Newly Diagnosed Connect Group

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?

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 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

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?

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 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. 

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 

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 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.

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

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

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 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.

Are there plans to have events in the future for this group?

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

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.

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

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. 

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)

I Am Highly Passionate & Twelve Years of Professional Experience. My Professional Experience Mix In Functions “Administration & Secretarial Operations”, “Customer Support & Services”, “Guest Relation Operations”, “Visas & NOCs Processing”, “Travel & Protocol Services”, “Internal & External Communications”, “Sales & Marketing”, “Human Resource & International Recruitment Services”, “Logistics support & services”, to VIP's Visitor's and Delegations on their Visits and also Coordination with Concern GOP Ministries, Makes Me The Most Suitable Candidate With Diverse Experience. I Hold Professional Qualifications of B.com (Business Management).

With relevant most experience at Islamabad, Embassy of The United States of America Pakistan for almost 7 Years, Travel & Protocol Department for US Diplomatic Islamabad Mission Officials Visitor’s & Delegations and VIP’s for almost seven Years of Diversified Experience.

https://drive.google.com/file/d/1OflDlowsH8ZkzvnFBgYVXLLCfdbndQ-n/view

https://www.linkedin.com/mwlite/in/muhammad-suleman-ahmed-846883154

Please click on the link to Review My Attached Updated Resume For Your Reference & Consideration.

Best regards,

Shukria!

Muhammad Suleman Ahmed

Cell # 0092-344-5400-504

Email @ [email protected]

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

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.