Hello Everyone,I found a thread on this site discussing the difference between "perceived" weakness and "clinical" weakness, but I'd like some of the old-timers and newbies (like me) to comment on this distinction. From what I have read, "clinical weakness" is simply weakness that shows up on a clinical exam, like you can't squat down or you can't walk on your toes. It is real weakness that has been caused by damage to the muscles, peripheral nerves, or central nervous system. It is real because of the damage that has been caused and it is obvious to a neurologist.While BFS does not cause clinical weakness in the sense that you may fail a neuro's strength test or have damage to your nerves, it does cause "perceived" weakness which is often called "exercise intolerance." My question is, "How is exercise intolerance different from weakness?" For example, my BFS causes my forearms to become easily fatigued, which I describe to others as being "weak." They are a little stronger now, but six months after the onset of my symptoms, my forearms felt exhausted simply from typing a sentence. Also, my legs felt weak and it seemed like a burden just to climb the stairs. It felt like I had always just finished 100 reps of wrist curls and 100 squats. The weakness may not have been clinical, but it was (and is) very real.I just want to clarify that "perceived" weakness does not mean "not real." It is real, but it is not clinical, it is not permanent, and it is not caused by damaged tissue. Knowing that I felt weak, I was not encouraged by comments on the site like, "Don't worry about it if you have no weakness" or "neurologists don't care unless they see weakness." I believe a lot of us on this site who have been diagnosed with BFS do have real weakness. Maybe we should just use the phrase "clinical weakness" when referring to the kind of weakness that indicates motor-neuron disease. Using the word "perceived" with BFS weakness seems to me a little misleading. Is it wrong to say that weakness (not clinical) is one possible symptom of BFS?-Joe
Perceived vs Clinical Weakness Discussion
- Thread starter Poppyseed
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GrizzlyLeader
Well-known member
When I 1st really thought I had the dreaded stuff, I honestly felt like my legs were getting weak. I remember taking my 12 year old daughter to the homecoming football game, and it felt like my feet were dragging the ground the whole way from the parking lot. In a sense, I had already convinsed myself I should be or suppose to be getting weak. Some days certain activities do leave me drained, but most times not. I brought on my percieved weakness from being mentally weak. Im not saying you are mentally weak. But in my case, I was pathetic.
ionyZarrion
Well-known member
Weakness is subjective. A man of 90 and a man of 25 will have different levels of strength...just as a heavy man/ skinny man would differ.Clinical weakness how docs to understand the difference. This is why the strength tests at the docs are almost ridiculously easy. No weakness no worries holds true because if you are clinically weak then not only would your everyday activities be seriously affected but you would not regain strength after any amount of rest.I think that bfs/bf/pnh affects strength but I would go with the exercise intolerance rather than any actual weakness as such. The difference for me is that the strength comes back after rest so its more of an endurance/intolerance thing.But that is just me.
FantasticFurball
Well-known member
Its very simple. If you are clinical weak you WILL fail the neuro xm. And you WILL notice some problems. If you are not clinical weak, but you fear that you are, then you WILL find weakness all over the place. Most of us here are in their 30s and 40s. We are getting older. We do sports, but injuries, tremors, and pain are getting more profound as we are aging. Imgaine that you would never have knowledge of neurological diseases, then you wouldnt give it a thought that your forearms hurt a bit or you where loosing a bit of power in your leg. But now - with all that mumbo-jumbo stuff on the internet - well, everything your body does must be something terrible, right? And you cant be 100% sure, right? Maybe the neuros missed something, right? Maybe it IS clinical after all, right? Even EMGs are not certain, right? Get away from this stuff, and this site (and others) fast. Just an old-timer advice...
BramTyBram
Active member
i am pretty new to this as well and i have to agree with the view that if we never had the information most of us wouldnt even know we had an issue. I can only speak for myself on the perceived weakness but when i thought i had it i wasnt eating the same foods (or any for a while) that i used too. I stopped exercising and worst of all i paid too much attention to every ache, pain, twitch, swallow, etc... and that alone made me feel weak. Once i believed what the docs had been telling me and i started going back to my normal activities i gained my strength back and i still notice too many things with my body, but it gets better if you make peace with it. My twitching is non-stop and it moves all over but now i only notice it when i stop to look for it and that keeps getting less and less. Good luck.
