Not sure it's Fibromyalgia

[izzyhuss57]

I was diagnosed with Fibromyalgia 2 years ago.  I am seeing a specialist who focuses only on Fibro.  Nothing he is doing is working and my symptoms are changing and getting worse.

I have bilateral foot nerve pain and tingling that sometime radiates up my legs. I have bilateral hand numbness and tingling, sometimes so bad that I can not use my hands.  I have had some weird symptoms that dont make sense, for instance; woke up in the middle of night felt severe pain in my coccyx area (pressure pain).  Went to the bathroom and almost passed out, broke into a cold sweat and was seeing black in and out.  Laid down on the floor till it passed about 5 minutes.  Next day was fine although very weak.

I have all the symptoms of Fibro  and Chronic Fatigue.  It put me to bed full time for the first 9 months.  Now I have a good day here and there.  But I am getting new symptoms all the time.

I have gone to every type of doctor, including Mayo Clinic in AZ.  No one is able to look beyond Fibro.  They keep sending me to a Psych.  I am not crazy.  

Question
Where can someone go who is having problems and is not getting anyone to look deep into it until we find the
answer?  

Thank you

[melanie31]

i was told i have fibro in 2005, but have not been given anything for it to this day. i was curious about lyrica, but i certainly don't want to gain 10 lbs in 2 weeks. call me vain. ;) sometimes i get so mad i cry. it's like there is literally no help for those of us with fibro.

[izzyhuss57]

Hi

Thanks for emailing me.  It is interesting to me about your numbness and tingling.  I cant believe this is just nothing.  I have been to every type of doctor there is, except endocrinologist.  Thats is my next stop.  Currently I am going to a neurologist who looks at me like I have 10 eyes!  He did an EMG which came back normal and now they are doing a skin biopsy.  Waiting to hear from then about that.  I feel so crazy but I know I am not.  Someone has to help us.

I am going to a Fibro specialist who is wonderful, but even he thinks I have something else.  Too many nerve issues. I have low wbc count and high ANA test and that is always consistent.  Everybody just looks past it, even when I bring it to their attention.  I dont get it!

I am on Cymbalta and it helps I guess.  But consistently I am up and down like a roller coaster.  9 days in bed maybe 2 weeks up or less and on and on it goes.  My first 9 months was horrible and I was in bed for a full 9 months!  Now as I said I am up and down.  Unable to hold a job because of it.

I wont take Lyrica, I took it for 2 weeks and gained 10 lbs.  Sorry I am not doing that.
Well take care and God bless.

[katika29]

I also have been diagnosed with Fibro and Chronic Fatigue, and have suffered for at least 15 years.  When Drs. don't know what you have they say it's Fibro.  I have same tingling in legs and arms as you do, extreme fatigue, sometimes it gets better. I know what you mean when you say they want to send you to a Psych.  We KNOW it's not in our heads.  We feel the pain, and fatigue, so they say maybe we are too stressed and need to relax and prescribe anti-depressants. I have had my cardiologist even say he doesn't believe in Fibromyalgia altogether.  I have recently seen a Neurologist for the pins and needles, tingling pain, have had MRI, blood work, etc. to test for MS, Lupus, came back normal, however, Rheumatoid Arthritis tests came back positive, so now they believe me, that something is wrong.  Then my Neurologist sent me to Rhematologist, who said my tests show a low level RA, so he didn't give me anything and told me to come back in a month. Great help that was, finally something shows up and the Dr. poohs-poohs it because it is not severe RA. The pain is severe to me.  My neurologist gave me Neurontin 100mg 1-2 times a day, that seems to help a little. I will be going back to him to ask for Cymbalta, I read that it is for Fibromyalgia and is also an anti-depressant, so no need to take two different things.  Lyrica is also for Fibro but is not an anti-depressant and I heard it makes you gain weight. The Neurologist was the most helpful with addressing my pain and believing that it is not in my head. What have you been prescribed for the pain and has it helped at all, and what type of Doctors have you seen?