New to BFS

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

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New to BFS

Postby ahanno on March 18th, 2013, 9:06 pm

Hi all the way from Australia. I am a 33 yr old gal with 2 beautiful boys, 3yrs and 5months and a wonderful husband who works very long hours. I am currently in the process of getting a "diagnosis" of whats going on with this body of mine. Having come across this site, it is the most reassuring I have found as SO much of what people are talking about seems to match me. Having said that I havent officially been diagnosed with BFS, so would someone mind telling me the process they went through to come to the conclusion. My story is that I first started getting extreme muscle aches in my legs (simply exercise would make me feel like I had run a marathon) when I was pregnant with my first child. I then had an terribly stressful and painful pregnancy with threatened prem labour due to an irritable uterus (basically a uterus that contracted non stop for the last 3 months of the pregnancy). After the birth I got back into life as best I could and thats when the twitching and muscle cramping started. Cramping so bad it felt like I had torn a muscle - and twitching mainly in my legs - anywhere from the feet up to bottom. Periods of these symptoms have now been on and off for 3 yrs....symptoms get worse during stressful times and times when I am tired/worn out/exercise. My recent onset has lasted the longest and occured after I started back running at the gym (i have always loved running) and I did 2 big runs in one week - that weekend I could barely walk from the pain/ crazy twitches. Over the course of the years the doctor has prescribed me low doses of antidepressants, sleeping tablets (as I have never slept well), and I have tried almost every natural remedy/therapy there is. Anyway, Im just asking to get peoples advice on what things they think help reduce the attacks (i am now trying to cut our alcohol and caffine too) and the process they went through to get a diagnosis. I am so over doubting myself and thinking it is a stress/anxiety/ reaction to lack of sleep. Thanks ever so much for your help. (ps. i am having a sleep study done and am seeing a neurologist in a few weeks, but i am really scared the symptoms ive explained wont be present during the neurologist examination). thank again
ahanno
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Re: New to BFS

Postby Floydian on March 19th, 2013, 4:10 am

Welcome on board, I think almost everyone here can relate to your symptoms. For me it started almost 1 year ago with a lot of pain and sensory issues in my arms. A few weeks later the twitching started in my legs and spread to other body parts. Like many of us my anxiety was sky high and it surely wasn't the best time in my life, believe me. I've seen many doctors, had done all kinds of bloodtests, MRI's, X-ray's etc.... which all came back normal. I was very thankful that I was fine but at the same time I wouldn't believe it because so much crap was going on in my body, I was convinced something had to be wrong. But after 6 months or so I came to a turning point where I decided that there was nothing wrong with me, although I had (and still have) a lot of symptoms and flare ups. I wasn't officialy diagnosed with bfs but my neuro told me it's likely benign (which means good) as almost anything else was ruled out. And if there is no clinical weakness you will be fine. When I visited the neuro there was no single twitch..... very annoying. But don't focus on that, your neuro knows what to do and where to look for.
What helps for me: ALL THE KIND PEOPLE ON THIS FORUM, stay away from Dr. Google, stay positive, listen to your doctors, mild exercise, go out and enjoy life, hot baths/showers, sauna, meditation, massages.
If you need any reassurance feel free to pm me. Take care, you will be fine.
Floydian
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Re: New to BFS

Postby ahanno on March 19th, 2013, 7:29 pm

Thank you so much for your kind reply Floydian. Its funny, Im not actually worried that something terrible might be happening to me, I just want to know what it is - and kind of put a label to it, as when I try and explain to friends/family that there is something wrong with my legs, they all ask "well what?". I did just see my Chiropractor though and my spinal x-rays show moderate curvature and mild osteoperosis - which he says could explain the cramps, as my body is not absorbing minerals properly. Im not too sure how this explains the twitches (which when i pay attention to are also in my arms and back). And he also suspects a disc bulge which i will have to have an MRI to confirm. Anyway, as you said, it is all a process of elimination and after seeing the neurologist, I will be more confident in whats going on. I still suspect BFS for sure tho as all the stress/anxiety indicators are there. I appreciate the time you took to get back to me, and keep me posted if you find any other remedies to help (I use all the ones you have suggested already :))) - on one last note - how do you find alcohol and and caffine affect your symptoms?....I am trying to cut back on them socially, but still want a life!!!!!
ahanno
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Re: New to BFS

Postby Floydian on March 20th, 2013, 4:29 am

ahanno wrote:Thank you so much for your kind reply Floydian. Its funny, Im not actually worried that something terrible might be happening to me, I just want to know what it is - and kind of put a label to it, as when I try and explain to friends/family that there is something wrong with my legs, they all ask "well what?".

I completely understand the fact you want to know what is wrong with you. But don't expect too much as there may nothing to be found like many of us here. So try not to focus on it as you will end up in a negative circle. I was in the same place and it didn't make things better so I stopped looking for answers.

ahanno wrote: on one last note - how do you find alcohol and and caffine affect your symptoms?....I am trying to cut back on them socially, but still want a life!!!!!

For me alcohol and caffine do not affect my symptoms but that is different to everyone.
Floydian
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Re: New to BFS

Postby ahanno on March 25th, 2013, 11:40 pm

Hi floydian and who ever else is out there!
Had a really bad weekend, the symptoms are now affecting my day to day life as the pain is making it hard to do things - simply standing cooking dinner at the stove, my legs ache so bad I have to sit down. The burning sensations are awful. And to top it off, I have started having little panic attacks. When I am so tired, the pain seems so much worse and hard to bare, the thought of having to go to a scheduled event makes me go into a panic attack as I dont know how much worse the pain will get. When I come home from being out I just lie there and cry from the throbbing pain. This is not normal. I used to be such a capable and confident person and this dam situation is driving me nuts. I know you have to get on with things, but when getting on with things makes the symptoms worse, what do you do? I have had to put my children into daycare and all I do is lie around and rest when i can. But how long will that last? I am only 33 and feel like an old woman. Did you go through this? Does the pain go away? Did any medication help (my doc has increased the antidepressants, but that hasnt helped and he feels at least this will show the neurologist its not my mental state causing the symptoms - but something else) Have looked into Peripheral Nerve Hyperexcitability (where anticonvulsant drugs may help), have you heard about this?
Only a week until I see the neurologist.....
ahanno
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Re: New to BFS

Postby Floydian on March 26th, 2013, 5:44 am

Hi there, your situation is very similar to mine. I was in the same, dark, place and I too had panic attacks. I had pain issues 24/7, no matter what I did, nothing seemed to help (to be honest, nothing did help at that time :? ). I did get some medication but it didn't do anything good and besides that they triggered my panic attacks so I stopped. I also stopped searching for the cause of all this crap and instead I focussed on positive things. That's the hardest part and it's a long ride. Although I still have flare ups and (pain)issues I feel much better these days. And maybe I'm stuck with it the rest of my life or maybe not, I don't know but I'm not letting this crap take over my life. As I said, that's very difficult when you feel like a wreck, but I did, many others here did and you will get there too, you're in the right place here. Hang on and don't lose hope, you will be fine.
Floydian
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Re: New to BFS

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