Question About BFS Symptoms

[Dimitrios]

Hi Everyone,I've had an undiagnosed neurological syndrome for about 6 years now. After finding this site, I'm wondering if BFS is something I might have. Here are my symptoms:sporadic muscle twitching (at least several episodes per day lasting 3-5 minutes each. Happens all over but most frequently in my back & leg muscles)infrequent but severe muscle cramping in my calves (always while sleeping)intermittent full-body neuropathic pain (burning, stabbing, stinging, acid-under-the skin type pain)tingling on my scalpraw, tender pain spots (similar to a bad toothache) at various places along my spine mild anxietyhyperreflexesnoise sensitivitysensation of water in my earcold sensitivityThese symptoms all started suddenly in 2001 following a flu-like virus. Things got worse for about 2 years and then slowly I started getting better. By around 2004 I was almost back to normal again. Then in 2005 I had a medical procedure that involved a needle being inserted into my spine. After that, all my symptoms flared up again. After several months things slowly started to improve once again. But then last month I got hit with another bad flu and now the symptoms are back in full force. The pain symptoms are the worst for me to deal with. I take Neurontin & Tramadol which do help but sometimes the pain breaks through anyway. I've been to numerious specialists and have had all kinds of blood tests, cat scans and MRIs. Everything came back normal. At one point a few years ago I received a diagnosis of fibromyalgia even though I don't have any of the 18 tender points that are officially used to determine the condition. Also, I don't seem to have a lot of muscular pain which is the chief symptom with fibromyalgia. That's why I've always been skeptical of the Fibromyalgia diagnosis. My muscles twitch but they don't hurt much except for the calf cramping. Most of the pain I get is nerve pain. Is it possible I have BFS? I've heard of BFS before but before I found this site I didn't realize that pain can be a symptom of BFS. Does anyone out there with BFS have other symptoms similar to mine? I appreciate any thoughts or feedback anyone has.

 

[DrewPanncys]

Steve: yes, much of what you describe is common to many here. When I first started with my own batch of symptoms, pain was the presenting issue. The twitches came along later. I also had stiffness in my hands and was extremely sensitive to cold. The symptoms picture for most of us seems to change over time but the defining issues are the twitches, cramp-like pain and oddball sensations many have experienced with this syndrome. If you do not have trigger points, I'm not sure why you got the Fibromyalgia diagnosis but the diagnosing physician should be able to answer that for you. Like you, many here have noted return or worsening of symptoms with illness and stressful events (physical and nonphysical). The good news is that most twitching is benign in nature. Annoying but benign. I personally find the occasional painful sensations more distracting and distressing than the twitches. I guess the main point is that while apparently chronic, this syndrome is benign and not known to be progressive but more "relapsing and remitting" in nature. You are learning what triggers your symptoms and I guess over time, you'll build a repetoire of tools you can use to manage those symptoms and take good care of yourself at times of "risk" for relapse. This site is a rich resource for various ways to do this. Not everyone responds the same but you can follow up on those strategies that interest you or sound reasonable and see what helps. Welcome aboard.

 

[Dimitrios]

Thank you for your response Nancy. I'm relieved to hear you say that my symptoms are not uncommon. Just being able to put a name on my condition helps alot. It's been so hard not to start doubting myself when I have all this pain but the tests keep saying that I'm fine. I realize that this is a benign condition and there are lots of people out there with much more awful diseases. It's just hard keeping up with the demands of life when the pain and discomfort never goes away. Thanks for your welcome and encouragment.Steve