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Rheumatoid Arthritis Connect Group

Rheumatoid Arthritis
885 Members

This online group serves the members of our arthritis community who are living with rheumatoid arthritis from across the country. 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.

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Connect Group - National - Rheumatoid Arthritis

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Comments [78]
Sarah C
Sarah C
June 19, 2024 - 2:52 PM

Hi,

I was diagnosed with RA about 25 years ago.  It started mainly in my feet and is stil mainly in my feet - the problem is my balance and weakness in my right leg which is less strong than the left because I favor the left (because the foot is less deformed).  Now my right leg has 30 % less muscle and seems to be getting worse and worse (ie. wasting away).  Has anyone had this problem?  I don't want to get surgery because my feet dont really hurt and they are so deformed it would take a year of recovery for each foot.  The only thing I think I can do is workout the right leg only to build it up but am curious if anyone out there has this issue and what they are doing about it.  Thanks. 

Valerie N
Valerie N
June 13, 2024 - 2:40 PM

Any input on RA medications that help?  I've been on infusions and am now beginning injections with Cimzia. Infusions helped until insurance changed payments to doctor. 

Tanya K
Tanya K
June 6, 2024 - 1:30 AM

Hi! 
Is there anyone on here from South Carolina? 

BettyAnn B
BettyAnn B
May 29, 2024 - 12:40 PM

Hi everyone!

New member of the group here. I wrote out some of my story but evidentially I took too long to post it and the website signed me out. Gha!

Does anyone know the time limit to post something before you're automatically signed out?

Thanks,

BettyAnn.

Emily W
Emily W
May 11, 2024 - 12:06 AM

I was diagnosed with RA and Sjogrens syndrome in February 2024 after a major flare up. I think I've been dealing with many of these side affects for years but thought it was related to my life style or situations in my life at the time but they never really went away. On one hand I feel relieved to have a diagnosis and a really great care team but on the other hand I'm a few weeks shy of 38 years old and needing to figure out this new way of living. 
I am married and have two young girls. I feel like when I was dealing with the flare up and uncertainty of what was happening my husband really step up to care for lots of things but now I feel we are both slipping into old habits that aren't sustainable for me moving forward. 
My pain and fatigue have really impacted our ability to connect and I'm having a hard time communicating what's going on with me because it's so new but I also don't know how to find new ways to connect and communicate when at the end of the day I'm beyond tired. 
I would love help if anyone has advice for communicating to spouses and continuing to pour into that relationship even when your body seems as if it is working against you. 
Thanks in advance!

Julie D
Julie D
May 1, 2024 - 3:45 PM

I am newly diagnosed (Jan 2024) with RA. I have been dealing with degenerative disc disease and arthritis in my lumbosacral spine for several years now. I am finding the joint pain situation to be pretty straight forward, but I am wondering about the autoimmune symptoms such as fever, all over discomfort and fatigue, and chills. I get these little spells only occasionally, though they seem to come in spurts. They are usually early evening. I'll feel fatigued, chilled, but slightly warm like a tiny fever. I have not been ill, no other typical illness symptoms.

Has anyone else dealt with this? I don't know if I can attribute it to RA autoimmune or if it's a fluke.

Lori B
Lori B
May 30, 2024 - 2:34 PM

Fatigue is definitely part of living with RA. I think the other symptoms flow from there.

- Lori

Lori B
Lori B
May 30, 2024 - 2:34 PM

Fatigue is definitely part of living with RA. I think the other symptoms flow from there.

- Lori

Jody B
Jody B
May 20, 2024 - 7:15 PM

Hi Julie,

I was diagnosed with RA in 2022 and Lymphoma in February 2023. Thankfully the Lymphoma is in remission but my RA symptoms are back. There are times when I too feel like I'm coming down with something; chills, fatigue, scratchy throat and slight fever in the early evening but by morning I feel fine except my typical joint pain. 
so I can relate. My physician doesn't really say too much about it being part of having RA but I don't have another explanation. 
thank you for sharing because now I know it's not just me. 
Jody

Elspeth G
Elspeth G
April 4, 2024 - 5:44 PM

Hi everyone,

I was diagnosed with RA about 10 years ago (at 19) but didn't take it all that seriously when I was in college. I was prescribed hydroxychloroquine at first but then moved to methotrexate but didn't take either consistently. It wasn't until a very severe flare this past Oct-Dec that I started taking it more seriously and have been on methotrexate since then. I have also begun getting more into creating a healthy lifestyle (less drinking (as you really can't on methotrexate), more excercising/walking, cooking, etc) and was wondering if anyone has seen a decrease in pain/stiffness with certain types of exercise? Has anyone seen success with low-impact workouts or yoga? Also, I currently live in Washington DC if anyone wants to meet up in person! Would love to bring this support group into the real world.

Elspeth

Kirsten B
Kirsten B
June 6, 2024 - 6:09 PM

Hi Elspeth,

I was diagnosed with RA in February of 2023 but just got my symptoms under control recently in March 2024 with a combo of methotrexate and a biologic. I live in Washington DC and would love to meet up. I've been looking for someone to do low impact walks with around the city!! My email is [email protected].

