Living with BFS for Years

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NinaClafinfot

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I really hate that after over a year into this bfs thing that I still get freak out days. I can go 4 or 5 days and do really well with not obsessing over my annyoing symptoms but then one day it just really gets to me and I end up frustrated and scared again. Scared that it's not just bfs. I was wondering if there are any of you out there that have had this for 3-5 years and are still okay. I mean other than the same symptoms that are related to bfs. It's my left arm that gives me the most trouble. I mean I still get the body wide twitching but I have pain in my left shoulder area, and in my hand I have some mild pain that feels like it wants to cramp but does not. And then there is the hand shaking and it seems like the top of my arm shakes as well all though that is not as noticeable and feels more internal. Does anyone ever feel their heart beating? I have that along with throbbing in both hands and head. I am currently being treated for anxiety by a naturopathic doctor and she has me on some homeopathic meds and while the anxiety has reduced...like I said I still get freak out days. I went to the dr. today because of my arm bothering me and my doctor just laughed it off and said she has no idea what is wrong with me ( I was not given the bfs diagnosis by her and she did not seem to know much about it) since I have so many odd symptoms. She referred me to a physical therapist type person to deal with my arm issues but I don't want to go to yet another doctor who is not going to do anything but cost me money. She said I just have to live with these annoying symptoms and I should just try to ignore them if they are not debilitating. Which they physically are not but mentally they are. I know Parkinson's is not a big concern for the majority of the people here but I still obsess about it and look at the young onset parkinsons forums and feel like I am just like all the people there that were told it was just anxiety and then were later told it was PD. How do you, that have gotten over this, get over it? How do you accept it's just bfs. Could pain in my arm and hands and a slight rest tremor really be bfs? Could pain in my calves just be bfs? Has anyone on this site ever progressed to Parkinsons, or you know what? Thanks in advance for any responses. Those are greatly appreciated.
 
Wow! Your symptoms sound so similar to mine. I have frequent pain in my hands, especially my left. I have had tendinitis (self-dx) in my left elbow since December. That arm has a good deal of pain. For a very long time (maybe a few years) I have had a tremor in my hands (again, the left more than right.) That tremor seems more pronounced to me lately and I get a lot of twitching in that hand. It's a real hot-spot lately.I tell you all this to hopefully offer you some reassurance that your symptoms and resulting anxiety are not abnormal. I have been worried about these exact symptoms lately, but am very much reassured by the fact that the disease I fear most is a disease of weakness, not tremors. As for PD, I have had a clean MRI and neuro exam. She didn't seem concerned about PD at all. If your docs aren't concerned, you shouldn't be either. Take care!
 
Oh--and there are quite a few "old-timers" on the board who have had BFS for more than 3 years. None have developed anything sinister.
 
It does help to know there is someone out there who knows what I am talking about. Not that I like that you are experiencing something similar to me but that I am not alone. Thanks for your response.
 
Hi MonicaI found it so refreshing to read your post because it is nice to know that I am not alone in having 'freak out days'. I feel so stupid and guilty whenever I have a 'freak out day' as you put it because I have had symptoms for 18 months now and so you'd think I'd know better by now that the fact that I am still here to tell the tale means that there is no reason for me to be scared anymore. That said I am largely over the anxiety that accompanied my twitching, although it took the best part of a year to master the anxiety. But like you I still have days here and there when I feel worried about a sinister diagnosis (ALS in my case, not PD as in yours). I think the nature of health anxiety is that we are never cured of it but it just goes into remission, i.e. just as it remits in can relapse too. So I would not be too perturbed by your relpases of anxiety - I bet that you are just like me in that the level of anxiety at this point (compared to the first few weeks) is much milder than it used to be and the anxiety melts away quicker than it used to. I honestly don't think that you have PD by the way. As a doctor myself, I find it hard to imagine that this diagnosis could be mislabelled as BFS after the length of time that you have had symptoms. But then again, I have had twitching for 18 months and so I have no logical reaon to worry about ALS, so goodness knows why I still do worry sometimes.A bit like you, it is no longer the twitching that scares me so much, but rather the other symptoms. In my case, it a weird stiffness in my R lower leg, which feels like it is awkward/ weak and as if I am limping because the foot doesn't work properly. But I have had this symptom for months now and when I catch a glimpse of myself walking past a shop window, there is no limp, and I jog/ waslk several kilometres several times a week so I guess I am just being really stupid worrying about this.Anyway, hang in there - I am sure that you will be fine. And rest assured that you are not a sole 'freak out day person'!RegardsSimon
 
It is refreshing to know others out there know what I am talking about and don't just think I am crazy! Sounds like worry and anxiety are a disease too. I like how you sait it can go into remission. Makes sense. Thanks for your response.
 
