic degeration and Cervical osteophytes. I am wondering if it could be more than osteoarthritis? it seems like I am getting more and more sore and achy. my nuckles are getting swollen.
Any suggestions on what I should do to find out if it is something else?
I recieved confirmation of the event. Why don't I see any type of link to it?
how do you connect to the event. i am on the verge of giving up. very frustrating.
Alice lyons
the llink to join tonights meeting is: https://arthritisfoundation.zoom.us/meeting/register/tZApcu6tqTguHdx59L0ovkJHcqz4RdFyvULK
Hello everyone. Just trying to navigate my way down this road and stay positive.
Just diagnosed with a shingles outbreak on my face. Ugh.
Hi all! My name is Alana, I am 28 years old and I was just diagnosed about a month ago (very recent). I wanted to be connected to a support group of people who understand and are going through similar struggles for support. If I could be provided with the meeting details, I would really appreciate it! Thank you! :)
Hello Alana. I'm John. Diagnosed June 2022 with RA. Been a little bit of a struggle but trying to stay positive. Hope you are coping well, you are not alone.
Hi, Everyone, my name is Huiqing and I'm 38, I'm married and having 2 boys 5yrs, 7yrs old.
I'm recently diagnosed in July, and having been trying Methotrexate with increasing doses. But the symptoms are just getting more spread and worse, and shortly after the diagnose, I got my first TMJ, and CT now confirms this could be caused by RA as well. I'm quite overwhelmed by these blows, and really have no good idea how to steer through. I missed the time when I chased my boys on the playground, I missed the time when I can have a good sweat after exercise and feeling all refreshed after a good sleep. I'm afraid I haven't accepted the disease yet. Hope to find people to talk to and learn from. Even a bit of norm of life could mean a lot.
Best Wishes,
Huiqing
Hi everyone! My name is Karen I am 38 yrs old. I am married with three beautiful young girls ( ages 7,4 and 3) to say that they keep me busy is an understatment! If I wasn't busy enough I am currently in school to get my associates degree in nursing, I will graduate this spring with my RN degree! Shortly after I was accepted into the nursing program is when I started to notice symptoms, it started with my fingers and wrists hurting. I didn't go see my primary doctor until I was not able to lift my youngest into her car seat without having horrible pain my hands and wrists. My primary who is usually very cautious about saying something until she has the information to back it, told me before I left to get labs drawn that she thought I had RA. Since that time I was linked up with a great rheumatologist, who is working to find the right treatment for me. My joint pain journey started almost a year ago and while I know that it is a lot of trial and error to find the right combination for treatment. I am trying to stay positive but as of lately that has become a huge struggle. I am tired all the time, I am tired of feeling like a human guinea pig, I am sick of being on prednisone all the time( I am 7.5mg which is the lowest I have been on in a year). While my husband has been so supportive, I don't think he truly understands what a day is like for me and if I try to explain to him how exhausting everything is all I hear is "I'm sorry your life is so terrible" I despirately want to give up and just not try anymore. I wish that something that we are trying would magically click and I would not be in so much pain any more. I joined this group hoping to find that I am not alone because right now that I am alone and its me against the world. I am sorry that I am not more positive, I try so hard to put up a positive front everywhere but tonight I am at a point that I can't anymore.
Karen
Karen you're definitely not alone I just joined in this group tonight.. I am all over the place on emotions sad, depressed, angry feeling like a failure. I've been a hairstylist for 35 years and I don't know what to do now.. this RA is making my job almost impossible. The fatigue and pain is horrible. I've always been an active person and I feel like doing nothing. Now I feel like a complete failure have been on five different medication's methotrexate seem to help the pain but lost most of my hair had severe side effects so today was my first try at Enbrel
Hello Karen. You are definitely not alone. I'm in NY and my diagnosis was in June 2022. My Rheumatologist wanted to stop the prednisone asap. I started with methotrexate which relieved the excruciating episodes of joint pain but was still having flare ups about 2x a month. Started Humira 1 1/2 months ago and have taken 3 doses and have been pain free. Now I have an outbreak of shingles on my face due to immune system suppression. I understand how difficult it is to stay positive and how other people who are not living through this can sometimes not fully understand. The thing that I think helps me to stay positive is to keep thinking it could be a lot worse and I try to spend as much time as I can being outside with nature walking and hiking a lot. If you have any questions or need someone to talk to I am here. Wishing you better days. We will be ok.
Having to get used to not being able to do things I could do before or having increased pain after doing them.
