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Regular Member

Date Joined Jun 2005
Total Posts : 489
   Posted 5/23/2010 10:05 AM (GMT -7)   
Hi everyone- :-)
Since getting over a bad case of the flu--last Nov (don't know...if i've written TOO much on this...but i'm gonna post on  here in detail)---I came down with this crazy,.& scary set of neuro symptoms--myoclonus...of my muscles...fasciculations...cramping...starting on my back...then spreading ALL over--(arms..legs...back...neck)--I'm talking about ...major...scray neuro symptoms!  smhair I thought i had ALS...or MS...or something!  But---thank God...(and i DID pray)--I do not!
Got to see 2 really great neuros here in Philly....after I switched Drs...AND hospitals---!  They gave me a complete ' neuro workup'...(2 MRIs...brain-cervical spine)...2 emgs...eegs...and blood tests...(for thyroid...& other stuff)--plus..numerous regular neuro exams!  everything..."normal".. yeah (except for---what neuro said is expected someone my age...late 50s....lumbar radiculopathy)---
Anyway--both neuros....(one a nationally known specialist on epilepsy...the other...movement disorder)--BOTH told me....what i had was   "BFCS"--Benign Fasciculation Cramping Syndrome"-
Don't know what causes it---but often people who have flu etc...often come down w it!  They told would eventually resolve...(could not give me a time frame)--I COULDA 'lexapro'...& Skelaxin...I chose not to--!  I'm already on other stuff...(valium...among others)--They said....many neuros feel it is "auto immune related...& it 'overlaps with Fibro...AND CFS-!
Anyway---last accepted to be seen at the prestigious Mayo Rochester Minn---(July 6...the neuro division)---they told me to "expect to spend...5-7 working days there-!  See if they come up...with some more detailed answers!  ( least it's Minnesota...& not January! smilewinkgrin   
Me & wife made hotel reservations...& hotel has a shuttle which will pick us up at Minn/St. Paul airport...& drive us to...& from Rochester...for $55...r/t--!
OK---now *to my point* re: Fibro ---last few weeks...have gotten very sore ribcage!  Feels like I just did a workout!  Only hurts...when I move!  During the may go away..or 'migrate' my lower back-(why does this happen?)--! sleep is very disrupted! 
What does help are 2 aspirin...& a hot shower---! (I don't like to take anything real strong!)
To me, (and to my cousin--she is an RN.....& HAS...'fibro')--she feels that is what I have, Fibro!    I've also noticed feeling very mind seems.."foggy"...& I forget things!   Again....all my studies..(including blood)--a  re Drs---say..."unremarkable"-!
**Does this sound like Fibro to you?  (esp with the high correlation of fibro...with  BFCS--?)
My question(s)...I see my neuro this week---(tues...)--& I'm gonna tell him about it! Should I ask him...for a stronger pain reliever?  Or...just wait till I'm "Mayo Clinic Team"?
Like i said...aspirin does work...(or Advil...Motrin)-BUT...i will NEVER take any  kind of 'anti-depressant'-! I have 'mitral valve prolapse'...&   get supraventicular tachycardias...from time to  time!!  But...with any kinda SSRI....I get them..BAD!(Drs...AND my cardio say this does happen!) 
ONLY med i've taken in the past....for something...was Neurontin...(Gabetin)---!   It does not bother any way!   Can THAT w fibro pain?  (get back on this...w your thoughts on this..& med suggestions!)--- confused   
Anyway---Thanks...for reading---regards--Robert  smilewinkgrin

Veteran Member

Date Joined Jul 2009
Total Posts : 4796
   Posted 5/23/2010 12:20 PM (GMT -7)   
Hi Wotan! You are really lucky to have the chance to be seen by the Mayo specialists. They
should be able to give you some answers and get things sorted out.

There are members here who do take Neurontin for firbro. I'm one who doesn't. I take
Savella, a SNRI that helps keep up the levels of serotonin and norepinephrine in the brain.
Cyclobenzaprine I use for flares and that is a muscle relaxer. Some members use it as a
sleep aid. Do let your doctor know that you need something for the pain relief. Heat does
help, so continue with the hot showers or soak in a tub. Most of us use bedbuddies too.

Most fibromites do suffer from fatigue and I take B-12 5000 mcgs to help with that along
with 2000 IU Vitamin D that helps with the achiness.

Fog is real common with fibro. You do have some symptoms of fibro , but there are so
many other things that also have simular symptoms. Wishing you the best of luck when
you go to Mayo. Keep us posted.

Hugs, Robin
Fibromyalgia, MCTD (Lupus, Scleroderma & RA) Raynaud's, Osteoporosis,
Osteoarthritis, Degenerative Disc Disease, Migraines, and Hypertension
Prescription Meds: Savella, Cyclobenzaprine, Methotrexate, Diltiazem, Boniva,
Folic Acid.  OTC Meds: Multi-vitamin. Vit, D, Vitamin B12 & calciim supplements

Regular Member

Date Joined May 2010
Total Posts : 110
   Posted 5/23/2010 4:42 PM (GMT -7)   
Hey.. sorry your having so many problems right now and it really sucks to be in Limbo Land and hopefully Mayo can get you some answers Lickety Split!

I can't tell you if that is Fibro and I don't really think anyone can until you've gone through the triggers and questions? My main problem was the pain down my neck, into my left shoulder, down my left arm, and into my left breast. I've been diagnosed with Fibro but they are still looking for other problems.

Anyway I know with your MVP you will not be able to take Savella or most medications for Fibro. I know on another forum there are many jumping on the LDN wagon. Low Dose Naltrexone (LDN) and it is working very well. You can not take pain meds while on this which looks to be just hunky dorey for you :) Not to say this is a miracle med even if it is an older med and was not used to it's potential as they are now. But it seems you would be a good candidate to try this. Maybe ask while your at Mayo?

Skelaxin did not make me groggy or dopey. I think some take Flexiral (sp) or something like that but I've taken Skelaxin. It helps with the muscles. I have trouble with Opiates too so I take Etodolac which is in the same category as Alieve.

Let us know what they say ok? Hope you feel better soon. :)
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