Hello All,

Thank you all for sharing your experiences. I'm sorry you / we are struggling with this disease. I'm in my 50s now and was diagnosed with BFS / CFS in March of 2020. I've seen several neurologists and had a couple of EMGs to rule out other conditions. I've given gallons of blood but all my labs have come back "normal." Like many of you, I have not been able to identify the "cause" of the cramps and fasciculations. I did have a virus prior to onset of symptoms which caused dizziness and vertigo. I also was doing a bunch of aggressive physical therapy to rehab a knee injury. I also had job and life changes ... so who knows ... ?

My symptoms are similar to many of yours. Fasciculations are persistent in my calf and and lower leg muscles. I also have constant cramping in my calf muscles. I will sometimes get night sweats. On rare occasions the cramps are really bad and will wake me up in the middle of the night. There are days when my quadriceps and hamstrings will feel "rubbery", kind of like I just ran a sprint... when in reality I'm doing something simple like washing the dishes. I also have burning in my feet, but only when it is quite warm. I will at times get tingling / pins and needles in my mid-back. Mostly it feels like someone / something is trying to "peel" my calf muscles off of my bones. ALL these symptoms will "subside" to some degree when I exercise or am fully engaged in an activity or a film or a book... but if I'm idle they can be very noticeable. All seem to be worse in the morning and subside a little during the day.

In order to help alleviate the symptoms I have tried prescription medications and supplements. My experience with them is as follows --

Prescriptions --
*Gabapentin -- Did nothing to stop the cramps or fasciculations. Caused really bad swelling in my feet. Stopped taking it
*Tegritol -- Developed a DVT in my leg and got Peyronie's Disease within 3 weeks of being on this medication. Subsequently I was diagnosed with APS (Anti-Phospholipid Syndrome). Whether these issues were caused by the Tegritol or just a coincidence I will never know. But I stopped taking this one.

Supplements --
*Magnesium Glycenate (LOTS of it -- 1 teaspoon 2x/day... gives me diarrhea...)
*Vitamin B-12
*L-Arginine
*L-Carnitine
*Potassium
*Vitamin E

Other --
*1:1 CBD:THC edibles. I take one after dinner -- my new dessert. I believe it helps me sleep through the night. I also feel that it alters my perception of the pain and makes it less intense and focused and more diffuse.
*Tylenol -- I take 2 extra strength Tylenol at night before bed
*Diet -- I've tried the KETO diet but lost a bit too much weight. Now I'm just focused on eliminating sugar and bread. I also cut out caffeine.
*Exercise -- I've been an athlete my entire life. I played college basketball. I bike raced after college. I've always been active. I continue to ride my bike, swim and lift weights. I will stretch 2 days per week and also use a foam roller and a theragun. I understand that "exercise intolerance" is one of the issues that comes with BFS / CFS. It is certainly more difficult and painful for me to bike and swim now -- however what is odd is that my swim and bike times are the same as before the CFS ... so while its more painful my "performance" / "power" has not changed. I believe despite the pain the exercise does more good than harm and it certainly helps with my mental state and gives me the sense (Illusion?) of having some control over my body. Plus ... endorphins!
*Acupuncture -- 1x / week. I'm hoping it will "calm" my nervous system. Just started this a couple weeks ago...
*Physical Therapy -- I just started going 2x per week to a PT who specializes in neurological and pain issues. We are working on "neuroplasticity" along with strength and flexibility.
*Mental health -- I talk to someone about anxiety / depression. This disease can get me down particularly when I start to think it may "never go away"

I hope my experience helps someone here. I will say that it has been a struggle, but over time I feel I have improved a little. My symptoms 18 months ago were quite bad and I had given up on a lot of my activities and hobbies. Now I just try and "go about my business", take care of myself the best I can and ignore the symptoms as best I can. Please feel free to ask me any questions ... also, if anyone has any recommendations for me I am grateful for your time and input

Be well.