New to this for sure but that's why I am here. In the past 10 months I have had a surgery on the left Wrist and right Thumb. Arthritis combined with Ligament and Tendon damage has limited use of my hands. Have been unable to go back to my position at USPS and am looking for what's next. While I wish this on no one I hope to learn from others experience.
Recently diagnosed, with all the symptoms, I feel overwhelmed at all I need to know and how to prepare myself for this life-altering disease.
Hello Norris,
Welcome to the Newly Diagnosed Group and thank you for posting on the discussion board. It really is overwhelming to wonder about all of the ways your life might change or perhaps already has changed. The Newly Diagnosed Group is a good place to start processing that with others that are in a similar place and to learn helpful information and areas for further study and support. The arthritis foundation web site has many informative articles on each type of arthritis and new information on treatments and research. Connecting with your local LiveYes!Connect support group also helps because they are focused on helping you design your new normal and find creative ways to continue doing the things you like to do. You might be interested in attending our Newly Diagnosed meeting coming up on Thursday, November 17th as we are having a guest speaker who is a Rheumatologist. You can sign up through the Events tab.
What are some of the coping mechanisms you have been using to manage the symptoms and anxiety?
Warm regards,
Krystal
It's a whole new normal.
Life altering is the perfect word. I told a doctor in the Fall my life has changed.
Hello! I was diagnosed in April and have been working on finding the right medications for me, but still having pain that is limiting. I am a veterinarian and took sime time off after diagnoses, and then started back part time. At this point I am considering quitting for a period of time until I can get things under better control. The job is very active with a lot of standing and getting down on the floor to examine dogs, and it is really hard especially on my feet/toes! I also was always one of the vets who did the most surgery at my practice, and I am unable to do any surgery due to my hands : (
Wondering how all of you cope with work, I feel like taking some time to just focus on getting better seems like a good choice. The job is also very stressful, and I know finding ways to decrease stress level can be helpful.
I am also am an avid cyclist, and have not been able to do much biking this summer...any other cyclists out there with advice? Also love to cross country and downhill ski, and hoping things will be more tolerable before winter hits!
Hi Elizabeth, I am new to the group and reading through posts. I am wondering how things are going for you now? I also like to bike and ski and am feeling pretty down about the potential interference. I also have a stressful job, and have been struggling to keep it together. I am an attorney and trying to navigate what I actually need from doctors to take some more extended leave. It all feels like an uphill battle. Have you found any relief?
Hi Sister M,
I like that you ask students to do some of the opening, etc. People usually don't mind once you ask them.
Krystal
Hello Elizabeth,
I am glad you took some time off for yourself. That is one of the best ways to stay resilient. It also helps to connect with family and friends. In my last job, I took one week off every three months and it seemed to help. Because of my osteoarthritis, many tasks take more time for me to do now and I find myself using assistive devices more frequently, such as my grabber, my sock aid, or my long shoe horn. Herding my cats and picking them up off the floor is harder, for sure. I wonder if in your case Elizabeth if there might be some adaptive supports that could help you to do your work. The hard part is that usually others in the workplace are not thinking much about that, so it is important to advocate for ourselves. This Ableism in Veterinary Medicine article (https://www.avma.org/javma-news/2021-06-15/ableism-veterinary-medicine) has some inspiring stories and links to other pages that might be helpful.
I have heard from cyclists with arthritis that they have found adaptive cycling methods and groups. That might be something to look into.
Krystal
Wow, your job does require a lot with the bending. For me, teaching is okay but I have been asking students to open things and do some things that require my hands and this is new for me. The students are gracious and I am hoping it won't progress further. I enjoyed the article about arthritis in the cold- that should help during recess duty.
Hello, I have ankylosing spondylitis and psoriatic arthritis. The AS was diagnosed by my new physican assistant after my doctor of years mentioned my complaining about a little pain and said I should stretch my hands daily. Left her. After the diagnosis I am going to a great rheum. group. I feel like something with my upper torso changed and am going to have a chest x-ray. I think I am right because I just had a mammogram and had trouble getting into one of the positions. This never happened before. I read the online report and I will have to go back.
Hello Sister M,
It is good that you remained persistent and found a rheumatologist and a physician assistant who looked deeper for an arthritis diagnosis.
Those mammogram call backs are always anxiety-producing. Best of luck with the next scan.
