Seeking Reassurances From Seniors

[BailysBunniLuv]

Hi everybody.We r not getting any posts from our respected seniour members who have joined this forum at the very beginning,say around 2002/3.As every one knows bfs is a problem ,whose time is the only solution-older u becomes with it ,severity of symtoms goes on decreasing generally.Thats why some times its called WAITING PERIOD GAME.It will b of immense value therefore if we get reassurances from seniour colleagues suffering from d same.I and all new comers humbly REQUEST our respected seniour HEROES [Those joined from beginning of this board till 2007/8.Its not hard n fast any seniour 's responce will b heartly wellcomed]to spare there few precious minutes by putting there posts[how n where they r,there current views etc etc..].I am sure MAXIMUM no. of people will resond .This is just a REQUEST which is going to mean a lot to me n other newrs.I request if our moderators can help in it.Recently posted Alonzo sir's posts were really marvellous. Thanx for patient listening.Bye n take care every body............baily

 

[BarbiePetals]

Those people just don't post anymore. I guess they have moved on. However, you will see oldtimers pop in every so often to post updates. Those to me are the best kind of posts. I too wish some oldtimers would post more but I guess after so much time they have better things to do than sit on a message board.

 

[timsuprelax]

Well if you put it that way (so nice of you to ask)I dont really consider myself and oldtimer based on when i joined the board-2006 but i have had the BFS since 2003 and BFCS since 2006-I agree with all posts that stress whether you are aware of it or it is subliminal -it causes the twitching to be worse- i really havent found anything that really makes a difference with symptoms-some days are better than others-for me the happier i am the less my symptoms of aches and pain-as well - i have had many EMG's and Neuro exams-so much so they are like: "you are wasting my time" -i got that feeling at the Mayo Clinic in AZ. So yes it is something you have to live with-for me since 2003 only the ache and pain has gotten worse -but not somethng i cant deal withthe people that come on and only complain of twitching (like in the eyelid or thumb) i just know its the anxiety of going out and looking up twitching on the internet-as that is normal and we all have been there- I have noticed that the people i talked to then are not around and I like you miss our conversations and occassional sparring of jokes or tricks-I have been able to get ahold of one great past poster massagefan and she is doing well everyone else i pm'd have not responded- Anyway as always- if you are still strong and no clinical weakness as well as the longer you have the symptoms the less likely it is anything sinister-ALWAYS KEEP THAT IN MIND-twitching is normal for alot of us- like the moderators have said BFS in a nutshell is a must read and perhaps should be manditory reading before allowed to join the board as it is a great sticky-anyway like you said more oldtimers would be great to talk to i see Basso is still around and Sharon Slack once and a great while and Kit ever so not enough just to mention a fewi did notice j_sageurge-hes been around awhile and i see he still posts-always with good infowell gotta go _wishing all of you the best and ill see ya around the old twitching POST-David

 

[BailysBunniLuv]

Thanx David and Barbie for your reply.Both have given me [and to,i think other newer's]great reassurance.I Think our old seniors have not left this wonderful board and they must b around here only.I request n expect MORE to reply.Thanx in advance for ur few lines[which will mean a lot to others especially new'rs.....takecare.......baily.

 

[AllGoodHere]

Hmm I've been registered here for 2 1/2 years - is that an old-timer? (Does not include 6 month lurking period - my symptoms actually go back to ~2005). Like everything else about bfs/bcfs/pnhe the dropping off of symptoms is also very individual. After a few years most people have run the full course of what can happen as far as symptoms go (the list is endless) and usually start to calm down about it. This helps most in itself (the calming). A lot of us adapt - find our own symptom management process which is also very individual (diet, meditation, Rx drugs, psychotherapy, but also time & healing) and again with that comes not only relief of symptoms but often an ability to avoid them sometimes. For me I am experiencing now ~20% of what I was symptom-wise a few years ago. Perhaps one day I will be completely free of it but even if not, it is no longer controlling me and that is what is important.

 

[garymills]

Well, I guess I qualify as a "senior" member at this point....it is hard to believe it has been so long since I first found this site. But I'm sure what you really want to hear from me is how my sxs are, and I have to say that the twitching is just as active as ever.....I just don't care about them anymore so they have faded to the back ground of my life. Everyone here will eventually get to that point, I hope!Take care,Gary

 

[mommyLDN]

Hi Gary, thanks for poping in, LOL. What about the sensory stuff, did you ever have that?? If you did, is it better now or the same??Thanks again.Robynn )

 

[garymills]

Yes i did have a ton of sensory issues, muscle/joint pains, cramps (which I still get sometimes), exercise intolerance/extreme muscle fatigue and most other issues people here complain about going on for about the first 14-16 months solid without any real improvement. After about a 1 1/2 years, things started improving on that front and continued to get better for a couple of years until it got to the point that I only noticed the "bad" days instead of everyday struggles. Now, I have basically none of the sensory stuff, just twitching and cramping these days Through my experience, and countless interactions with people on this board, I have to say that learning to deal with the anxiety associated with our condition is the single best thing any member here can do for themselves and their health. While it will not cure bfs, dealing with the anxiety and accepting the condition as truly benign in nature, helps people to get back to living life, in as normal a way that is possible given the physical limitations we have (exercise intolerance, fatigue, etc.). Once you get to that point you can reclaim your life, one step at a time. I hope and know that all of our members here will get back to a normal, although twitchy life, in time ) .Take care,Gary

