Six Months into BFS: A Struggle

Okay, I'm six months into my BFS ride and it really sucks. I guess it could be worse, but I feel like I've lost control of my body. I hate it. I've had one EMG that came back with a Carpal Tunnel diagnosis. My PCP diagnosed me with CT and Fibro. I'm on more meds than I've ever been on in my entire life. My whole body hurts all the time, especially my right hand and right shoulder. Most of my twitching has died down but sticks to my right side. My right hand is always swollen and the anti-inflammatory meds do nothing to help it. So here are my questions...1. Have any of you been diagnosed with Fibromyalgia or Carpal Tunnel?2. Does anyone have problems with one side, more so than the other?3. At six months should I let this fear go and how do I do it?4. I have no weakness, well I think I do but clinically I don't, in my hand but it is difficult for me to do things with my right hand, is that normal for Carpal Tunnel?5. I have a lot of twitches in my right thumb and palm after I open something, sound normal?I've had random twitches for as long as I can remember, tinnitus, roving pains, tendonitis in my knees, shoulder pain for about a year, and somehow in my mind this is all because of ALS. I have tried so hard to let it go. I even turned down another EMG! The doctor said it would be pointless anyway because my first EMG showed nothing but a neuropathy, Carpal Tunnel. I guess I'm just afraid and I need to vent. It's so hard when I try to explain this stuff to my family because they just don't get it. I want to be normal again and not have this on my mind day and night. Every waking moment is full of fear and I'm so tired of it. I'm 24, a single mom, and I have a beautiful three year old daughter that is deprived of the attention she deserves because I constantly obsess and strength test. Please just take a moment if you have the time to answer my questions and offer your advice. I'm open to just about anything at this point. Any help is greatly appreciated. Thank you.

What I would say is ask yourself..."in your heart of hearts do you really, really think there is something seriously wrong with you"? I think many of us have analyzed individual symptoms and convinced ourselves that we had the start of something bad. BUT if we force ourselves to take that giant step backwards and review ourselves as a whole, we would say yes, I have this and that, but NOT the thing that really point to something that is life threatening (clinical weakness). Just keep swimming (reference to Dory). Vicki

Hicarpal tunnel syndrome practically takes a lot of time to restore back to more or less normal operation. My sister in law had it and it took her few month just to feel 'a bit better'. it is normal in CT to have twitching, swelling, pains, difficulties with handwork but if that gets worse you must tell a doctor because it means the inflammation process is badly controlled. For some people only surgery is a way then. Yes in BFS and BFS-related conditions it is normal to have unilateral preferernce. I have most of *beep* at the left side for example.should you have ALS (unfrequent case at 24 anyway), in one year you might be a real wreck with many atrophies and practically paralysed.Stress of being single mom is big enough to aggravate your condition. Do you have somebody to help you at least with home tasks? you must spare your hand for quite a time, wear tight bandage or even longete for immobilization (depends on severity of CT), you may need physiotherapy (it could be warming procedures, shockwave procedures, massage), and also you may need to treat your mood disorder (6 month is enough to make one)...With sympathies,Yulia

I thought I had carpel tunnel a few years ago. I'm an engineer and I type on a computer A LOT. It made sense that I'd start getting carpel tunnel. Low and behold I found out from my chiropractor that I didn't have carpel tunnel at all. It was actually a slight misalignment of my spine, which was ever so slightly pinching the nerve that went out to my wrists. Because the nerve was already being pinched upstream, it didn't take a whole lot to make my fingers go tingly like you would expect with carpel tunnel. One adjustment and I felt better immediately. I'd be willing to bet that a lot of people get misdiagnosed with carpel tunnel by doctors who really should refer you to a chiropractor first.Regarding the fear. YES, it is always the right move to get over your fears, whether you be 6 months into this or 6 minutes. Fear is a natural response to some unknown thing we percieve to be threatening. Once an assessment of the situation has been made and you have awareness to the threat, the fear should no longer be necessary, yet many of us hang on to this. I'm a fan of meditation, but hypnosis works too. Go to a library and pick out some books on overcoming fear that resonate with you. Take an active role in trying to overcome your fear and stick with it. YOu will find a way and make it work for you if you are determined. I can't tell you how rewarding it is to be able to put your fears in their proper place.

