For those of you who have dealt with getting and accepting a Fibro diagnosis, how do you know when you just have Fibro versus having Fibro that accompanies something else? Has anyone started out with a Fibro diagnosis and later became diagnosed with something else?
I ask this because I've been suffering with a lot of issues for many months now - I've seen a rheumatologist, an allergist, a neurologist and if I can't get my anemia under control I'll end up at a hematologist soon. My regular doc knows something is wrong with me, but none of my symptoms with any of the specialists is "significant" enough to get a diagnosis of something that might actually be treatable. I have consistently had elevated bloodwork indicating generalized inflammation (sed rate) and recently I had a rheumatoid factor come back slightly elevated. Problem is, the rheumy says it's not "significant" enough to warrant a diagnosis, and kind of off-handedly said I had fibro, because "that's just what we call it when someone has chronic pain", like it's not even a real illness! Fortunately, I don't have to go back to him, but I'm still lost. I have seizure-like, jerking episodes when I'm flaring, which is not RLS and probably isn't epilepsy - instead the neuro thinks it's myoclonus, which is still a neuromuscular problem. But myoclonus isn't a diagnosis it's a SYMPTOM - problem is, a symptom of WHAT? Of fibro or something more? I have distinct triggers for my symptoms - sunlight, heat, overexersion, hormones - that lead to my flares. I also started getting premenstrual migraines, after having my migraines under control for years, and these always accompany my myoclonic episodes. And right now, I'm in the midst of probably the worst flare-up I've had in months - which ironically seem to coincide with my allergies getting out of control. I feel like my whole body is inflammed - my lungs, my joints, my veins, my muscles - and nothing is helping! Sigh.
The problem is, I don't know if I'm content with saying, yes, it is only fibro, and that's where I need to stop, because as of right now it's not under control. I take Cymbalta, just added Wellbutrin, Klonopin for my myoclonus, Topamax, Frova for migraines, Nasonex and Allegra for allergies, just had a 7 day dose of Singulair, and Voltaren for pain, which is okay for minor inflammation but not for my bad flare-ups each month - all of this, yet I still had my worst flare in months, mainly because of my allergies getting worse! I still feel that the chronic inflammation, rheumatoid factor, anemia, neurological issues, and allergies as a trigger are pointing to some underlying autoimmune problem - even the allergies make sense if it's related to my immune system is going haywire. Because when I get flare-ups, I get flare-ups of EVERYTHING at the same time. But is this truly ONLY Fibro? I guess I always associated Fibro (as the only diagnosis) with having normal bloodwork, and it's been hard for me to embrace this as a diagnosis knowing my bloodwork is still abnormal, just not "significantly" abnormal (according the rheumy), which is a crock because it's significant to me, and I can tell a difference in how I feel based on how elevated my sed rate is. Mind you, my rheumy prescribed NONE of these meds - he just gave me some sleeping pills, like that was going to solve everything...grrrr.
How to you figure out the best treatment for your Fibro when you have so many things going on? And does anyone either have or think they have other issues in addition to Fibro? I cannot believe how bad I feel now, after not having a flare-up this bad since April, so I know I need to do something, even though I'm really tired of doctors right now.
The following user gives a hug of support to Minerva78: mgm55 (02-27-2011)
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Hiya Min, I was dx in Feb 2007 with fibro and yeh, the rheumy sounded off hand with me, gave me a leaflet and discharged me from his clinic. Everything else I've found out for myself from other sources including these boards. Although I've not been dx that long, the symptoms etc that you have described do sound like fibro is having a fine old dance with you, from what I've read, the autoimmune system is involved, the allergies, may be intolerance, those two get confused apparently. If inflammation is present than it makes sense that your blood work will reflect that, a few of the girls on here also have the 'jerks' that you describe, as I do at times, my doc says I've probabley got MS, but the neuro says there is not enough clinical evidence to make a firm dx of MS. I'm sure you will get a lot more responses soon, please try not to stress too much, I know that is easier said than done, but fibro loves stress as I'm sure you know. I'm afraid that finding the right treatments and meds for you is sometimes a long haul as you have to do one thing at a time. Hang on in there Min, I'm sorry that I can't be more helpful, Warm thoughts to you Min, hoping you find relief very very soon, take care Snoozyowlxx
doctors can be such dorks at times. your elevated counts do matter. however, you are fortunate they are slightly elevated. you can have alot of things in your body and have fibro. i do. won't bore you with the list. it's long. point is, this is your body and you have every right to tell the doc what you expect of him/her.
what my doc said to me was yes, you do have r.a. fortunatly you have the kind that is not as crippling and progresses at a slower rate.
when you have the trembling thing don't fight it or try to stop it. only makes it worse. i relax and breath and just let it happen. it's kinda trippy. actually i get into the amazing aspect of it all.
i also have allergies. sometimes a flare will come with, sometimes not. trying to figure out a why left me exhausted so i quit worrying about why and just got on with how. how do i live my life now. and i found it. we all do.
the best treatment is exercise. for my fibro, strokes, r.a., lupus, all the goodies that live with me. i stay busy and refuse to cave in to emotions that would lead to me not being me. worry is a waste of precious energy, so i don't.
i have never found a magic pill, and believe me, in the beginning i was searching hard. what i did learn along the way was to keep my body moving no matter what. i spent 6 months in a wheelchair in the beginning. now i walk daily, got my weight down, dance and kayak. gave the wheelchair away and said not yet old girl, not yet.
for myself what i do is have blood work done yearly to be sure all my goodies are still behaving. never stop and say, it's fibro and that is all i have to contend with. if you think there is something else happening within you push it with your doctors. this is your body and you know it better than anyone else.
be your own advocate. you need you.
