It seems to be ALL my joints, worse in the hands fingers and hips. I take mobic and methotrexate. Is his normal?Others talk about flares, I do have days that are worse but more worse than not. I feel like a freak since i am sero negative and worry it could be a mis diagnosis. Any advice? I had worsening symptoms for 2 years prior to seeing a doctor. Now for a year with the diagnosis I dont seem to be much better. I have a hard time having to take meds also, i know some is denial but I feel like a freak. I think I am getting depressed. Since I am sero negative, I feel like I dont have the right to be in so 'sick' for lack of better wording,no matter how hard Itry to fight and stay active it hurts hurts hurts! Is this normal? I am an ER nurse for 20+ years and have never been sick a day in my life! I should know something but this all just has me freaked out. If I sit or stand too long, It is like my joints get frozen and I can hardly move. I am only 47. When i do move,you can hear me snap crackle and pop. I feel so humiliated.
Q: I am sero negative and still have alot of pain and stiffness.
Hullo just me,
IT IS NOT YOUR FAULT that you are sick. I know how hard it is to be the one in need after being a carer all you life, I was a counsellor for many years and always the helper although I had some health issues, I could push through them.
Since the ra monster struck, I have lost much of my lifestyle and had to battle guilt, I had to stop blaming myself, I did not choose this sickness, it chose me
Please look after yourself and let others help. I pray you get a definite diagnosis, when I did it was like a great weight off my shoulders, even though it is a nasty sickness.
Youre not a freak, I am sero negative and so are lots of others. There is some consideration now that sero negative may be a different, harder to treat form of ra, [I'm sure that cheered you up]
The best doctors treat the patient and not the blood test.
all the best.
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.
It is hard to believe its been almost two years since I posted that post! Sorry to say, I still am struggling daily and waiting for this "magic remission"! As far as sero negative being milder, I cant imagine worse! I am taking remicade infusions every eight weeks and am supposed to take the methotrexate injections but i just cant stay compliant with that part, It just makes me so tired and sick feeling. I stopped the mobic ( candy) and went back to pure 800 motrin but added some stomach pills to doing that (Prilosec). I take Darvocet for pain as needed and all the B vitamins and Folic acid you can think of.
I have learned to live with this better then when i first posted ( I was in such denial in the beginning of the diagnosis) I think i was grasping at hoping since I was sero negative it was just some virus that would pass. My hands have gotten much worse and my hips as well. Over the past few months, my ankles and feet joined in. Still we plug along and continue to get through the days with as little complaining as humanly possible though at times i know for me i could just quit and go to bed and never get up. Then again, if i am in bed too long it hurts, if i am up it hurts and if i sit too long it hurts..i am sure you know the drill. Anyway, to answer your question about the "mental" changes, at the time of my diagnosis and for that first year, i had awful forgetfullness could not think of names, and i would go into a room to do something and totally forget what i went in there for. I think once i started on the B vitamins this improved for me but i had a hard time distinguishing if this were from menonpause or from the RA or from all the medicine. I have moment still but am not sure. I actually blamed all this on my hysterectomy i had when i was 46, that was when all of this seemed to start once i healed from that, came the RA diagnosis. I still wonder if I had not had the hysterectomy if i would have had RA, I also had a Goiter with multi nodules appear between the hysterectomy and the diagnosis of RA. Hmm, mental changes. yeah. it still just sucks.
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 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
I was told all my tests are normal as well. It's hard to believe considering the pain I am in ALL of the time. I can barely hold the steering wheel when I am just driving to the local grocery store. I haven't been able to see the rheumetologist yet, but my primary doctor is pretty sure this is what I have. My grandmother was diagnosed at 28, a year younger than I am now. She was in an automatic wheel chair by the time she was in her 50's. I can't even hold my 2 year old son for more than a minute before I have to pass him off to his dad which makes me feel horrible and quilty because he starts crying for mommy to hold him. I am so tired and in pain and just want to be able to do the little every day things like holding the phone to my ear for more than five minutes without it sending stabbing pains down my arm. Since I was just diagnosed by my primary doctor and haven't seen the rheumy yet I have been prescribed vicodin and volteran for the pain. Neither really help and now I am constipated, which isn't a pleasant experience when your hips and lower back already hurt so bad you can barely sit down. My husband tries to sympathize but he can't really know what I am going through. I have always had a low white blood cell count and was tested for every cancer they could think of. RA is an autoimmune disease which explains why my white cells are so low. I wish I would have known that before they stuck that giant needle in my already arthritic back for the bone marrow biopsy.
It seems to me that more people are coming up normal on these blood tests than is said should. Every site I have been on has a long list of posters that say they were normal on the blood and still had RA. Maybe the medical professionals need to rethink their statistics on this one. It appears that RA isn't as easy as blood smears on a small glass slide.
I also come up negative, but was finally diagnossed 5 years ago after years of pain and stiffness, carpal tunnel, colonitis, sinitus, broncitis, asthma, thyroid problems (it also attacks organs eventually), etc., etc. My rheumy went by "nodulules" and the angles my fingers were turning. I take asulfazine and methotexate, regular exercise (which believe it or not, helps) and lots of stretching learned from Physical Therapy. Don't do too little or too much, but definitely need to keep moving every part of you. I should be doing humira or remicade, but I'm satisfied with my current status and don't want to change anything right now. Prior to the diagnosis, I would find mysef unable to drive, button my clothes, stand on my feet for more than 20 mins. at a time during flares. It was hell. No mater what meds you take, be sure to keep moving and eat healthy.
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Wow this could be the "Nurses with RA thread" I know exactly how both of you feel. I am seronegative and my CRP and inflammation markers always come up negative but after 3 years of this, I know RA has to be the answer to what is wrong with me. I have finally made the decision to stop trying to work ---I am a L&D RN--because it takes such a toll on me and I have realized it is dangerous to my pts to try to take care of them and not be able to physically do what it takes. Also, I am completely incapacitated for 3 days after one 8 hour shift. I finished applying for disability yesterday and know it will probably be a long shot but know the Lord is in control. I am in constant, unrelenting pain, despite pain meds, MTX and humera. I am stiff all day long and my sons do most of the housework. It is very difficult to learn to live this life---I have always been full steam ahead ---working 2-3 days a week, homeschooling my sons, active in church and homeschooling community and now I am so limited as to what I can do. I have to choose what 1 activity I want for my family for the week because that is all I have the energy to do.When the "experts" say seronegative RA is milder and you should be happy that your RF factor isn't there, they weren't talking about me. People say they don't know how we cope---there isn't any choice in the matter, and the truth is --I am not coping very well --- I just try not to complain so much because it is fruitless.
Do you have any mental effects from this disease? I find myself with such a decreased memory and have difficulty finding the right word or being able to concentrate? It would really help to know if others experience this because I haven't seen it addressed anywhere else. What do you take for the pain? Is your rheumy aggressive in pain management?