2 Years of BFS - The Good & Bad

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D

dravidfanatic

Member
I've had BFS type stuff for 2 years now. The good news is, there are a lot of neuro things that are better. I take no drugs for it, so that's encouraging! (Tho I may start drugs next week, waiting on DRS)

The bad news is, all thru the 2 years I have been SLOWLY atrophying. I have been engaged in normal activities, etc. I have exercise intolerance, so I can't "work out", but I mow, etc. But even places like my eyelids/forehead/cheek have lost some fullness. My big muscles (like thighs) are noticeably smaller.
I'm wondering if anyone else has this?
I get afraid only about this...you can put up with twitches/pain, etc., but you pretty much NEED your muscles--any similar stories/advice?

I know its related to circulation, since I can massage my forehead lightly for a few seconds, and stiffness goes away. If I stay deadpan & don't use my face muscles for awhile, the "fullness" returns.

Any help?
tacketr65
 
Have you discussed this with your docs? Do they have an opinion on it--like do they think it is a true form of atrophy...or, do they think it might be due to your lessened activity (like from the exercise intolerance) over the past couple years?

I'm not sure, but I'd guess that you don't have 'true clinical' atrophy where your muscles are actually wasting away. If you still have fine use of your muscles in doing day-to-day things, then your muscles might simply just be smaller than they were two years ago.

Someone will have to clarify further about atrophy...but I would think that if there was true atrophy happening, you'd find that you'd be having a tougher time with small tasks like mowing your lawn or even buttoning your shirt.

It seems like you notice the atrophy only when you are examining your muscles (like in the mirror) Despite the exercise intolerance (which many of us here have, including me), it sounds like you manage your daily activities just fine. I'm betting it's just normal changes in your body.

Another thought: if you've been under a lot of stress, that can cause physical changes in your body (like from loss of weight and overall muscle stress I think).

I wouldn't worry unless your docs say otherwise. When we overanalyze our bodies, we tend to find all types of things like this.

Amy
 
My muscles are constantly changing - diet, stress, viral causes, etc. all can produce dramatic changes in body tone, etc. I was CONVINCED my left arm had begun to shrink 3 months into this (my post saying that is still on here somewhere)...4 months later, mass is back, and really, I have no idea what caused it.

Stop worrying about it - your body will be just fine.

JG
 
Nooo...thanks for the encouragement, but I have lost "fullness" in my skin & muscles. My Family DR says it is true, as does my DR at Johns Hopkins, so I'm not just imagining this. I don't look like a POW yet or anything, but its there and obviously I want to reverse it.
It has nothing to do with exercise unless I have had TOO MUCH for the amount of blood my nerves are allowing into the muscle tissue. Sort of like the effect bicycle racer's muscles get from day after day of aerobic use...they get skinny because they outstrip the blood's ability to meet the demands of the muscle. I have been doing things like using a chainsaw, mowing, swimming, etc. I don't have weakness, but my muscles "pump up too easily" & fatigue too quickly.

My DR said anytime you have a nerve malfunction, the muscle cannot properly communicate & can be affected.

I'm just wondering if anyone else has some of this, or do I not fit in with the BENIGN of BFS? Maybe I don't have BFS?All my universe of tests/labwork shows me as normal...
Appreciate any more ideas,
tacketr65
 
Tacket -

No discussion from your physician on why/what this is? Was he/she concerned? I guess I find it a little hard to fathom that your physician would "confirm atrophy", yet not offer any global explanation and/or prescribe a course of treatment for you.

In a nutshell, I think it virtually impossible you will glean anything from here on your atrophy that exceeds the clarity/benefits of what your physician can/should provide. I think you need to be posing these questions to trained professionals, and seeking treatment. Just my humble opinion.

I wish you the best - I think if your doctor was relatively unconcerned, I'd take great comfort in that.

JG
 
My family DR agrees with the loss of tissue. He is concerned, but is deferring to my rheumo & Johns Hopkins internist as far as the next step. My next appt is weds. next week.
Right now is some discussion about neurontin/Benzos.
The bit of delay in treatment is for 2 reasons:
1. My Mayo Clinic neuro said it was all in my head!! That was in April at a follow-up EMG(my atrophy was just becoming visible, even to me), so I lost all that time that I could have been treated...my other 3 DRs all agree this is NOT in my head, thank goodness.
2.I was tested for Celiac Sprue and came up positive on the blood test, so I had a biopsy to confirm, as sometimes it can attack your nervous system. My DRs have been waiting for the biopsy results, which are now in--I was negative for the Celiac. So, treatment can begin...

I just can't believe that I'm the only BFSer that has tissue shrinkage/muscle loss...seems strange
tacketr65
 
I can't say that I have seen any atrophy since developing BFS but I have definitely seen what appears to be thinning of the skin in certain areas. My hands look much older than they used to be and at first I of course feared that it was atrophy as well. After careful examination though it appears more related to loss of thickness in the subcutaneous fat layer of the skin. The same applies to my feet, and to a lesser extent my neck area. I too have had BFS for about 2 years and I am 45. Some of this might just be normal aging. It does appear to be more than that though. I have had no strength loss and I continue to workout with weights in spite of exercise intolerance. I can still do shrugs holding 100lbs. dumbells so my grip strength is obviously still intact. I know for a fact that my thighs would lose probably a couple of inches if I quit working out, so that might be part of what has happened with you. The other thing to keep in mind is that we probably burn alot more calories than we used to just from all the twitching all day and night. That energy has to come from somewhere, why not the subcutaneous fat layer.
There is alot about BFS we still don't know. In fact the reason it is called Benign Fasciculation Syndrome instead of just Benign Fasciculations is that it is recognized that there is more going on than just fascics. We can all atest to the crampiness, aches/pains, exercise intolerance, stiffness, sleep disturbances etc... The loss of fullness as you describe it may just be one more poorly understood manifestation of the syndrome. Obviously not everyone has every symptom, but it seems that most of us have at least some of them. Maybe, once we determine the cause, more of this will make sense. I hope so anyway!
 
