My 1 Year Update

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My 1 Year Update

Postby jenni on November 30th, 2014, 7:27 pm

Hello everyone, this is my first post to this community. I thought I would share my story to help anyone out there, since this site offered me so much help after my initial diagnosis with BFS. Admittedly, this ended up being a long post so if you’re a skimmer move down to the paragraph starting with “I got better.”

My BFS started after Thanksgiving 2013, when a really strong muscle twitch in my left quad woke me up one morning. It lasted a few hours and went away. I didn’t think too much of it and then continued on with my routine the next day… which consisted of a rigorous gym weightlifting plan that I had been performing for a year and a half. Well, a few days after that workout the twitch came back and then went away again. A week later it happened again. I saw my GP who was concerned about the local activity of the twitch and threw out MS.

I have always been an anxious person, especially about my health, so when my doctor mentioned MS and brain lesions I panicked. Which as we all know, made everything SO MUCH WORSE. A few days after seeing my doctor, the twitches were everywhere, my body shook with them. I thought, “Okay, I’m going to die.”

Once the twitches were global, as my GP put it, which made HIM feel better about it, he referred me to a neuro. The neurologist was an older man who tested my strength, asked me some questions about exercise and diagnosed me with BFS. He said if I stopped exercising it would go away. He himself would get twitches when he ran and then went away when he stopped. I decided to go with an EMG just to rule out anything else, but he was not worried. Two weeks (and a hellish New Year’s Eve planning my quick demise) later the neuro said everything was fine and it is only BFS. By this time I had found this website and had read about BFS. I knew that while it may technically be benign its symptoms were by no means benign on one’s quality of life. Basically a “You’re going to live!! But with this big bag of [email protected]! impairing exercise, concentration, and sleeping for possibly the rest of your life!! Yay!”

As you can imagine I spiraled down pretty quickly, my family became worried and I moved back in with my parents. I knew it was not A** or MS, but the thought of dealing with these symptoms the rest of my life disheartened and depressed me so much. I was having trouble sleeping and the slightest exertion gave me exercise intolerance. By now, I had realized that anxiety made the symptoms worse. I would try not to get upset, but at night I would feel so much fear that I would not be able to sleep, that my anxiety would skyrocket. I would stay up as late as I could, 3am, then 4, 5, finally 6am, just to become so tired I would be able to pass out through the twitches and have complete exhaustion take away my anxiety about falling asleep. I would just lay around feeling sorry for myself and watch tv. This went on for almost 2 months.
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Re: My 1 Year Update

Postby jenni on November 30th, 2014, 7:28 pm

Then one day a lucky thing happened… I got bored. Bored with what a waste my life had become. (Well… and I read an interesting story on how antibiotics are failing and we may all die in 20 years anyway, which made me realize this wasn’t how I wanted to live what life I had left, but that could develop into a tangent so I’ll gloss over it.) I got onto this website, poured through old posts, symptom management suggestions, even talked to a few veterans. I decided I was out nothing if I gave the treatment ideas a try. So I committed to trying to limit inflammatory foods, eat less gluten, take supplements, try BFSBurger’s regimen, even MarioMangler’s blunt “just find the humor in it all and move on” suggestion.

I got better, not overnight mind you, but slowly the twitches lessened in force and frequency. The slow improvements gave me hope, which is all anyone really needs. By April I could sleep through the night, 7 or 8 hours again, which is a relief that I cannot convey through words. I found a less stressful job and tried to blow off the twitches I would get as nothing, just a passing annoyance or a funny quirk of my body. I began to do things I had always wanted to do: a fun exercise class, a vacation to Europe, a crazy fan event akin to stalking my favorite author, began writing my own book, etc. My point is that once I made the choice not to let the twitches control my life, my life got better. Twelve months ago I could not imagine myself making that statement. I still get twitches and probably always will, but they are a lot better and only annoy me now. To be honest there is also frustration and anger involved with the annoyance (after all, my own two decades’ worth of anxiety created this havoc on my body). I imagine only time can help me with that.

In case anyone is curious, here are the medications that I take and lifestyle changes I have made. I believe that they have helped me get better. Maybe they will work for you and maybe they won’t.

Gabapentin 300mg
Potassium Hydrochloride 10 MEQ
B12 500mcg twice a week
Flaxseed Oil Capsules
Magnesium 250 mg

Every day I drink a can of V8 or tomato juice for the high levels of potassium. I eat bananas and potatoes also. While I still eat gluten, I think that limiting it at the beginning helped. I stopped exercising for around 4 months and then slowly started lifting weights again. Now I twitch less after exercise than I did 8 months ago. I take salt baths after I exercise and make sure to get as much sleep as possible. When some anxiety does strike me at bedtime, I take a Unisom doxylamine succinate tablet to help me fall asleep.

Oh, and I stopped visiting this website. In the beginning it really helped me and allowed me to connect with some veterans. Now I avoid coming here. Anxiety is contagious and the newbies (and sadly, many non-newbies) radiate anxiety and panic. Read the information, talk to a veteran and really listen to them (thanks again, Mario), then move on. I hope this helps.

Jenny
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Re: My 1 Year Update

Postby MarioMangler on December 1st, 2014, 11:49 pm

Good to hear from you Jenni. Glad I could help. :D
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: My 1 Year Update

Postby Yuliasir on December 2nd, 2014, 1:21 am

As one of my favorite browser games says, Time, the healer, brings the reward :)
Good to see time and efforts had worked for you.

(By the way we would not all die in 20 years becasue of antibiotics fallen as new strategies are on the way, among them using bacteriophags, as well as personalized therapy. Of course if we will survive all other risks)
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