What if all my tests come back negative?

By rpage Latest Activity June 2, 2011 at 1:18 pm Views 912 Replies 8

rpage

Four months ago both my hands & fingers started hurting. I assumed I had over used them and that they were sore. Within a few days, the pain worsened and my fingers were swollen and stiff, especially in the mornings and if I used them. I also started feeling achy & running low grade fevers mostly at night. I went to see my pcp and he ran some lab work & everything but my esr came back normal. He gave me prednisone & tramadol to help with the pain. I returned 2 weeks later because I had to stop taking the prednisone due to stomach problems and the tramadol, I can only take when my pain is severe because it keeps me awake. My pcp referred me to a rheumatologist and he did more labs, but instead of focusing on my hands, he diagnosed me with fibromyalgia & told me that maybe my symptoms in my hands would just go away. I have a recheck with him in July. He gave me diflucen and that's it. Which I might add does not do me any good. My hands have not gotten better. Two spots on my joints have red sore areas which he said were just my phalanges? My endocrinologist believes my hands to be systemic especially since my thyroid is auto immune. I too believe I have RA. So what do I do? Wait a year down the road to be retested or wait until my joints are deformed? Second opinion? I hurt all over; my hands are sore, stiff and swollen, and all I want is an answer, a diagnosis so that I can get something for relief. I want to feel good again.

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Replies (8 replies)

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  • jcschrum
    jcschrum June 3, 2011 at 10:55 pm   

    I know how you feel. When I first started having pain all over, I too was diagnosed with having fibromyalgia. I wasn't sure that's what I had. I believe I had arthritis. Turns out I do have osteoarthritis, but at the time they didn't know. I'm still told I have fibro and I'm still having pain in almost all my joints. I'm in pain everyday. Last year I was also diagnosed as having Sjogren's which is another autoimmune disease. My bloodwork came back normal but I had some drs. that still believed I had it and suggested I have a lip biopsy done. It came back positive for Sjogren's. I was told that sometimes you can be seronegative, as in my case. I wonder now if I have RA and wonder if the same applies to that - being seronegative and still have it??? I don't know but I had different people ask if I'm sure I don't have it because of my symptoms. I know it's common to have more that one autoimmune disease. My bloodwork always comes back normal, though. I'm going to a new rheumy at the end of this month and most likely have more bloodwork. Let's see what happens this time. So far nothing seems to take the pain away. Some things lessen the pain somewhat, but not take it away. Good luck and if you're not happy with your dr. or results get another opinion. Sometimes you have to go through several drs. to find the right one. I had two drs. - one saying one thing and the other another thing. I ended up going for another opinion at the Mayo Clinic. The dr. there agreed with my original diagnosis of Sjogren's. I stopped going to the dr. that didn't agree even though my biopsy was positive and I had all the symptoms.

  • rpage
    rpage June 3, 2011 at 11:57 pm   

    We sound like carbon copies:) I plan on giving my Rheum a little more time before I go with a second opinion, but I'm definitely going to have a heart to heart with him next visit. I know it's difficult to diagnose something without the facts, but when he told me that maybe it will go away on its own, I was just blown away by how heartless that statement was for me. I agree about how the medications don't take away our pain. I'm sitting here now in so much pain that I can't sleep and I took my Neurontin a few hours ago. It's a new med my Rheum prescribed and I was hoping it might give me some relief so that I can get some sleep. Well I hope the best for you and everyone out there who experiences the same pain we do.

  • jcschrum
    jcschrum June 4, 2011 at 12:11 am   

    I was in a lot of pain today too. Good luck with the Neurontin. It didn't help me. Is it helping you? I can't even remember all the meds I tried. They either don't help or I have a reaction to them. Hang in there.

  • rpage
    rpage June 4, 2011 at 12:18 am   

    So far Neurontin isn't helping. I'll give it a little more time. I'm also taking Diclofen which doesn't do anything for me. I was taking Tramadol but it keeps me wide awake, so I can't take it at night. I'm allergic to flexeril. My pcp wants to try cymbalta, so that one is next. We are trying to stay clear of the narcotic pain relievers until I just absolutely have to have them. I hate taking pills! You hang in there too!

  • jcschrum
    jcschrum June 4, 2011 at 12:32 am   

    Thank you- I'm to the point where I'm back on narcotics. They do seem to help somewhat but they're addictive so obviously can't stay on them for long. I've never been on cymbalta. What type of med is that. I think I've seen it advertised on tv for RA??? I've been on flexeril patches and lidoderm patches and they help a little. Is Diclofen an NSAID? It sounds familiar. Probably been on it before. The NSAIDS don't seem to help me. Don't know why. My dr. once said that they probably do help but I just don't realize it. I don't want to take a med that doesn't seem to be helping me enough to make a differnce. Plus I have stomach problems and NSAIDS isn't good for that.

  • hobber
    hobber June 3, 2011 at 9:41 am   

    My advice is to be sure and keep your rheumatologist apointment. Since RA treatment is not an exact science he is trying the current treatment to see if it works. In the future he will do further testing and come upon a treatment that will work. Good luck.

  • rpage
    rpage June 3, 2011 at 9:28 pm   

    Thank you. I will be keeping my appointment and I know that in a few months they will retest me again. It's just so hard when you hurt & don't feel well all the time and it doesn't seem like anyone, including the doctor's understand. Just a frustrating time for me I guess.

  • hobber
    hobber June 3, 2011 at 9:58 pm   

    Yes, I know how frustrating it is, but trust me, before you know it the "good" days will outnumber the "bad". Thankfully you are seeking treatment early which will improve your prognosis.

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