Good point, Joe. Without effort, I have lost a few pounds in my 3 months of BFS. I thought it was just due to worry, then I thought it was a side effect of Zoloft (which has reduced my appetite, but not much), but you're right - it's likely that this hyperdrive state causes us to burn more calories! Don't advertise this, though, or my friends will be begging to "get infected."
 
They would be begging to be un infected really fast though woudn't they?????? ;)

I just told my husband this morning that I thought my hands looked older than my age. I also lost weight at the start of this and am starting to gain it back but my hands are not puffing up or my legs either like they used to be long ago before I lost 47 pounds on Weight Watchers. I am not pre pregnancy weight now but I am no where near needing to lose 47 pounds again BUT I still think something is different with my skin or the layers of fat. It's just not the same. Can't explain it.

Karen
 
FINALLY!
Thank you all so much for responding! I thought I was crazy. Sounds like maybe I am not so far off the mark after all ...maybe just more of an over-acheiver at BFS symptoms than the rest of you! :confused:

I do NOT have ALS, nor MS according to Mayo Clinic and a few others. I have had every test/MRI/EMG etc that 7 different DRs of various specialties at places like Mayo & Johns Hopkins can dream up...they all tell me there's nothing left to test for--all the rocks have been looked under. I do have virtually every symptom of BFS, as presented on this site...my family DR agreed when I showed him a print of the FAQ page.

Interesting points about the aged hands look...that's the first one I noticed. Then, the fact that my skin looked too thin in other places. Just like what I'm hearing (feet,neck, etc.) I like the idea of the calorie burn theory and "subcu" layer description--that makes sense.

Thanks everybody! Keep any suggestions coming. I'm going to run this by my DRs and see if any light bulbs go off for them.

Keep fightin!
tacketr65
 
I am with you all on the 'skin looking older' issue. Don't know if it's age catching up or not. However, my skin is really dry and scaly--and even if I use a ton of moisturizer--my skin just seems more ridgy than normal. I am going to pay extra close attention to my friends' skin and see if I'm just being over-analytical.

-Amy
 
You said you tested positive for iliac sprue? When are they doing the biopsy? If you do have it your body does not absorb nutrients. The longer you eat the wrong foods the more damage it does to the lining of the gut promoting even more malabsorption. Anything with gluetin in it will flair it up (and there are SOOOO many things with that it it!). I have a relative with it and it took awhile to diagnose. He was literally wasting away, looked like he had cancer until he was diagnosed. He had to make a huge change in his diet and he did so much better. Get that ruled out before you go onto anything else! It's an autoimmune condition and more prevelant in people with diabetes.
Good luck!
Sue
 
Sue,
Thanks for being concerned. Your medicine is correct! BUT, I do not have it. I wrote that I tested positive (ie blood test), but had the biopsy already and it was negative...I know for a fact I do not have Celiac Sprue disease.

Maybe I said it in a confusing way. That's 1 reason my current DRs have been slow to get going on treatment--they were waiting to get the biopsy results to see what to do. Results are in, and that aint it!

Now they STILL won't know what to do. One's mentioned neurontin, one's mentioned benzo's, one says let time do it, since I've improved (SLOWLY) in the last year...anyone have a suggestion? :unsure:
tacketr65
 
I use low dose neurontin (300mg at night). It helps me sleep and reduces the pain and stiffness. I can't say it actually reduces the twitching, but that has never bothered me as much as the pain/stiffness. I will warn you though that it seems to be a mild diuretic for me as well. Therefore the loss of fullness that you speak of may become more pronounced. Not a problem really, I just wanted you to be aware of that if you decide to give it a try. Good Luck!
 
Hey tacketr,

Sorry to second guess here, but are your docs 100% sure about the biopsy? Can't there be sections of the intestine that still appear normal? I read a little about it after I saw your post, and it seemed that not all areas of the intestine are affected at any given time (???) Plus it's a condition that can improve or get worse over time with exposure to diet, so maybe they biopsied an area that was imroved or hadn't yet been affected. I'm probably wrong, but thought I'd ask anyway.

Anyway, did your doctors suggest a gluten-free diet for a trial just to see if it helps? It might be worth trying since your blood test was positive.

As far as the benzos--go for it! I took xanax for an entire month as a regimen to get my mindset out of 'worry' mode. I took a very low dose (half tablet three times a day) and it didn't interfere at all in my day-to-day life (no grogginess or anything). In fact it improved my life because I was able to function with more 'ease' and far less 'worry'.

I wish I could be more helpful!

Take care for now-
Amy
 
I think it's worth a try to do a trial diet. Can't hurt. My friends son was neg then pos (bloodwork, I don't know about bx) and a lot of time was wasted in treatment.
 

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