Looking for Light After a Year

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Kurilisab

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Please answer if you have any experience as far as timeline info. Almost a year here, and feel pretty much the same. Able to cope, just hoping maybe there is light at the end of the tunnel. Thanks. :D)
 
My twitching and sensory symptoms are probably about the same or slightly decreased since this all started. Hard to say because they simply don't bother me anymore and haven't for years. In fact, I would absolutely miss my twitching if it magically disappeared tomorrow. JohnnytheJet6.5 year vet
 
Great, so you think the body just adapts to it all? Sounds like a plan. Twitching honestly doesnt bother me in the slightest. The light headedness/ dizziness is what really gets me down.
 
I think my mind just adapted to it as it became a part of me. It doesn't hurt me and doesnt prevent any of my life activities, etc. so I hardly notice. It's like I breathe all day but I've been breathing for so long that I didnt notice it at all today.
 
Getting close to 5 year mark.1st year=pretty bad2nd year=periods with mild symtpoms but worsening on feet3year= very good, nearly no symptoms4year=tongue started->anxiety->widespread twitching againNow everyday its different. Some better, some worse.
 
Not a vet, per se, only 6 months here. Twitching is nearly gone. Pain has set in. I think I miss the twitching... :LOL: I hope your second year of this gives you some relief!
 
Into 3rd year now, mine has morphed a couple of times. Twitching dies down, for me seems to come back around the winter months. Started to suffer more burning and discomfort when I sit down. But as they say 'don't sit down then"Hope one day it will go, but it's not life threatening and I can put up with the nerve pain when sitting so I'm a lot better off than other people with more serious conditions.
 
Hey dudeIm not so much a veteran, but i've experienced alot in the past 14 months with bfsSymptom wise, not much has changed since the beginning, the twitching is the same, i have less of some sensory symptoms but more of some others, nothing i cant cope with thoughPsychologically though, a lot has changed and i feel thats what really matters to a certain extent. You just got to keep strong mentally and try not to fall into a ditch (like i had)... for the first months i would think about all this CONSTANTLY, i couldnt concentrate on anything but me dying! now, it just brushes past my mind a couple times a day but i usually quickly change the topic in my mind to prevent anxiety LOL I infact enjoy the twitching sometimes, i think its funny and really interesting (oh god i sound crazy :LOL: ) to watch, you really do learn to live with it, but only YOU can teach yourself how to deal with it :D)
 
Thanks for all te input guys. Well, I have managed to pass my emt-b program, passed the state test, and now have a schedule to enter the fire department. Now, If I get in, here's proof, proff that anything is just as possible post bfs. I am a HUGE hypo lol! One day at a time. We'll all be alright.
 
My timeline was something like: first occurrences to ~ 3 months: thought it would go away, that it was just some kind of reaction, etc. with twitches, vibrations but normal fixes like increased hydration and stretching did not help 3 months - 1 year: developed more problematic symptoms with more pain, sleeping problems after a very bad flu which my doc said sounded like H1N1, on-and-on huge list of inconsistent symptoms developed - GP started sending me to specialists; numerous soft tissue injuries, more sensations & muscle tension; did some therapy and meditation~1 yr- 2 yr: dx'd with BCFS, continued some therapy, more specialists, blah, bah, blah, found some online resources - pnhe website so didn't feel quite so stranged-out, came to aboutbfs in second year, meditation etc still helped, tried lots of supplements etc. Took gaba for a few months.~2-5 yr: got tired of specialists and chucked all the docs, decided to take another approach and began reading information, books, online, medical papers. Settled on just taking supplements to boost my immune system and stopped all the other stuff.~3 year on to now (~6 years): tediously worked through it all - now only occasional cramping and tightness, rare sensations, which I can easily deal with. OK for the last year or so (always knew I would be lol).For me, the worse times symptomatically were when I was most stressed and depressed from things outside of my control (family illnesses, etc). We often cannot control what happens to us, we can only control our reaction to those things. Applying this concept I was able to heal; both physically (body) and mentally (mind) which I believe cannot be separated.Nytfury - try some regular gentle neck stretches - tense neck and shoulder muscles can cause nausea and balance issues (years ago my neuro remarked on the large amount of receptors for balance etc affected by neck tension so its not just a guess).
 
I joined AboutBFS.com to find out about this very question. My answer is different from most people's. Mine BFS/PNH (presumptive diagnosis) has gotten steadily worse during the almost 12 years since it all started. More symptoms, more often, and at greater intensity. I realize this is not the experience of most people here, my PCP thinks more than just BFS/PNH is going on with me; autoimmune is what he's tracking and ruling in/out these days.So based on my experience, and what I've read here, BFS gets better if it's only BFS. If the BFS is secondary to or accompanied by something else, then that something else may affect the progress of BFS. I'm still trying to find research, other than the Mayo Clinic paper cited on one of the info pages here, about the natural history of BFS/PNH. Such info would be very helpful to have.
 
Aoi - Don't think that is an accurate/over-riding "experience of most people here". A lot of people just learn to cope with it and reach a stasis for the most part but their symptoms persist, some of us find under-lying conditions and once those are taken care of, are able to heal. You run the risk, IMO, of over-simplifying and not seeing that BFS/BCFS is a catch-all DX with multiple causes. The one thing we all have in common is that something, whether it is an immune response, lyme disease, thyroid imbalance, physical/mental stress/drug -induced, (on-and-on-and-on whatever the cause), has affected our nervous systems in such a way that we have similar symptoms. None of this is written in stone anywhere; it's like saying a headache is caused by lack of sleep and ignoring eye strain, stress, tight muscles, jaw clenching, an auto accident, lack of hydration, etc., etc. It doesn't make the headache any better or worse - it stills hurts regardless of the cause, can be debilitating or slight, and you may or may not be able to get rid of it. I'm sure others have something to say about this - or maybe can come up with a better analogy. :)
 
Still waiting for some results. I'll keep you posted. On a good note, the dizziness is almost gone. Now, just a strange very low pressure in my head lol, like as if my head muscles were working out. Have a bit of brain fog now, but no biggie. Muscle cramps and twitching still going crazy lol but I can deal. Eyes still twitching like crazy too everytime I sneeze or yawn. Doing ok though, still hoping for the best. Thanks.
 

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