18 Month BFS: Pain & Exercise Tolerance

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simonw00

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Hi allI am officially an old timer - 18 months or more for me. Twitching was my only initial symptom although I have since gone on to get an array of other things especially a stiff calf. Anyway, others have written about how their BFS is associated with muscle pain and exercise intolerance. I felt lucky that this didn't apply to me - I can jog (albeit slowly) for 30 mins and I walk briskly up a steep hill several times per week. However I played competitive soccer for the first time in over 10 years last weekend for a 'masters team' - aged 45 and over. I am 45 myself and so was the youngest player on the pitch and thought that the regular exercise that I do would stand me in good stead as regards fitness. I was surprised that I could only manage half a game due to muscle pain in my legs, not due to physical exhaustion. I assumed that this is because I was not 'match fit' but I now wonder if it BFS-induced exercise intolerance. We all expect some degree of muscle pain after unaccustomed new exercise - accumulation of lactic acid in the muscles and all that - so I wasn't surprised that I could hardly walk the day after the game but what surprises me is that 5 days later I am still so incredibly sore and achey in my thigh muscles. Again, I assume this is part of BFS. I also have this horrid calf pain which is a near-cramp mixed with a sharp twinge of pain and does not feel like 'sore muscles'.So my questions to other people with muscle pain and exercise intolerance are;1. Does my description sound familiar?2. Did your exercise-induced symptoms appear later i.e. > 1 year after the twitching started?3. Any suggestions other than stretching/ warming up, massage, warm baths...? I've tried magnesium and carnitine with no luck and also CoEnzyme Q10.PS Despite the severe muscle pain, I am going to carry on playing soccer each week - it was great fun!Thanks for your adviceRegardsSimon
 
I get the same...i notice the better shape I'm in the longer it takes me to get sore...but then again I can get muscle pain from shagging the old lady :) I'm in good shape too....ib profin 800mg three times daily...write yourself a script.
 
Cheers BFS Hopeful - you are a lucky man that conjugal relations with your wife last long enough to make your muscles sore!Simon
 
Football (soccer) is so much great fun and the best medicine against any worries, whatsoever. When you could only stand out in half a game it is mainly becourse of three things as I see it:1) you jog for 30 minutes regularly. Its only half a game. Try to jog for 1 hour and see the result...2) In football you use a completely different set of muscles and you use them different. Its not like jogging. 3) you are 45. Yeah, Im sorry to say it is so. But when you begin to do new sports in that age, you need some patience. It can take a while to be fit for fight and stand a full match. I always begin slooowly after an injury for example. Patience is the key-word. If you go to fast - the injuries will come or cramps... (No, not THOSE kind of cramps).And some extra advices:4) Important: Warm up: 10 minutes of light walking and running. 10 minutes of stretching the muscles. 5-10 minutes with the ball before start. Do NOT shoot the ball hard on BEFORE the warm up is finished. I guarantee that you WILL be injured - sooner or later...5) I know that each case is induvidual but my own BFS seems to lighten up somewhat during the match. I have only experienced stiffness once - but it disappeared again after 10 minutes. Despite my twitching and fear and all that, I have always and I mean always been able to play without any problems whatsoever. Even when I was certain of the opposite (the Doomed-Factor).6) Have fun! Regards
 
Simon based on the fat that you are 45 ( sorry) and haven't played any sport of this nature for 10 years! I think it is all muscle related ie ones you normally don't use, bucking up. I play competition squash regularly,I am 49 and I have BFS. I don't get this type of pain, unless I have a really hard game. And yes I still hurt up to 5 days later ( or more)-everywhere. I think you should not be reading any more into these type of things than they really are... in this case perhaps an unfit 45 year old (sorry again) that hasn't played any vigorous sport for a long time and still thinks he is twenty! As mentioned by fox you should have 'eased' into it....as I am sure you would tell your patients!cheers,keep it going!Rodger
 
I used to have very bad muscle pain. It went away after about year 3. I... forget I think I am at year 6....I still have sore calfs. But nothing that cannot be ignored.
 
