Not RA? OMG, I'm terrified

Discussion in 'Fibromyalgia Main Forum' started by wendysj, Oct 15, 2009.

  1. wendysj

    wendysj New Member

    Hi All:

    I am so scared. I was doing well at the beginning of the year. Working full time, doing 15 minutes on the elliptical and walking my dog. I had bad days with fatigue and pain but I was holding it together.

    In late spring my joint pain started getting much worse. My hands/feet hand been swelling for almost a year. My rheumy diagnosed it as RA when a shot of steroids brought the swelling down.

    Now she says it isn't RA. I was hoping for RA, Lupus, ANYTHING! I need treatment... I want to go back to work! I've seen so many people here say there cfs/fm had gotten much worse over time. I chose not to believe that would happen to me because there is NO treatment.

    I am going to another Rheumy... I need at least 2 to tell me its the FM getting worse. I'm sorry, I know you all have he same problems or worse. I was just denying that this could happen to me.

    Thank you all for your time... I will get through this, I always come out the other side ok. I'm just scared right now.

  2. jole

    jole Member

    I'm glad to hear you're getting a second opinion. Are your hands and feet your main issues? Or do you have other joint pain?

    Actually, FM is more muscle pain than joint pain, although sometimes the pain can be bad enough to feel as though it's in the joints. But for most of us, it's definitely in the muscles. And the swelling of the hands/feet I don't think is that common for FM either. Maybe others here differ with my opinion?

    I hope you get your answers...and they are treatable! Let us know, okay?......Jole
  3. nah.stacey

    nah.stacey Member

    AAAAhhh Wendysj,

    We are so sorry for your scare. We pray that it really is RA and just a bad flare up.

    I often wish my diagnosis was cancer. Then it would be over one way or the other. I don't mean to sound maudlin, but it sounds like you obviously understand the implications of CFS/FM.

    Go for the second opinion and even a third until you find someone who will comfort you if it really is FM. A Dr. who understands this DD is rare and hard to find.

    We wish you well.
  4. wendysj

    wendysj New Member

    Hi Jole,

    No, the hand/feet swelling has been for over a year. I have TERRIBLE joint pain in my hands, wrists, ankles... even my knees and elbows hurt sometimes. I couldn't stir soup the other night. I have swollen eye lids, one of them droops - the left one. Low grade fever, muscle pain, eyes sting (need to rub), weakness... the list goes on.

    Thank you for responding. I'll definitely keep you updated.

  5. wendysj

    wendysj New Member

    Hi Nah.stacey,

    Isn't it crazy we are hoping it's RA. I hate that for all of us.

    I know what you mean about cancer. The docs removed a lymph node of mine a few years ago. I was hoping for cancer... but they just found an infection that couldn't be named. I was actually disappointed.

    I will keep searching. I'm a fighter but sometimes it seems overwhelming. I know you all know what I mean.

    Thank you for your message. It helps to know that there are others who feel/think the same way. I'm sorry you're all sick but I'm very happy to have others to talk to about all this.

  6. Nanie46

    Nanie46 Moderator


    Please keep an open mind and consider a chronic borrelia burgdorferi infection as the cause of your symptoms and illness.

    Please read the following paper carefully...symptom list p 9-11, symptom info for coinfections p 22-29.

    Borrelia burgdorferi should never be ruled out with just a negative test, which is exactly what most Dr's mistakenly do...leaving many, many people undiagnosed and untreated.

    You FMS and joint pain have a cause and this complex bacterial infection could be it.
  7. Spacey

    Spacey Member

    FM can cause sore joints, tendon ligaments and muscles along with all kinds of other stuff. Many people do get swellings. If you have a book on FM it would tell you this. Everyone's different. Spacey
  8. FibroFay

    FibroFay New Member

    I'm glad it wasn't RA. But, there are many different types of Arthritis. I'm sure you'll get a correct diagnosis if you keep looking. It's really the pits, isn't it? Hang in there!

  9. satchya

    satchya New Member

    My primary care doctor was SURE I had lupus and/or RA and sent me to two different rheumatologists trying to get me the right tests to prove it so that I could get started on the correct treatment. All of the symptoms for RA were there.

    The first rheumy I went to was very sympathetic and had great bedside manner--right up until all my tests came back negative and then he said "well, there's nothing wrong with you, I think your pain is probably just being caused by repressed anger or sadness issues" HUH?