 

[BailysBunniLuv]

Thanx Garym sir,I amOKsir for ur reply.Very excellent citation by Garym sir that one should learn n accept to handle anxiety [and just ignoring bfs],go on n enjoy every second of this unpredictable life-u dont know what will happen tomarrow.Requesting MORE seniors to reply and thanx inadv............baily

 

[BailysBunniLuv]

WAITNG for more replies from seniors.115 PEOPLE gone through the thread but only few replied[made me little upset] but i won't loose hope.......waiting,waiting,waiting....................................baily

 

[katy99ykayley99y]

Hello Everyone I was going through some bookmarks to delete and save and stumbled on this site. It was my lifesaver in 2005 and for some time after that. I started twitching before that though. It all started in my feet and eventually in the leg calves almost constantly. I was twitching in my thumb pad also. I also started to notice dents in my leg. I was expecting our first grandchild and going crazy with worry about all of this. I spend hours on the internet looking up symptoms and driving myself and my family nuts. I had muscle and joint pains especially in my feet and hands. Not sure if the twitching had anything to do with it. I never went to see a neurologist because I personally didn't want a definite diagnosis. That way I still had hope even though there was much fear with it. I always checked my heel to toe and all the things we do to make ourselfes feel better. I had become a slave to this thing and one day decided I had enough. It is now almost 6 years since March 2004 and I am doing great. Babysitting our grandchildren and grateful to be healthy and alive. I still twitch off and on and still have finger pain. I have to make the choice not to dwell on it because it would be easy to do. Thank you all and I wish everyone health and peace of mind.christy

 

[mommyLDN]

Thank you so much for stoping by Christy, and so happy to hear that you are doing so well. I'm sure your words will be music to so many ears. Thanks again, and take care.Robynn )

 

[BailysBunniLuv]

Absolutely correct Robyn.Thanks for replying Christy mam.Amazing to c that u were never been to any neuro and not intrested in definitive diagnosis.I am glad to hear that ur in a sound health.Takecare...........ANYMORE replies will b heartily welcomed from SENIORS.Thanx in adv......baily.

 

[AussieSurvivor]

Great call Bailey. The only thing I would say is that all of us regardless of how long we have been visiting this board we all need support at times- whether it be from a 'newbie' or and 'old timer'. We all can contribute I would not classify anyone as 'heros' or 'senior members', we are just all people with the same BFS BS in common, some of us have just been dealing with it for a longer time than others, and some of us may 'cope' a little better than others regardless of board 'status'. Please dont feel that if you have been here for a while that you should be 'over it' and have to post to that affect.cheersRodger-just your average Joe coping with BFS......like everyone else here!

 

[RainCat]

I pop in now and then but my social life is so hectic lately

 

[twinTwosome]

I think I would qualify as a senior member since it's been almost 2 years. I have been meaning to reply to this thread, but I keep thinking "I'll do it later." That's because BFS doesn't weigh much on my mind anymore. Don't get me wrong, it crosses my mind at least daily, but it's usually a fleeting thought, not worry. I do still twitch, but only notice it when I am still. Toes and hands probably see the most action. My life is busy and happy now. It was busy and happy 2 years ago too, but I didn't notice because I was beside myself with worry. I do think the initial worry is warranted though. It is really bizarre for your entire body to break out into twitches. Initial symptoms for me were sever and widespread. Who wouldn't panic over that? Everyone in my family completely dismissed me as crazy and this board saved my sanity. This was the only place where people would take time to "listen" care and take me seriously. No, I don't come around much anymore, but I still think it's a great place. Thanks to everyone who helped me through one of the craziest, toughest periods of my adult life!Becky

 

[mommyLDN]

Thanks for stopping by Becky. Your post helped me alot in my early days here on the board, and you have always had no problem taking the time with me when I had a question about the symptoms, so thank you for being there.Take CareRobynn )

 

[BailysBunniLuv]

Thanx Rodger,Raindog and Beckey for ur replies.Raindog ur leg video is very much satisfying to so many,i really appreciated it.Requesting MORE older fellows to drop there precious few words.I hope this thread shall b a great kind of support esp. to newbies.................Thanx in adv...........baily.

 

[BailysBunniLuv]

Any more oldposter's please.........it seams max people have already posted and no more i can expect?isnt it ?I THANK all seniors who responded to this thread and provided agreat reassurance...thanx again.................takecare everyone....baily

 

[LindsayCohen7]

I've actually been meaning to log on....my twitching/cramping/weird sensation/generally feeling like crap began 5 years ago this month. I had every test under the sun, and this site was a lifesaver. My neuro said I would be fine. I actually printed out the About BFS for my Gp and she wasn't satisfied. Wanted me to have tons more tests and see more specialists. I really think she wanted an exotic case. I'm happy to say that I am FINE. I ended up cutting out gluten 1.5 years ago, and that has made such a difference. But I think BFS has different causes in different people. BTW, the gluten idea was my own - not my my GP's and not my GI doc's. You are your own best advocate! Trust your diagnosis. It's benign. Try to relax and see what makes you feel better. Most often that will just be getting your mind off your symptoms. They stink but they don't have to ruin your life. Take care everyone!