11 Months of Health Struggles

GrizzlyLeader

Well-known member
Without giving the lllooonnnnggg drawn out version of what has been going on with me for the past 11 months, I will give it to you in a nutshell: it is basically like this~ I was a healthy, exercising, 37 year old and the bottom dropped out last May. tarted with a couple of times wetting the bed (had MRI of everything from head down to rule out tumor), a blood vessel popped in my right calf then the weird (I described it like things were crawling on my calves) twiching started but it was in both calves. Had heart tests, blood clots, etc. Stomach would then make me very ill everytime I exercised. Lost 7- 10 lbs in two different episodes of that. Endoscopy and colonoscopy. Have GERD. Twitching moved to entire body with humming and electrical feelings..Everywhere. Tested for Mercury, Lead, B levels, every vitamn def. possible, HIV, Lymes, all clean. Started Lyrica, told I probably had BFS. Stopped Lyrica (w/o DR knowing after two weeks of taking) and had horrible burning in palm of R hand, felt shaky in fingers, felt like rubberband around my wrist, strange feeling in upper arm. HUGE twitch started in R thigh that went on for a week or so. Left that thigh feeling empty and shaky. EMG done. Clean. Neuro felt "something was going on, but not sure what." Didn't think it was the yucky disease. That was as of last Sept. I stopped working out five days a week and slowly began again but didn't do arm workouts as R arm was very sore and twitchy. Hurt to use mousepad on computer, drive, sleep on R side. I still only workout one to three days a week and still can't do certain things without causing soreness and feeling weak on R side. Like step aerobics makes that quad hurt or doing my arms on the elliptical. But weird thing, I can lift weights and not be sore if I do specifically bicep and tricep. I have weeks were the arm is sore, weeks were the leg is. Then weeks when it doesn't. Twitching comes and goes, that I ignore. HERE IS THE BIG QUESTION: Does anyone out there have where one side is effected with soreness and perceived weakness? Always? I mean it doesn't change sides on me. My toes on R side hurt and so do my fingers in the am. I get sore fingers or numb toes on the L side sometimes. But in general, this is staying on one side. My Neuro doesn't seem alarmed by this. I ask him (over and over) if there are others out there like me where it is more one sided. He nods. I need to know if one of you experience this too. The only other constant I have is twitching in my lip if I draw it up like Elvis. I even had tongue twitching last month. It went away, but can I just say....I am scared. I go back for another appt this month. Nervous to go, I have just been pretending this is all normal and ignoring it. Going back to Neuro makes me worry again.Thanks for reading and any response would be wonderful!!!
 
I want to add: I am better on that side than when it started in July. I can do all the things that used to hurt most days. I avoid doing the things that agitate it. but if I needed to grab something, I could (unlike the yucky disease). I just wanted to know if there are those of you out there that have one side that is more effected in soreness.
 
Absolutely. My left arm has bothered me for several months. Its mostly in the wrist and elbow joints, but its in the muscle too. I can do certain exercises with it and have no problem. Other things seem to really aggrivate it. It was never like this before the twitching started. Even then, it didnt start giving me trouble until 5 or 6 months into it.
 
DefinatelyA lot of folks here have most twitches etc. in one side like I do. BFS can be like that. Try not to worry too much. Your post is so full of anxiety. Try to calm down and take it a bit easier...
 
yes my left side is the one most affected hardley ever on my right side untill a month ago had this for almost ten months my toes goe numb as well and also have the rubber band feelings its waaaaaaaaaaaaaaayyyyyyyyyy easier said then done but try to focus on something else you have had clean tests if anything bad was wrong they would have found it
 
for me it is the right side too. perceived weakness in leg and arm on and off. also my twitches were 80% on the right side in the beginning. i was worrying about it too but had found several fellow sufferers on the board.
 
I am a 38 year-old female. I will be two years into a very similar ordeal as you described in July. I have had full body twitches (from toes to tongue) the whole time. It came on suddenly. I have some soreness in my left hand where I have a constant twitch. Still no weakness of any sort anywhere. In fact, last night at my nightly dance aerobics class a women came up to me and said I have been working out behind you for a year and I wanted to tell you that you are in "amazing shape." I say that not to brag but it was unsolicited and makes me feel that my sense that I am stronger than I was when all this started (this stuff motivated me to exercise when before I did not do much) is true and not just wishful thinking. The neuros told me that "something" is wrong but they do not know what and do not think it is the bad stuff either. I like you want to avoid neuros as it causes unnecessary stress. Unless I need more Klonopin (which I have been taking for almost two years reducing my dose steadily) or my symptoms get worse, I will not be seeing them. I think there are just some unknown things out there that can mess up the nerves a bit but not be that devastating unless you waste too much energy trying to figure out the mystery. I am getting better at not doing this. The support from this board and the stories like yours that make me feel less of an anomoly help me a lot.
 
yes my left side is the one most affected hardley ever on my right side untill a month ago had this for almost ten months my toes goe numb as well and also have the rubber band feelings its waaaaaaaaaaaaaaayyyyyyyyyy easier said then done but try to focus on something else you have had clean tests if anything bad was wrong they would have found itThe person that wrote this....is the numbness and rubber banding in the left side?Otherwise......I say this with tears in my eyes....THANK you all from the bottom of my heart. This has been a really, really hard 11 months. I have tried to just give it to God over and over but it gets scary. I have two kiddos and a wonderful husband and thinking that I may have "that which we do not speak of" disease makes me just want to crawl in a hole. I appreciate you all, I can't say that with enough feeling. I really do!
 
yes I have it on the left and right sides the rubber band sensation all the time everyone with this has a different progression of symptoms but if you have had the tests then you are 100% ok you just have a annoying condition called BFS with or with out cramps .... hang in there ok
 

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