Krystal
Hi! There are no local groups in AZ. Is there an online group that is active that I can join? Thanks in advance, Corissa
Hello Corissa,
Welcome to the Newly Diagnosed Group and thank you for posting on the discussion page. If you go to connectgroups.arthritis.org and select Find Groups/All Groups, there is a list on the left of groups by topic and then a list in the middle of groups by location. All of our groups meet online, so please feel free to join any of them. If you are interested in starting a LiveYes!Connect group in Arizona, please let me know and I will connect you to someone who can help you get started with that. You might be interested in attending our Newly Diagnosed meeting on Thursday, November 17th as we are having a guest speaker who is a Rheumatologist.
Warm regards,
Krystal Smith
Hi, I am Shawnene Vance, I have had severe Ostoaritihis for two years now. Does anyone know of resources of pain management assistance and employment resources? Since having my condition I have needed a new job and have been having a hard time finding one since being disabled. I have had help but no luck. I am just shooting my shot of any resources that maybe available. Thanks so much!
Hello again Shawnen,
My friend who is a career specialist recommended Careeronestop.org and DSHS in your state for job hunting resources.
Krystal
Hello Shawnen,
Thank you for joining the Newly Diagnosed group and thank you for posting in the discussion area. It is great to have you with us. Osteoarthritis pain can be very distressing as it is intrusive and can interfere with daily life in may ways. There are some pain management resources on the Arthritis Foundation website. On arthritis.org, there is a Tame Your Pain button that leads to a Tools to Manage Pain podcast. In the podcast, experts explain the biological roots of pain as well as ways to mitigate pain using naturopathic, medicinal, and psychological methods. Also on arthritis.org, there is a button to download a pain management app called Viim. Regarding employment resources, I will do some research and will reach out to a friend of mine who is a career specialist. What type of work are you interested in?
Warm regards,
Krystal Smith
Hello!
I am new to this site and looking to find out about local to my area ( Delaware) or online talks. I was recently diagnosed with RA after suffering most of the summer with acutely inflammation/pain in various joints. My symptoms started 2 weeks ( to the day) of when I was diagnosed with Covid. I just started on RA med Leflunomide but upset that it can take up to 3 Months! to work per my rheumatologist. Hoping this site will be a good resource. Thanks !
Hi Kellie,
I had symptoms of RA start about a month after I got my second Covid shot, when I first met with my rheumatologist she asked if I had had covid or recieved the shot. She told me that they had seen an increase in RA cases in people that were exposed to covid in either form. It is BEYONE frusterating about how long the medications can take to start working! I was taking Humira for 3 months with very limited relief from taking that and now I was started on Enbrel along with my Celebrex, Methotrexate, Folic acid along with still taking prednison. I pray that your medication starts to work for you and you will not have to keep trying differnet medications!
Hello Kellie,
Thank you for joining the Newly Diagnosed group and thank you for posting in the discussion area. It is great to have you with us though I am sorry you are having to go through those painful flare-ups. I hope your medication helps you to feel better soon. Regarding finding a local group: On connectgroups.arthritis.org, select LiveYes!ConnectGroups. Select Find a Group. Select District of Columbia or one of the other state/city groups. Press the Join this Group button. Local groups offer online meetings. Eventually, if you are interested, you could start a new group in Delaware.
Warm regards,
Krystal Smith
tldr; life's a punk, skip to the final paragraph
Hello all,
I was diagnosed with psoriatic arthritis in August. Prior to that, I was diagnosed with fibromyalgia in 2015 after a years-long, frustrating journey with the doctor I'd been seing since I was 16. After literally being tested for everything under the sun, tons of scoffing at even the possibility of fibromyalgia, and absolutely no answers, I finally changed doctors and had a diagnosis within 6 months.
Prior to having COVID in January of 2021, I had never had psoriasis. Afterward, I had been fighting a battle with what I thought was severe dandruff in my hair and beard. Since my illness with COVID, my flare-ups had been more frequent and severe, and my "normal" pain levels were significantly higher. This all came to a crescendo when, on July 5 of 2021, I woke up and could not walk - as in, my legs would not support me and the pain was immense. This led to a new round of tests for everything from MS to suspected Guillain-Barre Syndrome to Ankylosing Spondylitis.
This process likely would have been less frustrating had I been seeing the doctor that gave me the fibromyalgia diagnosis, but due to insurance loss and changes I haven't been able to see him in over 7 years. I finally found an AMAZING general practitioner who referred me to an equally incredible rheumatilogist who actually listened to me. He tested me for a few things, and likely would not have caught the psoriatic arthritis had I not been clean shaven at my appointment in July. The redness of my skin and the scales were a dead giveaway, and after checking my head he was pretty much convinced. He ordered an extensive x-ray of essentially all of my joints, and by August I had a diagnosis.
