Year Down the Road: BFS Update

[KnottyPirate93]

So, I'm a year down the road into this. I have done the clean EMG with the BFS dx in January but my symptoms started in October of last year. I still twitch and still have the tight feeling in my throat, but I have started to ache. Mostly in my back and neck but slightly in my elbows, knees, shoulders, hips, etc. And before you ask I have been tested and come back negative for Lupus, RA, Lyme, vitamin and mineral deficiencies, my thyroid, anemia, leukemia, and lastly protein deficiencies. I have tested POSITIVE for two back to back horrible viruses, first Parvo (yes, there is a human form) and secondly West Nile. My question is this: Does the BFS make you hurt? Not cramp, just aches and pains? I am fit, too young for this BS, and not injured. Please someone tell me this isn't my muscles giving it up right before the nasty one finally shows itself. Sick and tired of being sick and tired.Shauna

 

[AllGoodHere]

Yes. I hurt most days but it is from muscle spasms and sometimes cramps - do you have spasms? Random muscle tenseness causes an unbalanced strain on the joints, inflammation ensues, and that in turn causes pain and sometimes injury if I'm not careful. It seems that a fasciculating muscle would also be tighter then normal and pull at its attachment. We are all too young/fit/old/healthy for this as there is no good time or space to have cramps/fascics/pain (circle one or several). I'm taking Amrix (a time-released muscle relaxant) now - it helps. I take some supplements that are known to repair muscle, joint & nerve damage (mostly anti-oxidants benfotiamine, a b1 derivative, b6, MSM+glucosamine). I don't know if the supplements help because my symptoms are so irregular in intensity but they seem to. Some physical therapy helps. Some specific diets seem to help. Some exercise and meditation helps. If you are interested I will go into some of this stuff also or you can PM me. The main thing is that most of us have bad times from this stuff whether it is physical, emotional, or both. I ache most of the time and it is a rare day when I don't if I think about it.....I try not to think about it. I don't even notice the fasics anymore unless they wake me up. I try to get my focus out of my self and into others, work, whatever, and it usually works for me. Except for perhaps on a really bad day. So you are not the only one and it doesn't mean your muscles are "giving it up". I've had this for - ugh - ~ 3 years and I am still strong and appear normal to most people except for the perhaps the trained who can pick out muscular irregularities. You may want to try a rheumatologist to check for arthritis just to be on the safe side. Good luck and don't let it get you down - you can waste a beautiful day like that (and I speak from experience on that one).

 

[KnottyPirate93]

I have actually thought I have fibromyalgia due to the dual viruses that I experienced but I live in a rural area in Idaho and they are still trying to get a grasp on the common cold let alone something as OUT THERE as fibromyalgia. That has twitching and stuff too, right? I also wanted some input on swallowing. Occassionally when I drink a liquid....I can FEEL it go down, like when it gets to the bottom it feels like it has to go over a rock. I don't believe it's anxiety as I'm pretty okay right now, could that be a physiological symptom of what I have?

 

[MarioMasher]

I used to twitch a lot, but these days I tend to be more sore and achy and jelly-legged than anything. The twitches almost seem to be an afterthought for me (as well as for a lot of people). I wouldn't say I necessarily "hurt", but I sure am achy and it sure does move around a lot. One minute my thighs will be burning, one minute my armpits will be sore, and then five minutes later that will all go away and now my stomach will feel like it is cramping up. Oh and then my back might decide to suddenly get achy. It's why I sort of agree with the BFS=fibromyalgia theory.

 

[DonJose]

Shauna, I see you have been tested for many things. But, for the other achey folks, I encourage you to get your thyroid tested and insist on a test for Vit D deficiency. Low Vit D can cause muscle and bone pain as well as weakness and a host of other symptoms. MANY people are low and this is a relatively easy thing to correct.I was low and have been supplementing with Vit D since July. I am 80% better. I was one step away from pain meds and now I feel like I have my life back. I am not perfect, but I am much improved.Linda