    So, devestated, I went back to my primary care doctor, still in pain all over, still fatigued, still so sore in my joints I couldn't open a jar, could hardly button a shirt, so feverish feeling and achy and in pain all over. So she sent me to a different rheumatologist (she was NOT impressed with the reaction of the first one and swore she'd never send another patient to that quack again. LOL)

    The next rheumy ran even more exhaustive tests, and did x-rays of my hands and feet, etc. The tests all came back negative again. But what she DID give me was finally a diagnosis. Fibromyalgia. And I was certainly not the first patient she'd had with that sort of presentation. Mine is a constant all over ache/burning pain, but when it flares, it flares with symptoms JUST like RA.

    At first I was so depressed that it wasn't RA. I felt like all of my family and friends were upset at me that I couldn't just "begin treatment" and get better and back to being the old me. And I was upset that I didn't know when this pain would ever end.

    But now that I've come through most of the stages of grief, and now that my primary care doctor and I have come up with a "cocktail" of six different drugs that I take daily that are helping me live a somewhat normal life, I am so, so, so grateful that what I have is fibro and not lupus or RA or cancer, or etc., etc.

    RA can deform your joints, Fibro will NOT do that. Stop and think about that. Stop and try to picture your hands all gnarled up. Pain is one thing. But people with RA have pain and deformity also. They have a double whammy. RA treatment drugs are nasty, nasty. I'd pick fibro over RA any day. Actually I'd pick neither. But we don't get door number three as an option ;).
  10. wendysj

    wendysj New Member

    Hi Satchya,

    Thank you for sharing your story. I was happy to get to the end to know you are managing your health well. I hope that continues for you!

    I have had the x-rays and blood work for everything too. My RA factor has consistantly been 17 for several years but it never goes higher than that. My Rhuemy was 90% sure it was RA and clinically diagnosed it as such.

    I took Methatrexate for 4 months. It only made me feel worse. I hope that I will now start to feel better and better from not taking it.

    The CRAZY part of this is my Rheumy gave me PLAQUENIL at this last visit. She said I did NOT have RA or Lupus but gave it to me anyway. I've been taking 200 mg a day since Tuesday and will continue to take it until I see the doc for the second opinion on Oct 28.

    I definitely feel better physically and mentally today. I will keep you all updated. Thank you again for sharing your story. One question, are you able to work? I think your picture shows your kids, right? I bet kids are a full time job too! :)

    Thanks again,
  11. satchya

    satchya New Member


    I am surprised your doctor has you on plaquenil if she doesn't think you have RA? Wow. But is it making you feel better? Maybe you do have seronegative RA? My RA factor has been 7 for several years now, and my sed rate is very low. So my rheumy has given up on thinking that I have even seronegative RA for the time being. I have received steroid shots twice during my worst flares, and felt much better within about 24 hours, and the feeling lasted for several weeks. Weird, huh? I really think my "version" of fibro is definately something of the autoimmune variety, it just isn't RA or lupus.

    I have been a stay-at-home Mom for 11 and a half years now, and have three kids. But I've done various work from home, including working as a freelance writer, and just recently I got certified as a Group Fitness Instructor. (That's a long story, kind of a crazy thing to do for someone with fibro, but it was a challenge I couldn't resist ;) LOL) I am lucky that my husband can support our family on his income, though, because I know I would not be able to hold down a regular full time job. I can't drive very far without setting off a flare. I have to take frequent rest breaks during the day. There are at least two or three days a week when I'm in too much pain to be of much use to anyone. So I really don't know how I would hold down a full time job.

    However, that said, I am able to take good care of my house and my kids. I have my fibro under control well enough with the meds I'm on that I can go to the gym frequently, take a hip-hop dance class one night a week, cook dinner from scratch multiple nights a week, keep my house very clean, do lots of laundry, take the kids to all their various activities, etc. It's basically like having a job that is very flexible.

    I'm going to list the meds I take, in case the information is of any help to you or anyone else on the board, I know it's taken me a lot of trial and error to come up with this "cocktail" and it sounds like a lot of drugs, and it may not work for anyone else, but for me it works. I dont' know how many other doctors would be willing to prescribe all of this together. My rheumy wouldn't. She rolls her eyes every time I visit her and she hears everything my primary care doctor has me on. She hates it. But it works for me. So I don't know what her problem is. Isn't she supposed to want me to be well?? And feel well? Some doctors have such a god-complex they aren't willing to let patients find their own way to health. I'm very lucky to have a primary care doctor who will sit with me for up to an hour per visit and is willing to do research and let me experiment to find what works best for me.

