I am sero negative and still have alot of pain and stiffness.

Hi there!

Like you, I also have sero-negative RA. I second guess my diagnosis constantly, but the pain I feel snaps me back to reality quickly. Although I feel that I need to defend myself sometimes, like "even though the RF is negative I AM EXPERIENCING MASSIVE PAIN!!!" I dont like the way that feels. I too have very few good days despite all the drugs I am taking. My doc has tried multiple combos and apparently we still havent hit upon the winner (right now its Methotrexate, Lodine, Orencia). My husband commented that I have 2 speeds....bad and worse. Its the truth. I am 34 years old with 4 kids and  I feel so unable to shake this disease and get on with being young. I have always been healthy and only ever went to the doctors for allergies. I feel so overwhelmed and unsure about every move I make, every new drug I swallow and every new creak or groan my body makes. I was also a nurse, (I guess I technically still am, I just cant work any longer). I loved my job as a NICU nurse and that has been one of the hardest things to let go of. When your fingers can no longer grasp syringes,  attach a vent, or diaper a 1lb baby you are pretty useless on the unit!!  It wasnt just a profession, but a way to contribute to our financial well-being. This god forsaken disease effects every last part of your life, like when I cant color with my 4 year old or when I have to make my 14 year old chop veggies for dinner. I feel sad and so DEPENDENT, and I think thats the worst of it. I just want my life back...i havent fully come to terms with the new direction I have taken. I guess thats why I find myself here on this website...looking for answers and support.

 All I can say is that my doc says that there are just some people out there who dont have a positive RF, but by all signs and symptoms there is no denying that we have RA. I have to remind myself of that all the time. I keep getting tested every so often to see if I convert, but I dont suppose that will really matter in the scheme of things as I have the pain, stiffness and limitations regardless of that one lab result. This is my life and I will manage it. So will you, there is no other choice. I wish you the best and as a nurse you know to keep searching for more info, find the best doctor and advocate for yourself. I am sorry that we are in this mess called RA! Good luck to you, I am sure better days are ahead.

Hello,

TGh

I've only been seeing a rheumy for a year now.  Before that, my primary docs decided to play specialist and messed me up more.  I didn't trust doctors, so I didn't go to one for at least a year.  The pain was so bad, I just drank a lot.  Not good but when in that much pain, one does anything to get out of it.

I'm on remicade now but couldn't do methortrexate because my body hates it.  I get so sick and it lasts for days.  I take asulfazine as I had inflmatorry bowel, which the primaries calld 'gas".  Not cool for a woman to look pregnant.  The meds took a couple months to work but they did.   Not only that, they took away the sores I would get in my mouth each month.   A lot of my symptoms mimic other autoimmune diseases, like lupus.  I have also tested positive for ms, which my mom and her mom both had.  I  get scared because it says not to give remicade to patients with ms.  All I know is that I brought a radiology report in showing the lesions in my brain and the diagnosis from the radiologist. 

I didn't have a positve RA antibody in my blood but from what I understand, 40% of people don't have it.  The only thing that shows up is whatever leads them to believe I have bad inflammation.  My hips feel like a nail gun is going into them.  My fingers are a mess but my back, that low joint, sacral(?) don't know the exact spelling.  I swell up so badly in my lower back and do get injections of steroids there. OUCH.  Just last visit, I got a shot in my hip.  Oh, I'll have to think hard about doing that again.

Because my RA seems to revolve around my estrogen flux, it seems I'm always in a flare.   Ok, I do have some good days and am happy for them but then I get depressed because tomorrow might suck.

Warm Regards,

Kelley

I am also sero negative.  New at this, but my rheumy had no problem diagnosing the RA.  He also said that about 30% of the RA patients did not show positive.  He is a specialist with many national credits.  I began a "flare" in February with trouble walking.  First diagnosed with achilles tendonitis.  When the foot specialist x-rayed, he knew from the xrays I needed to go to the rheumatologist.  It took me another month to get in to see him.  He ran all the tests.  The bone scan was the test that showed the most.  When he diagnosed the RA, I asked which joints were involved.  He asked me if I saw the scans?  I said I did.  He said all the red areas at the joints were inflammation and all the ones I had complained about plus a few more were involved.  It has taken me two months to head the right direction on meds.  The MX did not work for me...too many side effects. All the swelling in the joints, especially ankles and knees, got worse.  Depression set in with the great amount of pain.  I am now using Humira injections, plaquenil, Vitamin D, B12, cymbalta, and pain meds.  He injected me last week with steroids.  The swelling immediately dropped, and for the first time in six months, I had a good week.  I don't doubt his diagnosis.  Everything I have read about sero negative makes it very real.  Actually, there was one article that said sometimes in the early stages you test negative and as it progresses, it converts to positive.  I don't have any experience to prove that.  My daughter is RA positive.  Our symptoms are exactly the same....a little different in which joints.  Her hands are more troublesome and my feet are the most troublesome.  We both complain of the hips.  Her rheumy (different town) has treated her very conservatively, and she is not getting any relief yet.  I hope this helps you and I wish you the very best.  Dianne

Hi there, I am also sero negative, and have been this way for sixteen yrs, although it took six yrs for it to be diagnosed correctly, Ive done some research on the internet, and im lead to believe that there can be a huge difference in the way the disease pans out over the yrs,between the neg/pos diagnose's, Although i have limited damage to my joints,IE swellings constantly around my knuckles, and swollen knees,nodules on the wrists, i feel like im in constant pain, Im taking Leflunomide 10mg as methotrexate made me poorly, Im also taking a low dosage of steroids at the moment due to my knees swellings up *Not Fun* Most days im confused by my RA, I cannot truly say ive felt in remission,I feel like im always entering a flare up stage, Ive never felt like a fraud when it comes to being diagnosed with sero neg though, because the proof is in the pain i feel, how much more real can it be?

Im lucky that ive been abe to have two children, and feel the time spent pregant with them has helped my RA,also having another focus, yes constant worry to, helps me deal with my own problems...And keeps me active to:) I dont believe my life is over with this ill'ness, Im 35, and have plenty to look forward to, I also believe the early yrs are worse,due to the fact you find it hard to deal with RA,Once you except this is you,it doesnt go down hill from there, it actually makes you stronger, My advise would to try gain as much support around you as you can,and pace yourself,know your limits,mentally emotionaly,absorb as much info on self help, IE pain management,exercise,dont isolate yourself, and above all, keep positive......

Rachel xxx

i don't have an answer...i have a question..HOW IN THE HECK DID YOU GET DX WITH RA IF YOUR BLOOD WORK IS NEGATIVE? i have all the symptoms, but can't get any doctor...rheumy at john's hopkins as well, to dx me.

I am also a nurse and have stood on my legs and feet for years for long periods of time. I have problem with my muscles and joints aching and I am only 30. I have been to the doctor several times regarding this and all my labs come back negative. I am being sent to a rheumatologist, but feel it will be a wast of time if my labs are negative