Hi Monica,I'm an "oldtimer". If you do a search you can read all about my bad period back in 2004. I had many of your symptoms and was convinced I had something sinister. Almost 6 years later, I'm fine and you'll be fine too! I had a few "relapses" back then, but my fears faded once I realized that things weren't getting worse and actually got better. It took about a year for my fears to fade. I kinda wish I didn't expend so much energy stressing about it, but hindsight is 20/20 and it's hard to be calm when you're right in the middle of it. I don't know if I have BFS, but anxiety certainly made my symptoms worse. I had chronic stress/anxiety for a long time, for various reasons back then and after awhile it starts to wear you down and cause (or make worse) physical symptoms. Then those symptoms make your anxiety even worse because of fear of some disease. It took time, support, therapy, meds to get through it. In fact, I'm going through a stressful period again in my life and the twitching is flaring up a little.You'll be OK!Take care,Mike
 
Hi Monica, yep most of what you describe I have had/having off and on. I still feel general OK, I can function, do what I always can do.....so...I dont get worried about all this stuff. I have good and bad days..but a lot of the time that is perspective. To worry or hyper-examine every little thing , does not achieve anything, other than more stress and worry which just makes things worse.Try and move the focus of attention ( perhaps through distraction??) and try and enjoy life....it is too short!cheersRodgerPS you can only control what you can control!
 
I have or have had most everything you mentioned. My left arm has hurt for months. My wrist and elbow and the bottom muscle in my forearm hurt when I do certain motions. I was referred to a rheumatologist and she told me my joints were fine and healthy. Have you had bloodwork for auto immune antibodies. Mine were elevated and I honestly think that is the root of my problem. The pain in your hands could also be carpal tunnel. This can be dx'd by getting a nerve conduction test. Hope this helps.
 
Hi Monica, I went through my "dark period" in early 2007 and everything is fine, so I'm three years out and nothing "worse" has happened. I just came back to the board today after not even looking at it for almost a year, and it was so helpful to me "back then" that I thought I'd respond.Health anxiety is tough. But I think we have to take this thing - life - one day at a time. Stuff happens, and someday (hopefully when we are all old and gray) we know that it *will* be something, and that knowledge is what keeps us hypervigilant. But, today is not that day. We want guarantees but there are no guarantees - except that, yes, someday we will all die. Of that we can be sure. But until then, we have many good days that we shouldn't waste on worry.At one point about 8 or 9 months after this started for me I began having PD worries, after several months of improvement. I finally just sort of had to think, well, what if I had been diagnosed with something awful? What would I do? I realized that I would GO AHEAD AND LIVE THE REST OF MY LIFE!Pretend that the bad diagnosis has already happened. In the sense that we are mortal, it actually has. We all have a limited amount of time - hopefully still quite a bit of time, but limited nonetheless. Time to get busy doing whatever it is you're going to do with your life!In Fall '08 I went back to school, and in eight weeks at the ripe old age of 47 I hope/plan/intend to finally graduate from college. Naturally I'm a worrier (I'm here, right?) and worry that for some reason it won't happen, or that something bad will happen to "offset" the good thing happening, but all I can do is keep moving forward and keep trying. I have control over some things but have no control over many things, and there's no point in abandoning what I can control because of fear of the unknown. And, things are going to happen regardless. In January I tore a ligament in my knee and I had surgery last month to repair it. That injury came out of the blue and all I can do is adapt and deal with it.So, hang in there. I would say "it will all be all right," but ultimately, yeah, the sun will explode and swallow our planet, so that won't be so great. But today is a good day; make it the best day you can.PS Yes I can feel my heart beating. At one point I mentioned this to my M.D. and she was surprised, but yes, at any given point I can take (count) my pulse just by sitting quietly and counting heartbeats.
 

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