    Anyway, here is what I take every day--and by the way, I highly recommend a pill box that is divided into times of day if you're going to do this, I found I couldn't keep track accurately without one.

    5 a.m. (I wake up, take these, go back to sleep until 6:30 and then am able to wake up relatively un-stiff and pain-free)

    Tramadol 50 mg x two
    Topamax 50 mg
    Lortab 10/325
    Gabapentin 300 mg

    11:00 a.m. (I take this when I get home from working out at the gym, once I have some food in my stomach but before the post workout pain can start to set in)

    Tramadol 50 mg x two
    Muscle Relaxant (I have three different types I switch back and forth between to keep my body from becoming too used to them, either tizanidine, skelaxin, or norflex)
    Requip 1 mg (this is a dopamine agonist, very promising new research on this for fibro treatment)
    Lortab 10/325
    Gabapentin 300 mg

    2:00 p.m.
    Lortab 10/325
    Muscle relaxant
    Gabapentin 300 mg

    4:00 p.m.
    Topamax 50 mg
    Requip 1 mg
    Gabapentin 300 mg

    10:30 p.m. (bedtime)
    Tramadol 50 mg x 2
    Lortab 10/325
    Requip 1 mg
    Gabapentin 300 mg
    Ambien 5 mg
    Muscle Relaxant

    Now, keep in mind that I have built up to the dosage on most of these meds over a matter of several years. You would NOT want to start out at these dosages. And I know many of you are super sensitive to meds. I have the opposite problem. I usually have to take double a normal person's dosage of a medication before I see any effect at all. And my primary care doctor knows this, because she's been my doctor forever, so keep that in mind when you're reading about how much I'm taking ;). Anyway, just wanted to post that in case it would help anyone else.

  12. daylight

    daylight New Member

    Sounds very much like RA to me . RF and ANA can fluctuate . My RF is 16 and positive ANA was 1640. positive High ESR and C components for both RA and MCTD . When I first was dx with RA they said sero negative. But after a year the blood work changed to a RF weak positive (based on that labs stats). Plus x rays of hands.feet,knees,hips,spine all show damage. So don't rule the possibility of RA out just yet. Not that anyone wants it . The disease hurts like heck.
    My first diagnoses was FM and spinal arthritis. It took 5 years for the RA to get tested (bad doctors). But with FM only swelling doesn't usually accure but you can have joint pain along with muscle ectt....
    Most people with Fm have some other form of arthritis .
    I know how frustrating it is to know that you have a physical problem that is controlling your life and don't know what it is. Drives you crazy . But these thing surface in time.
  13. jasminetee

    jasminetee Member

    From what I've read here from other posters I would continue to get more opinions about RA and my own thoughts are that you may have Lyme Disease. Joint pain and swelling are the hallmarks of LD. I'd actually be very surprised if you have FMS.

    No matter how you slice it though, you're hurting a great deal and I'm very sorry to hear that. I hope you can get the correct diagnosis soon.

    [This Message was Edited on 10/17/2009]
  14. wendysj

    wendysj New Member

    Hi Satchya,

    Fitness instructor? Wow! That's awesome! I'm happy to hear you know your body and you're not afraid to do something that some people would look down on. I try very hard to has of "normal" life as possible. I hope to get back to work sometime soon too.

    It sounds like you're a great mom and wife too! I have a remission the early part of 2008 and I was MOST excited about being able to scrub my floors with a scrub brush! They looked great and I had SO much fun doing it! I also met my boyfriend whom I live with now. He and I are very happy. We have a dog, Marley. She's the best - I could not love her more if I tried. I too am able to cook and clean. I try to walk Marley as often as possible, probably 4-5 times a week.

    My meds have changed since the RA diagnosis and UNdiagnosis. :) I stopped the MTX and steroids. The Plaquenil I'm not sure about yet. It hasn't been a full week yet. I have noticed that my hands are NOT swelling though. I am trying hard not to get my hopes up yet though. I take Vicoden ES (7.5/750) for the pain. Sometimes up to 5 a day. Most of the time it's 3 a day. I take 30 mgs of Flexiril at night it really helps me sleep. Lexapro for anxiety, it really helps me too!

    It's great that you have worked out what's best for you. That's all we can do, I think. Enjoy what we can in life and not worry about things out of our control. Easier said than done sometimes.

