ready to surrender to fibromyalgia
AnonymousDecember 2, 2009 at 9:20 pm
I went to another rheumatologist today about the other illness. I had a chaffed rash all over my face. I told him that I had pleurisy last week and that my shoulders have been very weak and painful. He asked if I had done any research on fibromyalgia. I asked him if pleurisy and skin rashes happen in fibro and he didnt answer. He asked me if they saw the actual inflamation in the chest xray. I said no. I guess sometimes muscles over the chest can hurt like pleurisy. I asked him about dermatomyositis and he said we will test for that but at the end he said we arent going to do any tests because you are going to southern calif. next week and they will do those tests.
I will surrender to fibromyalgia on one condition and that is that I do another comprehensive ANA panel this time not right after PE and not on steroids like the last one and that I have a negative creatine kinase and adolase for myositis.
I am so suspicious of Fibro because I have had soooo many tests to no avail and your going to tell me that after all that and with all the symptoms and partially possitive tests that your going to poke me in 18 different places and diagnose me just like that. Diagnosis is such a difficult process I cant help but think that the syptoms listed under fibro werent absorbed by the many undiagnosed legitimately neurological and rheumatological patients that were unduely place into the fibro catergory for lack of other placment. I get suspicious that the Insurance companies push that diagnosis because its cheaper than others. I get the impresion that doctors are really pushing that diagnosis and i dont know why.
But really who am I to argue. this is just my impression probably not the reality. this is alot of peoples impression so I cetainly dont want a disease that is so debilitaing and yet is considered a step above hysteria. I am not saying that i dont believe fibro patients arent suffering for one second I am just voicing my impression and that maybe I need to get over it and surrender. I am refering to the second illness of coarse. only after every test has been exhausted
As far as the cidp. dr sahagian cancelled on me today so who knows when that part will end but I am asymptomatic for neurology so yey for that.
December 3, 2009 at 5:03 am
I hope you rescheduled with Dr. Sahagian. Prayers and Best Wishes!
AnonymousDecember 3, 2009 at 3:34 pm
I’ve read most of your posts since I’ve joined this board; don’t know if we’ve talked much before, but I wanted to share my opinion. None of this is “mean-spirited” and is meant in supportive terms, so please don’t read it any other way. You seem to be the type who prefers straight talk, rather than BS, so I’m gonna talk to you “straight”.
I understand your frustration; at least as much as I can. I’ve encountered a lot of it myself.
I was diagnosed with Depression back in the 90’s. I called “BS” on that and told my wife the guy was a quack. But, after several months, and several other non-partnered docs all suggesting the same thing, I made a decision. I decided that perhaps I was too “emotionally” involved; that my perspective may not have been correct. I figured that there had to be SOME reason that everyone but me thought the same thing. So, I sat down and considered what the drawbacks would be to giving in and trying their suggestions. Would it make things worse? What would I be out if I tried it? Was there any risk involved in considering their dianoses? While I still didn’t agree, I decided that I had to at least acknowledge and try the suggested treatments, if for no reason that to prove to them and myself that I was right. That also required allowing for the possibility that I was wrong. Turned out we were both a little right and a little wrong. The AD’s (anti-depressants) worked to a degree, but there were some things they didn’t help with. I think, from reading your posts, that you need to consider that you’re too “biased”, and consider listening to a few TRUSTED people who are suggesting alternative. You need to allow that you might be wrong.
I don’t think there’s anything wrong with your idea of a compromise, either. I’ve done that with my GP…I’ll try your treatment, if you try my lab test. Kind of a tit-for-tat approach. If you have a decent doctor, and they test doesn’t cost a billion dollars, why wouldn’t they approve?
Are you receiving any type of therapy/counseling? I hope the monitor didn’t just click off, or the door just slam. I’m not calling you crazy or anything like that, but consider this: PhD’s are paid to listen…MD’s are paid to diagnose. Over-simplified, but does that make sense? While I’m new to CIDP, I’m not new to chronic illness, as I’ve fought one for over 8 years now. Anyone with a chronic illness will, in my opinion, need the help of a therapist from time to time. It’s frustrating, maddening, you’re up one day, and down the next. Just when you think you’ve made a step forward you take two steps back. We need someone to talk to, who is emotionally distant enough to give us some honest feedback. Your posts drip of frustration over not being listened to; I’m just trying to offer an option that will help with that frustration. Not making any judgements or anything like that. Hell, I’ve got so many issues I’d be a counselors dream patient. He/She could retire off of me!:D
I also get the impression that you’re looking for a “one size fits all” diagnosis. From everything you’ve posted, I’d have to suggest that it’s entirely possible that you DO have Fybromyalgia AND one or two or three other things. Just having FM doesn’t mean that you don’t also have CIDP, PN, or whatever.