Lori B
Lori B
May 30, 2024 - 2:35 PM

Swimming helps too!

Paige B
Paige B
April 20, 2024 - 4:19 PM

Hi I find relief and better sleep with yoga.

Jessica B
Jessica B
April 5, 2024 - 4:25 PM

Hi Espeth, 
 

I'm Jessica I'm 28 years old and was diagnosed when I was 24. I also didn't take my diagnoses too seriously at first and wasn't very consistent with taking hydroxychloroquine. This past December I was in so much pain that I lost my ability to do everyday life activities and I began removing red meat, alcohol, and gluten from my diet and saw a relief in stiffness. I also began taking sulfrasalazine and it's been making me feel better. I've gain my mobility back and have been able to start exercising again. I find that going on walks and strength training exercises have been really helpful in maintaining my strength and reducing flare ups. It's quite a journey though, I recently switched health care providers and my new rheumatologist says I am being under medicated and would like me to start methotrexate. I haven't started it yet but I'm very nervous to get started since I'm finally feeling doing better. I am excited to join this group and learn more about others stories and support one any. I am located in California and would also love to connect with people! 

Joe S
Joe S
April 1, 2024 - 8:05 PM

Are there any folks in this group that had lymphoma that is in remission, and then later was diagnosed and treated for RA? If so, I'd sincerely like to connect for a 1:1. Would be great to learn what  you were prescribed for treatment.

BACKGROUND: I'm 61 years old and was diagnosed with RA (Seronegative) in March. 15 years ago I had Non-Hodgkins Lymphoma and underwent 8 rounds of chemo "R-CHOP" (The "R" is for Rituxan / Rituxan) and am in remission. 

My Rheumatoligist wants to put me on Methotrexate (2.5 mg / 6 tabs once per week. Plus Folic Acid 1 mg/day to help with side effects). 

My Oncologist does NOT want me on Methotrexate, because of the potential side effect of causing lymphoma (even though it is a low probability, because I had lymphoma, there is a greater chance I could get it again.

I am taking 10 mg prednisone / day which is controlling the majority of symptoms / pain. (Along with several supplements)

Thank you

Jody B
Jody B
May 20, 2024 - 7:20 PM

Joe let's connect! I was diagnosed with RA in 2022, started methotrexate, collapsed and was hospitalized for a month. After multiple biopsies I was diagnosed with T-Cell Lymphoma and started CHOP in March 2023. I am in remission but my RA symptoms are back with severe flares. I'm only taking leflunamide and Celebrex. 
im in Maine but could Zoom.

Lacey D
Lacey D
March 29, 2024 - 5:01 PM

Hello! I'm Lacey and I'm 38 years old. I was diagnosed with RA, PsA, and Fibromyalgia around 10 years ago. It's been a struggle. I'm currently taking amjevita, prednisone, and nabumtone. The combination helps quite a bit but I still have flares. I'm glad I found a group with other people who understand what I'm going through.

Lacey D
Lacey D
March 29, 2024 - 5:00 PM

Hello! I'm Lacey and I'm 38 years old. I was diagnosed with RA, PsA, and Fibromyalgia around 10 years ago. It's been a struggle. I'm currently taking amjevita, prednisone, and nabumtone. The combination helps quite a bit but I still have flares. I'm glad I found a group with other people who understand what I'm going through.

Michelle C
Michelle C
March 27, 2024 - 9:59 PM

Thank you everyone who has signed up for our next meeting for the Rheumatoid Arthritis Live Yes! Connect group happening on 4/6/24. Please submit questions  via this link (https://linkprotect.cudasvc.com/url?a=https%3a%2f%2fforms.office.com%2fr%2fgpKWMDb94N&c=E,1,M_7inolxtgZhYkmvEMT_KzOk9zjT1Q2WFF1a1t9UX5XKz-VSNLdxDN88PZMtzFMENZDjfaBXj0z3POk_8VQbwF9n240Qk6aaVXAlqwTYnjLXDhlG-jUP&typo=1)
 by no later than 3/28 to be considered for this session.

If you have not signed up, there is still time. We will be continuing our series on relationships and will be speaking about how to tell family about your disease, how to speak with friends and coworkers. We will have a social worker and a panel consisting of family of those living with RA and a Human Resources professional. 

Can’t wait to see you on Zoom!

Michelle C
Michelle C
March 27, 2024 - 9:59 PM

Thank you everyone who has signed up for our next meeting for the Rheumatoid Arthritis Live Yes! Connect group happening on 4/6/24. Please submit questions  via this link (https://linkprotect.cudasvc.com/url?a=https%3a%2f%2fforms.office.com%2fr%2fgpKWMDb94N&c=E,1,M_7inolxtgZhYkmvEMT_KzOk9zjT1Q2WFF1a1t9UX5XKz-VSNLdxDN88PZMtzFMENZDjfaBXj0z3POk_8VQbwF9n240Qk6aaVXAlqwTYnjLXDhlG-jUP&typo=1)
 by no later than 3/28 to be considered for this session.