Snoozy, you are so right about the stress. Everything is so hard for me because I have a history of depression and anxiety, since I was a teenager, and so far dealing with this pattern of flare-ups of pain has further stressed me out. I was doing great emotionally, then I developed bad PMDD about 2 years ago, and then last year these inflammation attacks started. I feel horrible physically, which makes me feel more horrible emotionally. Then around the same time each month I will start to feel better, and I am hopeful that maybe whatever is wrong is actually GONE - and all that does is set myself up for more depression when the symptoms come back, because they always do. Then I miss work, get behind, and more stress - and this is just with my minor flare ups, I have no idea how I'm going to make it through this major one.
Very interesting you said about fibro possibly being autoimmune in nature - most of the reading I've come across makes it sound like it isn't, and I have yet to get a doctor to tell me it could be. But I'm sure most of that is due to doctors not being able to see fibro under a microscope, so they don't know what to think of it. And maybe some people's fibro is primarily do to factors that aren't autoimmune - but I feel it's got to be connected to something autoimmune in some people, for it to coexist with so many identified autoimmune diseases.
Bluelakelady, I really appreciate your thoughts and I really admire your positive attitude towards everything - I so wish I was at that point! It's interesting what you said about the trembling, because I DO try to stop it. I always get these odd sensations radiating through my body before the myclonic jerks start, my vision will get blurry, and I try to fight them, because I hate the way they make my body feel so out of control. But you are so right, it only makes it worse.
A few months ago, I started exercising more at home, and it does help me both physically and psychologically. I can do it no problem during the week out of each month when I feel almost normal, and I try to keep something up when I have minor flare-ups at various times thoughout the rest of the month, but I have been absolutely useless during this recent major flare. I mainly do some aerobics and yoga (which I absolutely love) but the past few days I couldn't do any aerobics for more than 5 minutes and my wrists and ankles have been in too much pain to do yoga, which has been depressing, because I love it so much. Even standing with my arms above my head has been a chore.
I was lucky enough to get an appointment with my allergist yesterday, who so far has been the specialist who has taken the most interest in my pain flare ups. Apparently I must have done horribly on the test where I had to blow air out of my lungs, so I got a breathing treatment, did the test again, which improved, but apparently not enough. He sent me for a chest x-ray (which was normal), ordered some bloodwork to check for different muscle enzymes, and wrote me a prescription for Zantac because he thought I might have reflux. I thought that was so strange, until I read up about it, and talked to a co-worker with horrible allergies who developed respiratory issues and she went through this same process of trying out Zantac. My allergist is great, because I can tell he thinks the rheumy I saw is a crock too. So far my rheumy is the only person "not concerned" about my abnormal bloodwork because my regular doc and my allergist seem to be. I'm trying to stay hopeful that he can find something and treat me or at least refer me to a university specialist, because that's my next option.
Do either of you take prednisone? I have taken this once before, when I had a flare-up of pain in my arms last December and my sed rate was elevated, and compared to everything else I take, that was the one thing that helped me more than anything during a flare. I swore I would never go back on it again because of the side effects of a weakened immune system (which was not good for me since it was cold/flu season and I work with young children!) but I feel so bad now, I'm willing to try anything. Especially considering I know I responded well to it in the past. I didn't think to ask the allergist about checking my sed rate again, so I might just call in to my regular doc to see if they can check it, because I'm curious if it's more elevated than it was 2 months ago. She didn't want to put me on prednisone after my inflammation attack in April, because she was worried it could skew the results of some of the bloodwork the rheumy would run. I'm just not sure if I should wait until I find out if my allergist will refer me to a specialist in rheumatology, allergy and immunology at a university medical center. I hate feeling like this, but I also have a sinking suspicion I'm going to have to get much worse before I'm able to get a treatment that will help with these patterns of flares.....thanks for letting me babble.
i refuse to take steroids or methotrexate. those can wait till i am very old, they are needed AND i don't have to concern myself with organ damage. should the need outweigh the possibilities before then, well, i will cross that bridge when i get to it. for now i would rather do the pain, deal with some joint loss and not have to worry about another stroke.
we all must decide for ourselves. only you know.
Hi Minerva, FM symptoms can overlap and simulate other things..making ruleout tests for other things important...there is no conclusive rule-in laboratory test for FM, so it is a process of elimination where tests exists for other diseases/disorders and careful FM evaluation. Problem is so many doctors just don't know enough about FM, not even the specialists who are supposed to. They have not yet wrapped their minds around FM. It is important to read as much as you can....and be your own best advocate with docs. With many you will need to ask for what tests you want done, sad but true....especially with many HMO type docs....it isn't that they don't care....they just don't have sufficient time.