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My family doesn't believe my FM diagnosis
2 Replies
Summer - July 7

Hi,

I've been to countless dr's and had countless tests. I eventually went to a neurologist b/c the deep, burning pain in my arms and legs was intolerable all of the time. My skin hurts to the touch. My eyes are extremely sensitive to light. When people are talking in normal voices it makes my ears hurt horribly. I have muscle twitches and spasms. Frequency of urination and burning in my bladder area (no UTI). I have hypothyroidism and PCOS. I also have a hard time swallowing. Other symptoms include, memory problems/slow thinking, headaches, dibilitating fatigue, menstrual irregularities. I also have 12 of the 18 points that constantly hurt.

The neurologist did and MRI w/ contrast, EEG, CT, EMG etc. All were normal, except on the EEG they saw a weird brain wave called Rhythmic mid-temporal discharge. The neurologist said that people w/ FM sometimes have this unique brainwave. He also said that since all of my tests came back normal, then I have FM. I also was tested for rheumatic diseases and Lupus..all came back normal.

I told my husband and other family members what the neurologist said and they said that I don't have that and that dr's just give someone a diagnosis of FM when they don't know what's wrong w/ them. My mother in law said is a hairdresser and she was going on how she can't count the number of women she sees who have a diagnosis of FM.

I don't doubt that it's possible for people to receive this diagnosis when they don't have it. But in my case, I have ALL of the symptoms. Not only that, but I read that neurologists are the best dr's to make this type of diagnosis.

I'm just sick of being in constant pain and now since I don't have the support of my family, I feel more alone than ever. I know that they believe that I'm in pain but they just don't believe the diagnosis. I guess I just need some validation on my condition.

 

Anne R. - June 29

Consider yourself validated! I know it's hard when you don't have support. I didn't want to believe I had FM myself, until I spoke with another person who had the symptoms. Encourage your husband and mother in law to research the syndrome with you. I forced my husband to read the websites and the information my doctor provided for me. Now that you've been diagnosed (and FM is a syndrome of "ruling out" other diseases), you can get on meds and find what works for you. It may take some time for you to figure that out, but it will happen. Maybe you can find a support group in your area? I have not, but I feel so much better knowing that this forum is available for venting, and for gathering info. Take heart (and maybe take you hubby to the doctor with you!). Good luck!

 

Summer - July 7

Thanks so much for your support and encouragement. I did have my husband read through the symptoms and research and now he believes the dr's diagnosis. I think that there was a bit of "denial" on his part. He just feels helpless (as do I) so he was coping by denying it. We're doing much better now. Dr' put me on Cymbalta. I'll see how that works. I also go to a chiropractor which is helping tremendously. My biggest problem is sleeping...my legs hurt so bad and nothing helps.

 

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