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Confused and scared...
2 Replies
EmmaVee - August 4

I've been pretty convinced that I have fibromyalgia for the last several months or so - and just recently went to a rheumatologist (hoping for quick answers, no luck) who had me get a blood test that came back telling me that my white blood cell count is "slightly low" and I've tested "slightly positive" for a connective tissue disease in the lupus-like family. I have NO idea what to think - and I have to wait another couple weeks for the next set of blood test results...the doctor was very calm and sort of rebuffed the idea of it all but the word "lupus" threw me off completely and I have been searching for some place to ask other people with similar scenarios...have you all gone through the blood tests, etc. to arrive with your diagnosis? Have any of you had similar blood test results?

I am so scared that I'll go back and the doctor will a) find nothing and just send me home or b) find something I'm not expecting at all.

I've already been diagnosed with Interstitial Cystitis (anyone else?), I have ibs, terrible heartburn issues, the list goes on...I just don't know what to do! I appreciate any help...

 

bamabornwriter - November 26

Emma, patients with Fibromyalgia frequently have Interstitial Cystitis and/or IBS. I am a retired medical technologist and wonder what the rheumatologist meant by slightly low white count. Normal count ranges from about 5000 to 10000. I would not worry about lupus unless they do more specific tests and find them positive and you show more symptoms common to lupus (butterfly redness on face etc). I have a severe case of fibromyalgia and believe I had it for years before getting a diagnosis (after a long period of serious stresses the symptoms became very pronounced and the interstitial cystitis appeared and I finally got my primary physician to really investigate fibro seriously). She did testing for lupus and RA and other things and ruled them out and finally did some research on fibro and realized I was right. My mom had had it too before many doctors believed it existed.

Read all you can find on fibro from places like Mayo Clinic etc and find the checklist and go down it yourself. I have nearly all the symptoms with pain in all the "points" severe enough that the doctor has actually injected both my shoulders with cortisone (and it does help at first but don't know if that is due to the cortisone or the xylocaine that is added). I have sleep disturbances and depression both which cause a spiral effect to make the pain worse and that makes the depression, etc worse. Just knowing that you are not crazy or imagining things or being a hypochondriac makes dealing with it less stressful. Find a doctor who believes in your ability to know yourself and your body. I found Cymbalta to be effective to lessen the pain and depression but it caused diarrhea (took awhile to figure that out and stop the med) and also Savella worked fairly well but caused a rapid heart rate and associated symptoms so had to come off of it. Lyrica just made me feel like I was in "la la land" and not be able to focus, etc so I didn't take it but a few days.

I get very frustrated since very few of the the doctors I have encountered really believe in fibromyalgia as a diagnosis-I suspect it is because not many of them have ever had it or had a loved one with it. It is essentially a neurological problem. Many years ago I had a rare syndrome affecting my arms and had nerve stimulation tests done (both with needles and electrical stim.) and it was determined that pain was both magnified and transmitted faster than normal; that makes sense after all these years. It was not helpful in diagnosing my problem back then except to explain why the pain caused by scar tissue compressing the nerve/artery/muscle bundle in my shoulder was so intense.

Try to distress as much as possible, do what you can to relax your muscles, find a doctor who will work with you, believe in yourself and pray. Best wishes.

 

EmmaVee - November 30

Hi bamabornwriter - I really appreciate you taking the time to answer me. My rheumatologist ended up doing the ANA test for Lupus and it came up negative, so he brushed everything off (yet again). I still don't know what the connective tissue thing would mean, why I tested positive, etc., but I guess it was just a false positive. I just wish he would have explained things more. He tested SO much and just spewed out the results, without explanation, and if there was explanation, it was all medical jargon.

He did diagnose me with Fibromyaglia. I've been taking Cymbalta...haven't noticed much of a difference.

It's so strange to read about the symptoms of Fibro - because I have nearly every one...even down to sound sensitivity and things like that. It can be a relief to know what's going on in my body, but living with it is very, very difficult. I know you understand that!

It is a very frustrating thing to deal with - along with IC and other things that people can't "see" so therefore don't necessarily "believe." I have read that people with Fibro have overly sensitive neurological responses to everything...that our brains just can't help it. Sucks.

Thanks for your kind words. Best wishes and Happy holidays to you!!

 

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