Seeking Help for Shaking & Twitching

[evanslc]

ok need advise please... I just moved to san diego have had bfs 6 and a half years,the last 11 months my life has been hell,constantley shaking ,,twitching,jolts now Im completely fatigued and weak,my doctor hear told me to get off phenobarital ive taken 4 a day for 3 months, my bottle is gone he wont refill it ,could that be making me shake so bad? I am so fustrated this disease is completely consumed me ,im scared no doctor Ive seen yet can help I feel hopeless Im 24 and feel 60 anyone else can relate?
I also have pulsating feelings in limbs.????
Thanks and god bless,
Courtney

 

[TrisTrip]

Moving and getting acquainted with your new surroundings can be very stressful. So can be quitting a drug that your body has become addicted too. I've become pretty dependant on my .5mg of Klonopin in the evenings.

You've lived with this for six years so you must have some idea what sets you off. Do you have increased anxiety lately?

Have you suggested a benzo in low doses to your doctor?

- Jeff

 

[TrisTrip]

Benzo's work as anti-convulsant and anti-anxiety. So it's kind of a double whammy for us BFSers. They work great for me.

Also quinine (a different drug altogether) will stop my calf twitching and is not mood altering. - You may ask for that as well. I take about one quinine a week.

I've also heard that BFS is basically fibro. I think it's more like anxiety/ Fibromyalgia myself.

- Jeff

 

[eyennyGlimmer]

Courtney,

I am sorry you are having so much trouble within the last year.

I do want to say and this is just my belief that I do not think BFS is Fibro. Usaully you have pain when touched on 11 tender points. I know many people with Fibromyalgia and they are nothing like me, yes people can be different but never heard of anyone having BFS from this. They may have Fibromyalgia and BFS but do not believe BFS is Fibro. If you have 11 tender points out of the 18 then it probably is a good possibility that you also have Fibro. Jenn

 

[LisaQ.]

Hi all,
Just weighing in on the Fibromyalgia thing.
I don't have (many)of the requisite tender points and yet was diagnosed with fibro. The issue with Fibromyalgia is that it is difficult enough to get the medical community to acknowledge its existence, (sort of like bfs,) let alone come up with a standardized method of diagnosis. I don't believe I DO have fibro, but there is quite a bit of controversy about what it is and how it is dx'ed. Some adhere strictly to the tender points and disordered sleep criteria, others take a more broad, but in depth approach.

I do believe bfs and Fibromyalgia are different, but probably related, or that one is a sub-variant of another. They are certainly auto-immune, and very often, auto-immune conditions climb on top of one another.

Folks with Fibromyalgia fasciculate. LOL. Folks with bfs also have pain and stiffness and disordered sleep. The symptoms overlap.

But whether you have Fibromyalgia or bfs, the treatment is often the same. Exercise and antidepressant meds, with a bit of xanax thrown in for good measure.

Blessings,
Sue