    I hope you're having a great weekend. I'm actually feeling pretty good these past 2 days!

  15. wendysj

    wendysj New Member

    Hi Daylight,

    I hate that they didn't find your RA until there was damage. It's so infuriating sometimes that we are totally dependent on doctors to figure these things out. There are good docs but the bad docs make it hard for us to remember there are actually docs that care out there.

    I had x-rays that showed no damage. My RF number is 17 most of the time. They said it wasn't very high. I know RA is terrible... Sometimes I just want so desperately to have something that is treatable... That's crazy, I'm sorry. I just keep having bad thoughts of the FM getting worse and worse and worse and nobody can do anything.

    Thank you for your response and support. I will keep searching and update everyone as soon as I get any further information from the men/women in the white coats.

  16. wendysj

    wendysj New Member

    hi teejkay,

    A couple of people replied with the Lyme guess. Honestly, I've never put much thought into Lyme. I don't know why... I did go to an Infection Disease doc years ago before the CFS diagnosis and he found nothing. I have Western Blots done all the time by my Rheumy. I will definitely take the time to read up on it this week.

    I will keep you all updated. Thank you so much for your replies and support! It helps SO much to have strangers reach out and want to help. You are all awesome!

  17. hensue

    hensue New Member

    Hurt all over unless I pace myself. My joints swell in my fingers really bad and my doc was sure I had RA. No do not he has run it over and over. I am glad I do not like right now it is a little cold here. Probably not cold to some of you but today was up in the high 50ss I think.
    My fingers were aching at the joints and they swell and sometimes stay that way.

    They are not permantly disfigured like RA though, My fingers are long and slim and you can tell when a joint is swollen very easy.

    When I had my hands and fingers xrayed at the docs suggestion. It was my right had hurting and fingers. Found out I had a broke thumb and adjunct at the base of my thumb.
    I had just thought that was fibro too.

    My doc got on to me and said everything is not fibro. I had two ribs broke and was hurting severely about a year ago. Thought it was fibro.
    This pain is not easy but you will began to handle it when you figure out how. Most days anyway.

    I am so glad you are feeling better, no one wants cancer or RA it would be horrible.
    Take Care

  18. hensue

    hensue New Member

    is topamax for migraines i tried and it helped so much but had terrible side effects and had to get off.
    Tramadol was working good and now as soon as I take one I start to swell in legs and feet really bad.

    I wish they would give me loritab. I get mad they will not give me anything above a darvocet for friggin pain.
    I go to a pain clinic mind you.
    What does requip do I take wellbutrin sr something to do with dopamine. not sure what
    Gabapentin tell me what it is for and what it does please.

    Thanks for sharing i want to go to your doc maybe I could have a little life then.
    instead of nothing
    Take care
  19. I swore I had rheumatoid arthritis. My mother and brother have it, now my brothers tests kept coming back negative for a few tests until finally it showed. I suggested this to my rheum. dr. and he got irritated saying "you don't have rheum. YOU have fibro" JERK! he can be nice but alot of time not!
  20. daylight

    daylight New Member

    It may be osteo arthritis . But with a RF of 17 thats positives for RA . Kiaser labs say that anything over 15 is consider a low/high for RA in other words positive. RA doesn't start out with damaged joints so that doesn't surprise me that they are still ok. My joints started to curve only about 3 years ago and they aren't to bad yet. There swaning a little in the middle but the smaller bones under my finger nails are still straight. The middle bone are curve inwards and over slightly. Plus they are swollen . I do have the nodules and my arm and one on my hand. and a few near my spine (but that not the usual RA). RA is on predictable , some people like me can have it for years and with no damage and then a little bit at a time. But its always symmetrical .
    Now my right knee and hip is worse than my left.
    I did go through think that it was about 12 doctors or so before getting one that would run the right tests . The RD that diagnosed me was the head of rheumatology . Sometimes its good to go start to the top. But even he knew that I had more than just RA and of course he still felt that I had Fm ,raynauds and probable MS.
    Now the new GP think that its MS or Lupus a along with the RA. It's a vicious cycle.
    But with all that I can't take the DWARDS because of drug intolerance and allergy's.

    Hopefully soon they well find what is happening with you and hopefully you'll do well on the treatment. In the meantime try not to worry yourself to much. I know how hard it is not to worry or think about this 24/7 but its not health. Take an "me day " for yourself to unwind and forget all this stuff for a day or so. RA is bad but not everyone get severe deformity. Try not to worry sweets.

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