If you have not signed up, there is still time. We will be continuing our series on relationships and will be speaking about how to tell family about your disease, how to speak with friends and coworkers. We will have a social worker and a panel consisting of family of those living with RA and a Human Resources professional. 

Can’t wait to see you on Zoom!

Jalissa B
Jalissa B
March 23, 2024 - 12:20 AM

Hi I am Jalissa, I was diagnosed with RA when I was about 23 or 24. I am now 26 soon to be 27. I have just started research on the disease and have learned a lot. I am currently on hydroxyclorquine and I have found it to be helpful however, I still find it difficult to do some of the tasks I have at work which include standing in one position for a long period of time or doing a lot of excessive movement. I was wondering if anyone had any suggestions? I am have also joined so I can learn more about what to expect in the future when the RA progresses and also just to have the support of others living with this disease. 

Lacey D
Lacey D
March 29, 2024 - 5:05 PM

I would personally ask your rheumatologist about an injectable. It's done wonders for me. I still get flares but they aren't nearly as bad. 

Jalissa B
Jalissa B
March 23, 2024 - 12:20 AM

Hi I am Jalissa, I was diagnosed with RA when I was about 23 or 24. I am now 26 soon to be 27. I have just started research on the disease and have learned a lot. I am currently on hydroxyclorquine and I have found it to be helpful however, I still find it difficult to do some of the tasks I have at work which include standing in one position for a long period of time or doing a lot of excessive movement. I was wondering if anyone had any suggestions? I am have also joined so I can learn more about what to expect in the future when the RA progresses and also just to have the support of others living with this disease. 

Erica  C
Erica C
March 20, 2024 - 11:03 PM

I'm considering joint replacement surgery for my MCPs on my right hand, and at the same time, repair of the tendons on that hand to correct ulnar deviation. I would like to chat with, or read articles/experiences written by people who have had this procedure. Where should I start looking for these conversations and inputs? 

 

Martin Eric R
Martin Eric R
February 6, 2024 - 7:45 PM

Hello,

I had to discontinue methotrexate after five months due to adverse side effects.  For the last four months, I have been on no medication, but I am experiencing some discomfort for which I am taking acetaminophen.  Is anyone else attempting to address their RA without the use of prescribed medications and only OTC pain relief?  Thank you. 

Martin

 

BettyAnn B
BettyAnn B
May 29, 2024 - 12:36 PM

Hi Keri D,

What meds do you use? I've tried many Rx's and over the counter meds since 2007.

Thanks, BettyAnn.

Julie D
Julie D
May 1, 2024 - 3:41 PM

Oh, that is an eye opening way of looking at it. Thank you for that perspective.

Julie D
Julie D
May 1, 2024 - 3:40 PM

Hi Martin, I am newly diagnosed (Jan 2024). I had one flare that seemed to correct itself without meds (my rheum scratched her head on that) so I decided to hold off on Rx meds until the next one in case it may be a long time between flares. I have been using heat, gentle stretches for the stiffness, and tylenol. So far it has been in my right wrist the worst for actual pain and discomfort when it does hurt, but I've been able to manage pretty well with OTC remedies. 

I'm very new to this, so I don't have much to compare to. I'm a less-is-more person when it comes to drugs but if it gets to the point of interfering in life or being much more uncomfortable than it is, I will take the plunge.

Keri D
Keri D
April 22, 2024 - 5:07 AM

I have heard stories of multiple people not getting the inflammation down by either not taking meds or not being consistent. If your body is in paint and your joints are inflamed there is damage happening within your body that cannot be reversed. For myself, I am committed to staying on meds and changing them as needs to fight the inflammation as much as possible over the years so that it impacts my health as little as possible and work on what I eat, stress, sleep etc. if you are hurting your body is sending you a message. 

March 3, 2024 - 7:36 PM

Thank you Hillary for your reply.  What I've done is to change my ritual in the morning when the discomfort is the worse.  I now give myself an hour or so to drink coffee and get moving.  I then do about a 15 minute yoga session and have been taking a dose of etra strength Excedrin one time each day along with 1000 mg of vitamin C.  The vitamin C is supposed to extend the effect of acetominiphen, and so far it has helped me in that I become functional for the rest of the day with minimal and manageable pain.  I am bound and determined to go as far as I can without prescription medication because the side effects scare me to death.  I hope this helps you.  Have you had any adverse effects from the Naproxen?  Thanks.  

March 3, 2024 - 7:36 PM

Thank you Hillary for your reply.  What I've done is to change my ritual in the morning when the discomfort is the worse.  I now give myself an hour or so to drink coffee and get moving.  I then do about a 15 minute yoga session and have been taking a dose of etra strength Excedrin one time each day along with 1000 mg of vitamin C.  The vitamin C is supposed to extend the effect of acetominiphen, and so far it has helped me in that I become functional for the rest of the day with minimal and manageable pain.  I am bound and determined to go as far as I can without prescription medication because the side effects scare me to death.  I hope this helps you.  Have you had any adverse effects from the Naproxen?  Thanks.  