We know that BFS causes exercise intolerance. That symptom often shows up on the short list. In my case, exercise intolerance showed up like this: I felt tingling and electrical pulsing sensations in my arms over a period of about a month and then BAM, the next month typing a sentence or just pushing a grocery cart tired my forearms out. They always felt like I had done 100 wrist curls. To me, that is indistinguishable from weakness. If you can bench 200 lbs 10 times one month and only once the next, you've become weaker. That is weakness. Now that I am 38 years old, I know that I'm not as strong as I used to be. I was a wrestler and I prided myself on my iron grip. However, the weakness I experienced in my grip strength did not build up slowly over the years. It suddenly and dramatically arrived with my other BFS symptoms. Thankfully, I have grown stronger in the past 18 months, which is why I say the weakness is not permanent.I want other BFSers to know that even if they experience weakness, it does not mean that they have a horrible disease.-Joe
Thanks for your reply. In reality, I don't have only 10% of my original strength, but on some tasks (like digging a ditch) it feels like I have only 60-70% of the strength I had before my attack. Therefore, I am weakER than I was, but I guess that does not constitute weakNESS. So, maybe people will be more likely to agree that BFS causes measurable weakerness.What is Small Fibre Neuropathy? After ALL of my testing, my neuro was very careful to point out that I had no neuropathies. I definitely get an occasional electrical pulsing sensation in my forearms and hands, so I'm wondering what you have.-Joe
AllGoodHere
Well-known member
jk..... - perception is the biggest part of perceived weakness. What you think you can do you often can and what you doubt you cannot you will have trouble with. I'm not being esoteric - just practical as we need out minds to be part of any movement just as we need our other body parts. The reason why Tiger fell off his game, in other words; it's not like he was all of a sudden a weakened player, his mind was distracted by all the media stuff and his embarrassment. Reading through this post I think that yes, I remember being less able muscularly when bcfs was the worse and still have more radical ups and downs with it than I can accept. But if you are twitching and spasming then your muscles will likely get fatigued by it, if you are not sleeping well because of symptoms or whatnot then you will feel tired and less able. It makes sense that you will feel weaker because you are taxing your system. For me the hard part right now is getting back my strength after my bcfs slide - this is why I'm always telling people 'no don't stop working out, running, whatever you do, as it will only make you weaker'. I wish I hadn't listened to some of those specialists who told me to lay off - not only does it impact your health but you then are playing the patient by restricting your activity, letting it rule your life, and giving in to the idea that this is what you are becoming. You become what you practice in the end and turning that around is difficult (at least for me).PrickLedPin - it looks like you had the same trouble I did with the site & multiple postings (when I submitted it and it didn't happen after a very long while and I submitted again). You have to go and back & delete........easiest through edit.
After researching Small Fibre Neuropathy, I'd like to interpret that last post. I believe PinPrick is just trying to explain our BFS sensory symptoms. According to the research, 33% of BFS sufferers experience sensory symptoms. According to this site, it seems like the number is higher. BFS is primarily a diagnosis of twitching. I believe the neuros tend to ascribe the other symptoms, like numbness, itchiness, and sensitivity, to anxiety, perhaps because the peripheral auto-immune mechanism does not affect sensory and motor nerves in the same way.However, the experience of BFS sufferers indicates that the sensory nerves are absolutely affected in the same way as the motor nerves in MANY cases. If PinPrick wants to call this SFN, it doesn't really matter. As many of us have experienced, the twitching and sensory symptoms came together as part of the same syndrome and arrived at the same time. It is not two separate things to worry about; whatever caused the benign twitching also caused the sensory symptoms and it tends to migrate around our bodies and lodge in certain nerves and wax and wane, but it is not progressive nor debilitating (unless we let it infect our minds with worry.)Same cause. Same syndrome. Nothing new to worry about.-Joe
Everything I have read and been told by my docs, SFN is progressive, and once it reaches a certain point, it doesnt wax and wane much.
