THE SYMPTOMS, DO YOU GET THEM? I'M CONCERNED.

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THE SYMPTOMS, DO YOU GET THEM? I'M CONCERNED.

Postby utahguy058 on March 31st, 2014, 3:20 pm

I was officially diagnosed with BFS on Friday. It all started in August of 2013 with a numb foot and eyelid twitching. I spent the next 5 months of hellish symptoms. The twitching was the least of my concern. I could deal with that. I had, and still have twitching in my feet and calves. Eyelids come and go, and then random poppers throughout the body. The symptoms that concern me most are the sensory symptoms. Do many of you have this. I go between numbness, pins and needles, buzzing, vibrations, feeling like there are water drips, and the one that drives me mad, BURNING. I don't hear many people talk about burning sensations. Is this something people get? It for sure ramps up with exercise. In fact I like many was extremely active before my BFS started. Because of my sensory symptoms I was convinced I had MS. I had a brain MRI, and cervical MRI. I was sure they missed something or I was the 5 percent without lesions. I had every neuro test ever over and over, and never had any issues. WORST ANXIETY OF MY LIFE. FInally at the start of January the symptoms subsided beside occasional twitches. THen just a week ago the symptoms started to come back, and by symptoms I mean the sensory symptoms, and more widespread twitching. I guess you could call it a flare up. I had begin to be more active and don't know if that brought it on. I am now anxious over how long these symptoms will last. The numbness, the burning and the muscle pain in shoulders, and random moving pain is back. DO people get that as well? I'm wondering if I am in the normal realm. Is the idea of relapse then a flare up normal. Granted this flare up is nothing like that last. The last was much more severe. Is this to be expected with BFS, come and go symptoms. Starting to feel normal again and then bam, back into the thick of it? I would love input on this, especially if you can relate more with the sensory side of things, and the BURNING. I don't many people say they feel burning in feet or anything. Thanks for all input. SO APPRECIATED

KC
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Re: THE SYMPTOMS, DO YOU GET THEM? I'M CONCERNED.

Postby keomagnes on March 31st, 2014, 8:12 pm

Hey Buddy,

Don't be so stressed about it, I'm not an older user but from what I've read here on the forum the burning sensations are quite normal between 'us'. I get the 'pin&needles' from time to time.

And it's really hard to deal with the symptoms because we never know what's related to BFS or not! But believe me, if you were diagnosed with BFS try to not think about other stuff. Try to ease your mind and learn ways to control your thoughts (I'm working on that now). It seems that when you stop thinking about it the symptoms seem to fade away. I believe our mind's as a big role on this!!!

Hope you get better!
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Re: THE SYMPTOMS, DO YOU GET THEM? I'M CONCERNED.

Postby donnastar on March 31st, 2014, 11:00 pm

Hi KC,
Sorry to hear about your BFS flare up and but really good to read it's nothing like the last one. I can't comment on what your new normal will be but be assured many of us suffer from the unpredictable flare ups. It is important to learn what factors contribute to making your symptoms better or worse. I too suffer similar sensory issues internal vibration, burning pain in my feet (sometimes my hand), some numbness and tingling along with the body wide twitching. Unlike you I haven't had a MRI so once in a while I let the fear of MS set in (especially during the days of "dam, back into the thick of it" as you describe. Exercise can be a contributing factor for many. My suggestion is to stay active, push through verses letting the symptoms "push you down"! It's a real mind game I know. Sending good thoughts your way and hope things are much better soon.
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Re: THE SYMPTOMS, DO YOU GET THEM? I'M CONCERNED.

Postby utahguy058 on April 1st, 2014, 1:54 am

Thanks so much for input. It makes me feel a lot better to know I"m not going through this alone. I sometimes wish that there was a way that we could be in person versus virtual. Just to see others and talk directly to them about the pain that is BFS. It isn't fun that's for sure. I think that stress and anxiety make my symptoms worse and I think that exercise can bring them on. Which I think is so tough for us with BFS as most of us are an active bunch. It's trying to find a way to stay active and not have the pain that can come with it. I don't have the intolerance per say, but I get the sensory issues with it. I can do it, but I just wake up the next day with numbness or burning feet and of course all the fun twitching. Here is to hoping that the flare goes out sooner than later. Any more comments or input I would love!
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Re: THE SYMPTOMS, DO YOU GET THEM? I'M CONCERNED.

Postby ShawnW on April 1st, 2014, 2:16 am

You will read hundreds of posts just like yours here. If you have been worked up, and your neuro says you are ok...accept that.
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Re: THE SYMPTOMS, DO YOU GET THEM? I'M CONCERNED.

Postby Watereddown on April 1st, 2014, 3:01 am

I have felt absolutely every symptom you have described. Check out my comment history and you'll see. There are plenty of us on this board that have as well.
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Re: THE SYMPTOMS, DO YOU GET THEM? I'M CONCERNED.

Postby utahguy058 on April 1st, 2014, 11:19 am

Thanks for responses! It just seems so strange that for a syndrome with Fasculations in the title, they're sure is a lot of sensory issues. I imagine that there is a good chunk of BFSers out there that don't deal with that side. Oh how I'll trade you all! I would still love input and experiences, and also.... With BFS do you go visit neuro to check up every so often to make sure that things are fine, or if there is new news they can share? Or do you just stop going to the neuro?
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Re: THE SYMPTOMS, DO YOU GET THEM? I'M CONCERNED.

Postby nervous nel on April 2nd, 2014, 1:29 am

Hi, I have the same stuff and have done for years now docs think I may have fibromyalgia aswell as this bfs, I have burning in my muscles and hot flashes of heat across my face and hwad when something hot touches my skin and feel feet feel hot and prickly when I put them on the floor when i wake up some mornings x where do you twitch? x
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Re: THE SYMPTOMS, DO YOU GET THEM? I'M CONCERNED.

Postby utahguy058 on April 3rd, 2014, 10:58 am

NEL. I twtich in my calves and feet and eyelids are my main spots. The calves and feet have not stopped in 7 months. Then I have random poppers all around the body. I wouldn't say my burning is on the outside hot or have hot flashes or anything. Just a dull burn that tends to be around when I lay down or when I wake up and sometimes after a lot of walking. The feet is the main spot and ankles. But then it can disappear for a long time. It is sensitive to the touch by any means. I have wondered about fibromyalgia just because I have some pain involved, but can pain also be a part of BFS?
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Re: THE SYMPTOMS, DO YOU GET THEM? I'M CONCERNED.

Postby nervous nel on April 3rd, 2014, 5:49 pm

It definitely can be part of it, if you search for fibromyalgia tender spots, there's 18 areas that should hurt to press, at least about 14 should hurt to be fibro
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Re: THE SYMPTOMS, DO YOU GET THEM? I'M CONCERNED.

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