March 3, 2024 - 7:36 PM

Thank you Hillary for your reply.  What I've done is to change my ritual in the morning when the discomfort is the worse.  I now give myself an hour or so to drink coffee and get moving.  I then do about a 15 minute yoga session and have been taking a dose of etra strength Excedrin one time each day along with 1000 mg of vitamin C.  The vitamin C is supposed to extend the effect of acetominiphen, and so far it has helped me in that I become functional for the rest of the day with minimal and manageable pain.  I am bound and determined to go as far as I can without prescription medication because the side effects scare me to death.  I hope this helps you.  Have you had any adverse effects from the Naproxen?  Thanks.  

Hillary R
Hillary R
February 18, 2024 - 12:14 PM

I am. Naproxen is my life saver. But would love any other insight on managing without meds 

Jan W
Jan W
January 30, 2024 - 2:54 AM

Newbie here to this group and to exploring alternative therapies to heal RA.  I'm currently doing protocol of Dr. Brooke Goldner who healed her autoimmune disease of lupus with hypernourishing plus doing low level light red light therapy along with other modalities.  Open to hearing others experiences with alternatives - I'm not on any prescription drugs.  

Della C
Della C
April 25, 2024 - 9:29 PM

Hi Mary Ann M,

I just had my 60th birthday and diagnosed with RA.  Prescribed the Metholtrxate injection once per week.  A little scary, would love some encouragement.

Thank you!

Della

Della C
Della C
April 25, 2024 - 9:29 PM

Hi Mary Ann M,

I just had my 60th birthday and diagnosed with RA.  Prescribed the Metholtrxate injection once per week.  A little scary, would love some encouragement.

Thank you!

Della

Della C
Della C
April 25, 2024 - 9:29 PM

Hi Mary Ann M,

I just had my 60th birthday and diagnosed with RA.  Prescribed the Metholtrxate injection once per week.  A little scary, would love some encouragement.

Thank you!

Della

Della C
Della C
April 25, 2024 - 9:29 PM

Hi Mary Ann M,

I just had my 60th birthday and diagnosed with RA.  Prescribed the Metholtrxate injection once per week.  A little scary, would love some encouragement.

Thank you!

Della

Della C
Della C
April 25, 2024 - 9:29 PM

Hi Mary Ann M,

I just had my 60th birthday and diagnosed with RA.  Prescribed the Metholtrxate injection once per week.  A little scary, would love some encouragement.

Thank you!

Della

Mary Ann M
Mary Ann M
April 21, 2024 - 1:35 PM

Hi Martin. I am Mary Ann and in my 60s. I would highly recommend that you get established with a good, board certified Rheumatologist. My pain is being managed well now with Metholtrexate (MTX). I get blood tests every three months to make sure it isn't having adverse side-effects on my organs. I am tolerating MTX well and it's allowing me to live relatively pain-free. Although RA is relentless, I am learning that there are things I can do to live with it in peace. Best wishes.

Paige B
Paige B
April 20, 2024 - 4:35 PM

Hi Jan, just joined this group.  I have struggled with seronegative RA for 18 years. To the average provider I look pretty healthy on the outside and my labs are negative. There was a day when I was in so much pain I prayed for God to just take me because I just could not function and live,  I am on the upswing now. I've-seen 17 providers-3 of those were functional. I encourage you to find a functional medicine provider at ifm.org. I would say diet is a big one-gluten free and possible dairy free could help. I would suggest an elimination diet where you cut most foods and then slowly add them back in while writing down what your symptoms are.  Cut processed foods (that's chips for me) and taking 5g of fish oil-liquid or pills per day seems to help me.  Yoga and Cryotherapy also seems to help.  I can't quite subject myself to cold plunges. i hope this helps you.

Martin Eric R
Martin Eric R
February 6, 2024 - 7:50 PM

Hi Jan,

I’m a 70 year old recently diagnosed with RA.  I’m trying many things – anti-inflammatory vitamins, stress reduction, and minimal OTC pain relief.  I would really be interested in learning more about any other non-medication approaches for controlling RA.  Thank you.

Martin

Melissa R
Melissa R
January 16, 2024 - 6:46 PM

Hi everyone,

I'm new to this group. Looking for more support and connection with people who get it. I struggle with the invisible aspect of this disease, not wanting to complain, but need support.

I was diagnosed with RA at age 22, more than 30 years ago. I had good luck with Enbrel till Covid, now trying diet changes (gluten and dairy and sugar free as much as possible) and herbal stuff.

My New Year's resolution is to get back into water aerobics. Does anyone in the Denver, CO area know of a good warm pool with aqua aerobics?

Cheers,

Melissa

Mary Ann M
Mary Ann M
April 21, 2024 - 1:42 PM

Hi Melissa

I know! It is "invisible," right? So, when I try to talk to people about it, I just get blank stares because I "look" healthy. People need to know that not all diseases are visible 👀. Some people are really suffering inside physically and psychologically. 