)AllGoodHere
Well-known member
Hi Joe, It seems like you feel confident in your grasp of what is happening with you. That is good but stay open to opinions as that is the only way you will find yourself out of the bfs maze. Moderate exercise because. , , , . why? Are we weaker or just tired? Is it a belief system or a reality? My experience doesn't support the idea that exercise need to be this or that - only that you have to mentally and physically be ready to handle it and that can vary day to day. If you believe you are capable then you are. Yeah, maybe you will shake a little and feel less strong but so what? how else will you move beyond it? I realize that often it is fear that is holding me back rather than actual physical limitations. Perhaps it is different for different people, I cannot say. I only know that slacking off physical activity did me no good in the long term. Pinprick - whatever it is you can be sure that if you find a name to tag on it, it will become more real than it was before you knew what it was. The human body is amazing so if you really believe it is in your case caused by a virus then bolster your immunity and work toward healing rather than labeling.
AllGoodHere,In general I hold to the maxim "everything in moderation," even good things like exercise. I agree that for everyone that limit is different, and I have felt a lot better about myself since I recently allowed myself to exercise a little bit harder (e.g. 100 push-ups per day instead of just one set to failure.) However, my neurologist told me that pushing things too hard actually aggravates BFS (he himself has a mild form of BFS with only the twitching and cramping with no real sensory symptoms).When I first started experiencing my symptoms I was pretty sure I had *** or ** and was a goner for sure. After nearly two years of symptoms, 10 visits to 2 different neurologists, 2 MRIs, 2 EMGs, 2 clinical exams, a spinal tap, a chest x-ray, and countless blood tests, my neurologist told me my condition was most likely a benign condition (BFS) and the most recent research pointed to it being an autoimmune response to something like a virus. Part of me still wants to keep worrying in the face of all that evidence, but the rational part of me wants to just believe my neurologist and try to calm down my immune system to reduce my symptoms.So many of the old-timers on this site point to the "power of the mind" as the answer to BFS, so I suppose there is a lot of wisdom in that. However, in my experience there has been almost a complete disconnect between my state of mind and my symptoms. I've read the stories of many people on this site whose BFS arose while on vacation or in other situations where there was no mental catalyst. I can cause symptoms by stressing out about something or getting very nervous, but I believe that happens because my nerves have already been physically weakened. What first brought on your symptoms? Were you in a stressful situation? Did you have a virus (as I've said, that was my personal experience)? Do you believe that BFS is mostly physical or mental? I am guessing you think it is mostly mental. To me, it feels like BFS is about 10% mental and 90% physical. What do you think?Even though I think it is mostly a physical problem, I am trying to ignore my symptoms as a form of treatment, and I believe that has been effective for helping my mental attitude. The physical problem is still there, but I just feel better about it.-Joe
AllGoodHere
Well-known member
Actually I don't think that the mind and body are separate anymore than your foot is separate from your hand. We are interconnected on all levels and one does not work without the cooperation of the other. I believe mind and body work together in all - sometimes positively and sometimes not so positively. You can initially separate the emotions - say something social happens and you respond emotionally but then almost immediately the response is part of the entire organism. Or you can suffer a physical ailment, an injury that probably wasn't caused by thought, but as soon as the injury is perceived it is now a mind-body issue. Funny you brought this up as I took a yoga class with a new guy the other night and he was going on about loving yourself etc as he was making us hold a difficult position for what seemed like forever. Just about when I was thinking "I'd wish he'd shut-up what a weirdo", it occurred to me that hey, I do need to love myself. Because we are integrated beings and you can't progress with self-judgement and self-loathing. But I still wanted him to shut-up.Oh, to respond to the other stuff yes I had a horrid virus before my symptoms came on and I had been under a lot of stress prior to it. But my neuro said it was common that bcfs/bfs follows some rather extreme stress on the person. We used to joke about my switches being fried.