Hello Everyone, I am a new member here, just joined this mornin'! I used to be a member of a couple different fibro support groups 5 yrs ago, when i was 1st diagnosed and started meds for Fibro. I haven"t been on one 4 yrs now, cuz i thought I knew Fibro pretty dang Well, & that I really knew "my" fibro very Well.....it had pretty much been the same for the past 5 yrs! When I was 1st diagnosed I had 16 of the diagnostic points of the 18 of fibro then. The 1st time i got trigger pt injections, I was in such a flare & in So much Pain....pain doc gave me 14 trigger pt injections 1st time!.......But in the past 4 months i have had Alot of new symptoms, which I have never had in the past 5 yrs! I basically just had the intense all over pain from head 2 toe muscles n every joint possiible ,...intense muscle spasm, extreme Flares ( those are all the Norm 4 Me, but have increased Alot with new symptoms i had never experienced.....started having extreme Fibro Fog-cognitive dysfunction...the use of Random totally out of nowhere, in the middle of a sentence,....words that have nothing to do with Anything I am thinkin' or speaking about
....the strangest words fly out of my mouth...in place of what I am intending to say!....Word recall dysfunction! I have actually even had a for a min or 2,...not knowing where I am at....or any idea of how to get where I was goin'! It was 2 a friends house, had just been there less than a wk earlier....VERY SCARY!! And Now also I have what my my Rheumy says is very DRAMATIC Myclonus, happens during the day, but nothing like every time I lay down.....no matter what time of day...not fallin' asleep......within 45 sec- a min 15 sec, My body will start to have myclonic jerks....once it starts...my entire body is taken over, they are So DRASTIC that I look like I am havin' a Seizure....jerking my body parts uncontrollably from head to toe......completely off the bed n as I said looks like a seizure, but I do not lose any kind of conciseness or brain activity....I am completely alert
n' know everything happening! when I saw my rheumatologist 3-4 months ago, i took in 2 pages of notes (front n back) of all this new stuff n' a video of what happens when i lye down!! I really like my Rheumy, he is a great guy and so easy to talk to......he told me at that time, he believed everything in my notes & that I explained....was extreme "Progression" of my fibro! He was 99% sure, but wanted me to see a Neurologist, due 2 the video (myclonus JERKING of entire body) was SO DRAMATIC, he wanted 2 make sure I did not have an underlyning Nerou movement disorder or disease, n' that if i saw her & nothing was found....next visit he would tell Me he is 100% sure it is All my FIBRO!!....n that he believed i have had it for more like 9 yrs than 5yrs,...without being diagnosed, 4 yrs! Well I have went n seen the neruo n was clean for all neuro diseases n' no movement disorder.......So I see my Rheumy again the 23rd of this month,....and I do BELIEVE HE IS 100% right now!.....I WOULD LIKE 2 KNOW IF ANY OF U HAVE THE INTENSE BRAIN FOG,COGNITIVE DYSFUNCTION....i EXPLAINED....OR BIGGEST ? IS THE MYCLONUS WITH UR FIBRO?? PLEASE, IF SO WRITE ME....i WOULD REALLY LUV 2 HEAR FROM SOMEONE ELSE GOIN' THRU THESE, IT IS ALL SO KNEW TO ME! IF I CAN FIND OTHERS GOIN' THRU SAME, THEN IT WILL GIVE mE CONFIDENCE THAT MY RHEUMATOLOGIST IS CORRECT!! WOULD APPRECIATE ANY RESPONSES AT ALL! HUGS N PRAYERS 2 ALL THAT SUFFER THE LIFE CHANGING PAIN N EFFECTS OF FIBRO......FAIRLADY1 https://www.healingwell.com/community/emoticons/turn.gif