Bonnie B
Bonnie B
January 10, 2024 - 7:55 PM

Happy Hump Day! I just joined this group today to hopefully help and get help from others.  I have been receiving treatment for my RA for over 10 years and it has been having more flare ups, more medication and more pain.  I want to find a way to help myself with better self care without feeling like my body has been abandoning me.  I must find a way to keep my "can do" attitude in spite of my health issues.  I want to know how others have been able to keep a positive attitude, keep working, provide self care, and love my body where it is at. 

Michelle L
Michelle L
January 10, 2024 - 6:47 PM

I just joined today. I was diagnosed about 13 yrs ago. I am trying to deal with the diseases, grief, and loneliness. I am hoping to find some help here and some people to connect with outside of the group. Please help me guys. Thank you 

Mary Ann M
Mary Ann M
April 21, 2024 - 1:57 PM

Hi Michelle

You said you're dealing with diseases, grief, and loneliness and that's so hard. I pray things have improved since you posted in January. I started working at my local elementary school as a substitute teaching assistant and it has saved me. Working with the little ones lifts my spirits and makes me truly happy. I'm retired and am doing this part-time. If you can, it benefits mental health enormously to stay busy. How are you doing now?

Mary Ann M
Mary Ann M
April 21, 2024 - 1:57 PM

Hi Michelle

You said you're dealing with diseases, grief, and loneliness and that's so hard. I pray things have improved since you posted in January. I started working at my local elementary school as a substitute teaching assistant and it has saved me. Working with the little ones lifts my spirits and makes me truly happy. I'm retired and am doing this part-time. If you can, it benefits mental health enormously to stay busy. How are you doing now?

Karen H
Karen H
January 4, 2024 - 10:59 PM

I just joined this group today and am looking forward to being part of a group of people living with RA.  I was diagnosed almost 2 years ago and have been on hydroxychloriquine since the diagnosis.  Until recently, I was blessed with being mostly "asymptomatic".  Lately, I have had a good deal of pain and swelling in my hands and feet.  I'm noticing more fatigue than usual and am wondering what will be coming next.  I don't know what to expect even though I've done a lot of online research; I may be information overloaded at this point.  I find myself feeling a bit down.  Just wanted to introduce myself and say hello.

Kim A
Kim A
February 14, 2024 - 1:15 AM

Barbara C
Barbara C
December 27, 2023 - 9:35 PM

Hi, just joined this group, and was hoping that someone has used a more natural way of managing pain.  I have been on every medication out there for RA and is very concerned about the side effects.  I have been off the RA meds for about 6 months now and is managing the pain with low dosage of predsonine to function on a daily basis.  I am getting ready to retire and medicare does not cover any of the RA mdication so I would not be able to afford. 

Jan W
Jan W
January 30, 2024 - 2:57 AM

Hi Barbara - I just joined this group and read your post from December.  I am doing hypernourishing - it's explained on Dr. Brooke Goldner's website - she healed herself of lupus and kidney disease with her protocol and it has definitely helped me already.  I am also exploring other alternative and complementary therapies for RA.  

Juliet  L
Juliet L
December 31, 2023 - 8:19 PM

Hi, Barbara! I just joined today and saw your post. I am on Medicare and was prescribed Xeljanz, but couldn't afford $12,750 for 30 days at 5 mg. twice a day. I was able to qualify for 'Medicare Extra Help' and they covered the full cost. It also covered the $700/mo I pay for inhalers. Maybe you've already looked into it, but I should have applied much sooner. My best to you. Happy New Year!🙋‍♀️

Sheri H
Sheri H
December 12, 2023 - 2:12 AM

Hi All,

I've been living with RA for 5 years and still struggle with medications that don't work that well and the worry of how these meds affect my body long- term.  Would anyone in the Chicagoland area like to meet in a group and exchange experiences about RA? 

Jason G
Jason G
December 4, 2023 - 6:26 PM

I am new here and was just diagnosed with RA and lung disease.  I am thankful that you are all here and I am not alone. What to do next is what is spinning in my head.  My career and life have come to a hault.  

Juliet  L
Juliet L
December 31, 2023 - 8:29 PM

Hi, Jason! I know exactly how you feel. I have been living with NSIP and ILD for 20 years. What is your diagnosis?

They have treated me with large doses of prednisone because it's the only medication that keeps my sat rates out of the 70s (most of the time). Of course I've complained about joint and muscle pain for years, but my RF and CRP are always negative. Literally, months ago I was finally diagnosed with Seronegative RA, CPPD, and several spinal problems. It is a lot, so I relate. I would love to connect and share advice on positive actions and strategies. Happy New Year!

Deena M
Deena M
November 18, 2023 - 2:42 AM

Hello.

I ,'m 45 y.o. female and was recently diagnosed with RA. I am also new to this site and finding a support group. I don't exactly know where to begin, but ... I've been reading and reading about RA and I'm in information overload mode. I'm overwhelmed. The most recent challenge I've been having is numbness and tingling in my hands when I sleep. It's enough to wake me up. Is this normal? Has anyone experienced that or something similar? If so, does anyone know what the cause or a possible solution to it is? 