I've been excercising about 2-3 times per week for about 2 years since I started the **S scare. I started cuz the main thought in my mind was to excerise and keep or increase the strength that I currently have. My theory is if I continously get stonger orat least not weaker....this will keep my mind from going crazy with anxiety over **S.So far its works for the most part. I have a total gym that I use about 30 minutes for each workout. Otherwise I try to dopushups. I'm currently thinking about joining a new gym in town.So, hopefully I dont reach any excerise intorance...that would really be bad,
 
I' have seen a very good neuro and we talked about 3/4 of an hour and she did some test and she looked to My MRI.We aggree to treat that stuff as a RLS to see (would be generalized but 80 percent in legs).So i have taken MIRAPEX (dopamine agoniste) very low dose for one week and it seems to work ...My legs are a lot better, not stressed. I did a hike and my legs hurts now as a normal person when you exercices your muscle.I have a reduction in all of those stupid feeling (tinging and more).Twitching is less but i had not a lot of this before, mainly paresthesia.I'm sitting in front of that computer since one hour and ... nothing at all at the present, no twitch, no tingling ...Anyone tried that?Bye
 
Pinprick,I was given Mirapex as a substitute for Klonopin. I took it for a day but because I did not get the instant relief that I did from Klonopin I rejected it as not helpful to me. How long did it take for you to notice improvement with the Mirapex? I am on half the dose of Klonopin I was a year ago. Half the Klonopin dose (a .5 mg pill) keeps the restless body/tension type symptoms away, although I still get random twitching and vibrating and lots of tingling all over but the these symptoms are manageable. I am glad to hear the Mirapex is working for you. Finding something that helps can feel like a small miracle.Krackersones
 
It's about 3 to 4 weeks i am using Mirapex.You have to wait before it does something.I did not had a lot of problem the first day, no "real" adverse effect.I don't know if it really work (because i did other things ...) but i am definitivelly better.This is all the stuff i did:1) No caffeine at all (drink decaffeinated coffe). No tea. No chocalate.My neuro approved that and recommanded that.After 1 month a lot better then very very slow recovery (if any) after this month. It looks that the improvement is asymptotic after one month (it is not linear).It does a lot in my case. I'm in my 3 month avoidance.2) Exercice like yoga for the spinal collumn3) Sun4) I'm using Mirapex.Note: I KNOW that the problem come from the spinal column (the neck) because i had 2 episode where i was looking down and i had tingling in my left leg and when i was looking in front of me, the tingling resolved. I could reproduce that 10 times (Lermitte sign). This problem looks mainly like a "benign" myelopathy from unknown cause (viral or mecanical). Those "guy" who have that have similar problems has we have after the initial onset that clear up in 2 weeks, i.e pain, paresthesia, cramps, spasm and so on.There is NOTHING to see on the MRI after the initial onset resolve in that case. Your left with "stupid" after effect problems.There is "may be" some "stupid" genetical predisposition (benign) ... then someting happens (virus or other) and it does 2 + 2 and the result is that "crap". Without both, nothing.The problem is that once you have it, even if it goes down with year you could do "flare up" like i did and "back again" in the nightmare, may be more parethesia than twitches like i did 3 times and i should say that i prefer twitches that paresthesia because the type of paresthesia i have hurts, it is mainly sudden pain (false cramp) that diseapears after 1 minute, sudden "electric discharge", sudden needle pocked inti bone.bye
 
Hi Simon--That sounds incredibly similar to my muscles these days. I've had twitching and all sorts of nonsense for 3.5 years, and the exercise intolerance can be really trying sometimes. The muscle pain usually shows up a few hours after I exercise but the muscle pain is INTENSE and it lasts for many more days than I would expect. You're not alone on this one!Best,Andy
 
Thanks for that Andy. Great to hear that you are doing so well and I always find it comforting to know of others with similar symptoms to me who are just getting on with their lives, as I am now able to do as well by and large (with only the odd day of irrational worry here and there!)RegardsSimon
 
When I first saw my neuro about a year ago, he gave me samples of Mirapex. I never tried them because I knew I didn't have RLS but now I am wondering if I should have given it a try. I still have the samples here. I remember my GP questioning me on why I didn't try it. Pinprick.... did you have a side effects from it?
 
Simon - Wait, you haven't played a competitive game in 10 years, just jump right in, and then wonder why you are sore for 5 days later? Under these condition it doesn't sound like something out of the ordinary to have pain for a while. Kudos for getting in there though. 1) It all sounds familiar, 2) my symptoms appeared consistently over several years in varying intensity, and 3) try anything that will increase your circulation - whatever works best for you. Range of movement exercises always worked best for me. Make them circular, for every major joint and the spine, and increase your range of movement as you go. Do ~20 minutes covering most of your muscle groups (even if you hurt). Hope this helps you. And oh, don't forget to get the book we discussed earlier on tension myositis syndrome. Let me know how it works out for you in either case.
 
Thanks AllGoodHere. Have been doing a few exercises laterly recommended by a physio and have today incorporated your suggestions into my routine. I'll let you know how I get on, as well as the TMS stuff we discussed.RegardsSimon
 

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