You mentioned your suspicions about an FM diagnosis. You DO know that it’s a diagnosis of “exclusion”, right? In other words, based on your symptoms, they check for all the other things it “could” be, and if none of those are positive, they decide it’s FM, based on the “exclusion” of other findings. MS is actually a diagnosis of exclusion, as well, as are many, many “syndromes”. My other chronic illness is one of those, so I had to learn about it 8 years ago. While it seems like a handy little bag that some doctors throw all their “unused parts” into, it’s actually very common, and a justifiable medical approach.
Hope you understand that this is all said with care and compassion. You may decide I’m nuts; that’s okay…that’s not a very exclusive group. But I’m trying to be honest, which is why we all come to these boards, isn’t it?
Best of luck,
AnonymousDecember 3, 2009 at 8:27 pm
To get yourself OFF the ‘mental list?’ Go to, but pick your counselor carefully! My docs often ask me if I am ‘depressed’. All I can do is respond w/a ‘DUH?’ WHO WOULDN’T be DEPRESSED going through all these tests, knowing something IS WRONG, getting the occasional brush off, and am yet still getting worse? Wouldn’t YOU! I throw it back into their court, altho, very quietly and factually. As angry as you might be, or frustrated? You ARE following your instincts. You just have to find THE doc who will follow along a constructive path for you! That part is not easy by far.
You almost have to be like ‘Santa’? In creating YOUR list, and checking it twice and being totally consistent in how you report prior and ‘new’ issues.
I was injured this summer? And I truly wish I’d had a personal recorder! So I could simply replay the questions by new docs and just press PLAY! About the 15th time giving your history gets very OLD!
When I first was diagnosed? I was ecstatic! Especially as the very first neuro I’d gotten considered me a ‘drug seeker’! DUH? I hate being on drugs! I guess it was the result of a random comment about one pain killer that had really worked in the past? While my meds list is LONG, very long. Very little of it relates to pain relief. Why? I’ve found that my pain is my gauge as to what all is going on with me! Lidoderm patches and small doses of ultracet are my quota. The brain fog of the ‘pain modifers’ masked my real issues other than the CIDP. THAT can be a scarier thing! Those meds plus the others I was on for other medical issues simply were making things worse. Plain and simple. So, ultimately be as cautiously honest as you can be? Be consistent, bring results of any tests you’ve had before for ALL the different issues and MAYBE, just MAYBE you have a doc who mite be able to connect dots? Keep faith that YOU KNOW you have a problem or problems. You know YOU best?
THE HARDEST thing is to not come across hysterical? Simply quietly scared stupid. That’s how I played it and that is how I was!
I hope this helps you for the long run? I also appreciate that ‘silence’ you get when a doc reads your ‘medical history’! It is dead silence. Along w/a couple of uh-huh’s? When they do it in front of you? Do keep your sense of humor? Because you know you are going to be a ‘challenge’ – and or a ‘hot potato’! Since I fall into both of those categories? I gotta smile when I see those eyebrows furrow! Keep a sense of humor? Docs always like that in a patient? And be stronger than you think about it all. It’s not that hard in the long run, trust me. Hope and faith in yourself!
AnonymousDecember 3, 2009 at 10:08 pm
thanks for your replys. I dont take offense because i agree. because I have actually been diagnosed with GBS and I know the rest feels the same I will never yield short of diagnosis to CIDP but the whole reason why I posted this was to say I need to get over my preconcieved notions of fibro.
My primary care is so awsome he listens to my shpeel about conceeding to fibro on the condition that I have another ANA panel and a CPK and he absolutely agreed, He said of corse we need to rule that out, you cant be siting there being treated with Fibro while your kidneys are being ravaged by Lupus. I joked about the statistical improbability of having myositis and CIDP in the same body. decending and ascending weakness. my doctor laughed and said that it would hit in the middle, your poor bladder wouldnt know what hit it. Then he said that my symptoms were consistant with lupus so yes lets run another panel. He told me he would rather have lupus than fibro. I disagreed. maybe he is too indulgent of my rants.
anyway I am ready to surrender so I can move on.
AnonymousDecember 4, 2009 at 1:18 am
I was diagnosed wrongly with Fibro for years and once the new doctors saw that they didn’t investigate further. I did ask them why I was diagnosed with Fibro and some said for insurance payment reasons as they really weren’t sure what I had. Of course for years they hadn’t told ME that.
Keep on looking/trying. I take an advocate with me to any new docs-the second pair of ears does help. Some docs are just plain weird/mean/biased/got a problem/afraid to admit they haven’t a clue to what you may have.
I play the quiet respectful female and try hard not to get emotional cause then it’s suddenly “She’s got emotional issues”. A friend just called me and her new neuro walked out of the room when she broke down sobbing. I finally said she had to learn not to do that and keep all her info to the basic minimum.
We now know so much more due to the internet/media.We question doctors diagnoses/decisions.They don’t care for that much.
Good luck. The road to being diagnosed with a rare or multiple illness(es) can be daunting.
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