TIA

Paige B
Paige B
April 20, 2024 - 4:39 PM

Thank you for sharing this.  I have had numbness and tingling at night and was not sure if it was related.

Juliet  L
Juliet L
December 31, 2023 - 8:52 PM

Hello again, Jason. I hope you saw my lengthy reply to Tia. Maybe there is a take-away from my mistakes. I hope you are feeling ok today. Take care.

Juliet  L
Juliet L
December 31, 2023 - 8:49 PM

Hi, Tia! Happy New Year! I'm not sure if my problem is the same, but I want to let you know my experience, just in case.

So, I will be 60 in a few weeks. I have been ill all my life, diagnosed with lung disease at 40, recently with Seronegative RA and Spondylitis and Sponythesis (all the types of spinal arthritis). I have been telling doctors about the numbness and tingling for years. They always blame it on my medication. It became so severe in hands, feet & legs that I sought out a spinal surgeon. Tests (CTs and MRIs) confirmed multiple areas of spinal stenosis. She ordered surgery that my pulmonologist isn't sure I can survive.
 

My advice, don't wait to talk to a spinal specialist. She also told me that arthritis makes bone look more dense than it really is -- so don't trust your DEXA results (like I did). Even my UCLA rheumatologist (from STANFORD) didn't catch my stenosis. I have Medicare but I was able to make an appointment without a referral. There are treatments if you can find the right doctors, and get the right diagnosis soon enough.
 

Please let me know how it's going. My best to you!

Jason G
Jason G
December 4, 2023 - 6:24 PM

I experience this all the time.  I was just diagnosed recently too and am having all the same symptoms.  I am new here and still learning about this .  I am just glad we are  not alone.  It is nice to know this site and people are here.  Thank you for sharing.  I am still learning , but am open to anyones thoughts on what to do next.  Long road ahead and doing it alone is not fun. 

Deena M
Deena M
November 18, 2023 - 2:42 AM

Hello.

I ,'m 45 y.o. female and was recently diagnosed with RA. I am also new to this site and finding a support group. I don't exactly know where to begin, but ... I've been reading and reading about RA and I'm in information overload mode. I'm overwhelmed. The most recent challenge I've been having is numbness and tingling in my hands when I sleep. It's enough to wake me up. Is this normal? Has anyone experienced that or something similar? If so, does anyone know what the cause or a possible solution to it is? 

TIA

Deena M
Deena M
November 18, 2023 - 2:42 AM

Hello.

I ,'m 45 y.o. female and was recently diagnosed with RA. I am also new to this site and finding a support group. I don't exactly know where to begin, but ... I've been reading and reading about RA and I'm in information overload mode. I'm overwhelmed. The most recent challenge I've been having is numbness and tingling in my hands when I sleep. It's enough to wake me up. Is this normal? Has anyone experienced that or something similar? If so, does anyone know what the cause or a possible solution to it is? 

TIA

Trish B
Trish B
November 12, 2023 - 8:35 PM

Not sure how to best get involved but I'd like to! I was dx with RA in early 30s, now late 30s and I understand a bit more, but still feeling the symptoms on a daily basis and looking to connect with others who "get it". I'm exploring a healthier diet and take med (hydroxychloroquine) my rheumatologist recommends. Finding it hard to exercise, mostly mental to be honest! Looking for ideas for what others do. Things that work well I've noticed is ginger tea, walking outside laps in my neighborhood for a bit, getting a massage focused on challenge areas. I also find epsom salt baths are really nice (I'll try to do them in the morning to up mobility for the day) and then trying to be kind to myself when I need to rest. I'm reading your posts too! I'll try to reply to some, excited to hear what people have to say.  

Autumn J
Autumn J
November 3, 2023 - 11:38 AM

Hi, new here. I have had arthritis for over 10 years.

Lisa R
Lisa R
November 1, 2023 - 11:04 PM

Here is the link for tonight's meeting

https://arthritisfoundation.zoom.us/meeting/register/tZwtdu-srD4tE9W8tEVEmslw_g22-eqaPrZu

 

Trish B
Trish B
November 12, 2023 - 8:37 PM

Not sure if there are meetings or if the support is through chat/posts? Just getting acclimated and thought I'd ask in case someone knows!

Ciaran O
Ciaran O
November 4, 2023 - 11:12 PM

Will there be more meetings? Thank you

pat w
pat w
October 12, 2023 - 12:54 PM

Hi..I have had r.a. for about 10 years, due to a sore because of Covid I am now off off of all my medications.  My mobility is very impaired.  I swim daily, but sadly that must stop, due to the change in weather.  I am looking for a good, but interesting exercise program,  P/t is not an option at this time.  Depression is a real problem.  If anyone has a good idea please let me know.  This is my first experience with a chat group and I wonder what I should post.Thank you

Suzanne M
Suzanne M
October 9, 2023 - 4:40 AM

This is my first experience with joining an on line support group. What I would like as well is an in person group. Any ideas? 
I am in Nassau County NY.