Now that you have the background, let me fill you in on how this is affecting me. I started back to school this past summer - I literally have two semesters to go before graduating. This fall, I had the absolute worst flare-up I've ever experienced. I've been bedridden from pain before, but not like this - and not for two weeks straight! It was during this flare-up that I became convinced that I'm one of the ~30% of PA sufferers who also have fibromyalgia - something my rheumatologist was already convinced of, but I wasn't. There were two distinctly different kinds of pain: what I've termed "physical" and "nerve." The fibromyalgia causes "nerve" pain: burning, stinging pain like fire ants everywhere but worse in addition to incredibly intense sensitivity to everything - touch, cold, heat, etc. The PA causes "physical" pain - intense throbbing and sharp pain in every joint on my body. The fatigue was and has been unlike anything I've ever experienced, and holy cow the brain fog - it's like thinking through molasses!
To wrap up - sorry for the wall of text. I'm hoping to gain insight and encouragement here. I'm usually faily optimistic and hopeful, but it's been so hard lately. My wife, my only confidant and support, is burning out - and who can blame her? There are no local groups I can talk to - even broader "disability" groups don't exist here. The closest are in a city over 2 hours away and - for some reason - don't offer zoom. I'm treading water but I'm so so so tired. I need help, a life preserve if you will.
Thanks in advance.
Hello Derrick,
I see that Krystal has welcomed you with open arms but I also wanted to add just a couple of things...Totally fine to vent. We understand the frustration and the myriad of emotions that come along with an autoimmune diagnosis. As I have learned, it's not uncommon to have more than one diagnosis going on. Arthritis.org is a great resource - use the search tool to help narrow your search as the website is FULL of information! You can also find a virtual group near you by going to connectgroups.arthritis.org and search by state. Most groups meet virtually but many groups are starting to meet in person. Like Krystal said these groups are a safe place to share, ask questions, find support or get help finding resources. Please don't hesitate to reach out again if there is any way we can be of further help to you. We suggest you attend our next event with Dr. Girnita, "Diagnosis and Symptoms". Best regards, Elena
Hello Derrick,
Welcome to our group and thank you for sharing to the discussion page. I would imagine it has been very frightening and extremely distressing to be in limbo for so long about your diagnoses while experiencing debilitating, lengthy flare-ups. We have a safe space for you here and you are not alone. Feel free to invite family members and friends to join you in utilizing the Arthritis Foundation and our group meetings and this discussion space. Stay with us to find new coping mechanisms, self care strategies, and fellowship. You may be interested in our upcoming meeting on Thursday, November 17th, when we are featuring a Rheumatologist as our guest speaker.
Warm regards,
Krystal Smith
Hello, I was diagnosed with Rheumatoid Arthritis in May of this year and I'm still figuring out how to live with it. I'm glad I could join this group and chat with people in the same situation. I look forward to meeting you all.
Hello Elizabeth,
I am sorry to hear about your diagnosis but am happy you found our group, and thank you for posting on the discussion page. As you pointed out, it is very helpful to have support from others in the same boat. I always appreciate how each person has found ways to cope. What are some of the strategies you have been using?
Warm regards,
Krystal Smith
P.S. You might be interested in joining our next meeting on Thursday, November 17th where we are featuring a guest speaker who is a Rheumatologist.
Also, there are many interesting articles and tools on the Arthritis Foundation website that can provide insight and inspiration.
Hi, I am not sure how this works but I missed last night's talk. Is there a recording of the speaker I can access?
You can sign up for meetings by selecting the Events tab.
Hello Sister Mary,
I looked for you at the meeting to give you a special shout out hello. No, the meetings are not taped for confidentiality reasons. Our next event is tentatively scheduled for Thursday, November 17, 2022, 4:30pm PT. If you have any more questions please don't hesitate to reach out. Looking foward to meeting you at our next meeting.
Elena
Hi everyone. Does this group have a regular online meeting?
Hello Julie,
The National groups are just starting up. As of right now we have meetings scheduled September, November, February and I believe April. There are other "local" groups - is there one located near you or in your state? The foundation requests that we meet once a quarter. I'm also the facilitator for the Sacremento, CA, group and i try to schedule a meeting once a month. If there is not a meeting in your state, I suggest you join Haydee's West Los Angeles, CA, group. She's fabulous, has been staff and a volunteer with the foundation for a long time and has a meeting once a month.
I'm so glad you reached out. Please don't hesitate to reach out again if there is anything I can do.
Best, Elena