Jen F
Jen F
September 16, 2023 - 9:04 PM

Ok, I just posted before reading other posts and was perhaps too vague. I've recently been diagnosed after 6 yrs of confusion, depression and minimizing docs. I found a wonderful doc - but now that the pieces are coming together about how all my symptoms come from this one disease- I feel very alone in it. Online groups would be so helpful for me but do not know where to look and find.

Jen F
Jen F
September 16, 2023 - 9:00 PM

Are there online , peer lead support groups?

Elizabeth  Z
Elizabeth Z
September 3, 2023 - 11:21 PM

Hi Everyone ! My name is Liz . I was diagnosed with RA and Fibromyalgia about 8 months ago. I have seen a few drs and working on diet changes. I have seen some changes with diet change but its so hard to stay on track. Anyone have any relife with diet change? I would love to share some recipies that I have created if anyone is interested in them =) 

Trish B
Trish B
November 12, 2023 - 8:42 PM

Elizabeth, I will take a recipe post! I just bought the book, anti-inflammatory diet book: https://www.amazon.com/dp/1623159040?psc=1&ref=ppx_yo2ov_dt_b_product_details. Maybe you are interested the link is amazon but I also got it from my library first to see what it was like. 

I'm  slow on making changes but I'm also getting a healthy meal subscription to just help me get started (it'll send you snacks, meals with easy prep). I have arthrisis in my hands and so meals are TOUGH, I don't like chopping/standing cooking for long so this is helpful. If people are interested I can post the link to what I use here as well. 

Joanna G
Joanna G
August 31, 2023 - 9:35 PM

Hi all, any suggestions for pain management outside of medication? 

Trish B
Trish B
November 12, 2023 - 8:45 PM

We have a local farmer's market and a woman had a stand with CBD lotion to ease muscle pain. I don't use any other CBD products so I asked her a lot of safety questions before buying and used that day when I got home. It was really nice and I liked the smell (mint/winterfresh). I don't know if you can look into CBD lotions but I was skeptical but found my lower back and hand pain was eased. My other thought is epsom salt baths if you can. Put a lot of salt in! I did for awhile but didn't put enough to make it worthwhile. 

Autumn J
Autumn J
November 3, 2023 - 11:40 AM

I don't even get pain meds. I take tylenol. My doctor says to. But I still hurt.

Dee G
Dee G
August 31, 2023 - 11:05 AM

I'm just six months into a definitive diagnosis of RA. I have dealt with OA for 30+ years, I have bilateral knee and shoulder replacements to prove it. With the recent RA diagnosis, I have weaned off of a 25 year Celebrex habit. We tried Plaquinil but it did nothing. Now I am two months into leflunomide, which I think is helping some but I can't decrease my prednisone any further that 10mg daily or I flare. How long did it take you to find something that really helps?

Trish B
Trish B
November 12, 2023 - 8:48 PM

Hello Dee, I don't anything that helpful to write other than I get it! Finding the right meds so hard! I've been taking Plaquinil for almost 2 yrs and I'm so unclear if I'm supposed to notice a difference or not. I think maybe a little in my joints? It's hard to tell and then I wonder if it just more preventative. I'm kinda bummed out because my anti-anxiety med for stress that I was on is on the "counteracting list" and I have a different SSRI that's not very helpful. All in all I'm taking two "meh" meds and not sure if I should swtich. I have a new RA doc I'll see April 2024, I'll ask him but just posting here in case people have idea/suggestions!

Michelle W
Michelle W
September 10, 2023 - 6:20 PM

Hi. It took a years treatment and 3 failed medications and finally Kevzara helped mine to a fair degree. 

Leslie L
Leslie L
August 30, 2023 - 7:25 PM

I recently took a trip to the mountains and realized I couldn't do what I used to. Hiking, biking, etc. all difficult. 
I found myself in deep grief. Like someone had died. Me. Anybody experienced that?

Trish B
Trish B
November 12, 2023 - 8:54 PM

YESSSS. I get it! I feel that way too! With hiking, or gardening, playing with my kids, doing normal chores that now wipe me out physically, walking is even slower. I try to keep things a "day at a time" even though that probably sounds so contrite. I truly am grateful I don't have something that's a immediate danger, but the slow progression is sad because I feel it in my quality of life. I tell my partner I feel like 30 yrs older than I am and it sucks. When I feel like this I try to fall back on what I can do/still enjoy. For me that's walking outside, but yes it absolutely is grief because the life you thought you'd have isn't it anymore and it makes sense if you're sad or angry! I would just feel that and let it be. People out there are having the same experiences, you aren't alone in it. 

Tracy S
Tracy S
November 2, 2023 - 6:10 PM

Hi Leslie! I was just diagnosed in May 2023 and am 57 years old. I find the mental toll most difficult. I was already on depression meds for years related to a car accident and chronic pain. I'm angry with my new limitations ( I don't like it when people tell me what I can and can't do). I find my mood is down most of the time and crying almost ever day when I can't do something. My feet are the worst and was referred to a foot & ankle doc. She gave me a cortisone injection I'm my right big toe joint and padded both my shoes for the ball of foot pain. I live on the east coast of Florida and LIVE in flip flops, not the cheap ones, the ones made with good arch support and thick padding. My doc said "no more flip flops". I also love to walk on the beach several times a week, that's my "me" time. My doc said no more beach walking. I'm crushed physically and mentally. I don't feel like Tracy anymore and I can relate to how you're feeling. I'm reading a book, "A Patient-Expert Walks You Through Everything You Need to Do and Learn". It is her story through the years and her journey with RA. I can barely get though a few pages at a time because I bust out in tears as it starts with what you and I are experiencing at this moment. I feel uninformed, lost, angry and filled with dread. When we're you diagnosed and how are you dealing with the mental aspect RA creates?

Tracy S

Melyssa E
Melyssa E
September 26, 2023 - 3:58 PM

I'm sorry nobody responded to you sooner.  I think we all go through this "deep grief" feeling at some time or another.  For me the feeling seems to modulate from greiving the person I used to be to feeling grateful to be alive and finding joy in the everyday things.  There's no doubt that my world does feel smaller now than it did ten years ago but I'd still rather be in it than not.  I hope it helps to know you're not alone.

Elizabeth  Z
Elizabeth Z
September 3, 2023 - 11:13 PM

Yes I am going through the same thing. It is so hard when you are not even able to do those little things that bring you so much joy . 

Robert R
Robert R
August 16, 2023 - 5:23 PM

I definitely understand what some of you are going through, hopefully we can help each other.

I was in severe pain after changing  my diet not that I was not in pain, but change in diet may or may not have cauesed extreme flare ups. Time to see doctor.

I am going back to Mediterranean diet. I have been on Prednisone for 1 1/2 months now. Great difference in being able to move and work, which I could not do two months ago.

Now Doctor is looking to put me on Methotrexate very low doses and looking to start on Infusion drug. Drug administered evey two months.  I have put off for a month weighting the pros and cons. 

Have any of you had  experience with Infursion drugs ? 

pat w
pat w
October 12, 2023 - 1:06 PM

Robert,  I have been on various infusion drugs. They are not all the same and it took a number of different drugs over many years to find the right one.  So go ahead but don't expect miracles,  for me it was a journey, no an immediate solution.  Good luck

Linda R
Linda R
September 1, 2023 - 4:00 PM

I have had Remicade infusions every 8 weeks since 2002 and have had no side effects from the infusions. I also take methotrexate weekly and folic acid. My recent blood work indicated that the RA is under control, however, I still suffer from pain at times and have lost balance and have to use a cane or walker. 

Larry F
Larry F
August 29, 2023 - 7:13 PM

Robert - I've been on an infusion medication for 2 years and it has helped slow the progression a great deal. One needs an open mind to find what works. I was on Remicade, and it did nothing for me. My rheumatologist switched the med to Orencia and that is working well for me. My own experience says this is easy to say but hard to do for people in our situation,  and that is:  have patience. Sometimes my body screams in pain, and I know now what ever action I choose is going to take some time to impact the pain. Best of luck to you.

Marcia E
Marcia E
July 24, 2023 - 7:28 PM

Hi, My name is Marcia and I was diagnoised with RA, seronegative almost a year ago. I'm 71 and take methotrexate, 8 tabs once a week. I have really appreciated all of your contributions and have compassion for all of you. Recently I lost 10 pounds without trying within 1-1.5 weeks bring down to 112. I've not seen information on this but would be grateful for information or if you have experienced this as well. Also, is there a newsletter through the foundation, and if so, how do I sign up?

Thanks to all of you and may we strive to keep having a postive outlook in our journies.

 

Joanna H
Joanna H
September 10, 2023 - 4:26 PM

I have seronegative RA too.  I'm due for a doctor visit but I don't see the methotrexate working yet. I'm on 6 pills w/folic acid since April.   Honestly, prednisone seems to be the only thing helping. 

Frances P
Frances P
August 11, 2023 - 12:18 PM

Hi my name is Fran & i am 71 was diagnosed with RA in January of 2023. I am taken methotrexate 8 tabs & weaning off of prednisone my fingers are the problem The prednisone keeps my RA at bay but all the doctors want me off it. I have dropped 10 pounds since this all started but it's not the meds. I was on & still trying a plant base diet. I went cold turkey. The meds for me had nothing to do with my weight lost. The diet did it The diet did helped me cope with the pain until the methotrexate kicked in. I'm still working out what's the right meds for me. Good luck 

Gail R
Gail R
July 20, 2023 - 2:26 PM

I take Cimzia and recently complicity cut funding down for my copay assistance. I now have $2000 a month copay. Have been calling trying to find help. I was wondering if anyone had a suggestion on where is a good place to find coverage. I've called quite a few places with no luck. Any suggestion would be helpful 

Thanks

Gail

Nina R
Nina R
July 24, 2023 - 3:45 AM

I also take Cimzia and didnt know this could happen. I'll look around for you. Good luck ❤️

Nina