1. Have any of you been diagnosed with Fibromyalgia or Carpal Tunnel?No, they suspected CT, had an EMG done for Carpal Tunnel and results came back okay. As for Fibro, my doctor told me my symptoms could be related to Fibromyalgia but that it's very difficult to diagnose. All tests/bloodwork/MRI etc... came back fine (for which I'm very thankful) so I was diagnosed that it's "likely" benign. My neuro suggested one more test to check for TOS (Toracic Outlet Syndrome) but I declined because I'm done with it. Although I still have flare-ups, my symptoms have reduced and I found relief in other therapies like accupuncture/manual therapy/dry-needling/meditation/relaxation. 2. Does anyone have problems with one side, more so than the other?I had severe issues with both arms but there were weeks that symptoms were more present at one side. There are many people here that have more problems on one side.3. At six months should I let this fear go and how do I do it?This board is here to help and support you but in the end you have to deal with this yourself. But that seems to be the hardest part for all of us. I've been there too. My advise: trust your doctor(s), stay positive, leave the fear behind and enjoy life and your daughter. Life is already too short so don't waste it with fearing.4. I have no weakness, well I think I do but clinically I don't, in my hand but it is difficult for me to do things with my right hand, is that normal for Carpal Tunnel?That's completely normal, I have a relative who was diagnosed with Carpal Tunnel, she couldn't write a letter or open a bottle. Wearing arm braces and acupuncture did help reduce her symptoms a lot.5. I have a lot of twitches in my right thumb and palm after I open something, sound normal?For us twitchers it is normal to have twitches in muscles after the muscle is used.

Thank you all so much for your responses! I really don't know what to do sometimes. I keep reminding myself that I have had this shoulder pain for awhile now. I have scoliosis, diagnosed with it during a routine school exam in the third grade, so my posture has always been horrible. I was told a year ago that I had a pinched nerve in my shoulder. Despite knowing all this I am somehow able to twist it all into anything except for what it really is. I think the problem is that I've read too much. I remember almost everything that I've ever read. So I think I will give this hypnosis thing a try and I will keep on living like I should and enjoying time with my little girl!

The best thing I did for myself in my BFS experience is to stop Googling symptoms. Within a week my symptoms decreased significantly! Focus on all the good things in your life. Remind yourself to be grateful often and plan lots of fun things to keep your mind occupied with good things. It will get better.xo Wendy

You have a medical condition that is REAL and UNPLEASANT and DIAGNOSED. Please don't add to your problems by imagining this is anything other than exactly that.It makes as much sense to worry about ALS as it does to worry about nuclear war, an asteroid landing on your head or a new ice age.Focus on what is real and deal with that. As a father of a child a few years older than yours I can say that I wouldn't want to waste a single day missing out on that very special time.Good luck.

I think what it boils down to is a lack of understanding. I've always been a little OCD about learning. If something is important to me then I want to study it and understand it in every aspect. So being told that I have Carpal Tunnel, Fibromyalgia, BFS, a pinched nerve in the shoulder, and scoliosis is really hard for me, mostly because I don't/can't believe it. The past two years of my life have been spent behind a computer for work, school, writing, and more recently. researching MND. I never considered that I might be impinging a nerve by aggravating poor posture. I hear other people say that their shoulder constantly hurts, like mine, and I'm able to tell them that they just need a massage or a chiropractor, but my shoulder is "weakening". I stare at my fingers for long periods of time and stretch them and test them because I'm so afraid when I have a moment where I can't open a jar or I drop my keys, completely forgetting the hundred of times that both of those things have happened over the years. I just keep thinking, I'm only 24. I shouldn't hurt this bad. I shouldn't feel like this. I shouldn't twitch and I shouldn't ache all the time. I shouldn't have Carpal Tunnel or Fibromyalgia or BFS. I had no idea what any of those things were less than a year ago. And the way that my brain works makes it so *beep* hard to believe that those simple manageable things are really all that's wrong with me. Even without looking anything up, I still remember all the stories that I read and I constantly compare myself to them. It's like I'm waiting for a death sentence and deep down I know it's never going to come, but I wait anyway. When I go out and spend time with my friends and family, when I go out on a date, when I'm genuinely having a good time and not dwelling on any of it, I feel no pain at all, no perceived weakness, no twitches. In fact I haven't twitched at all today and for some reason I think that's a bad thing. I know I need to seek counseling or something and I'm going to. Just need to ask questions and talk to people who know what I'm going through. So thank you all again!

Based on what you've told us about your nerve in your shoulder and the scoliosis it wouldn't be a bad idea to see a chiropractor if you haven't already. If you can, try to find one that does acupuncture as well.

Eh well, why not? I am old scoliotic lady (diagnosed at 7 yo) and believe me, chronic muscle pain was my constant issue for all my life. Distorted spine rotates also around the vertical axle as you should know, so practically in really bad scoliosis people can have neural damages and even paralyses at young age. I personally have seen young lady with awful scoliosis, she had significant foot drop, limping etc. But she had a hutchback really. So mild scoliosis could end up in pinched nerves. Your generation had much more chances for carpal tunnes syndrom because you type from the age of 6 maybe unlike us, 40+. But it looks like I am starting to have it too in my 43 after 3-4 years of intensive typing. Fibromyalgia is a condition you might have from the bitrhday really, it just comes worse under stress. I am sking almost all of newcomers if they are hypermobile (too flexy in joints), so if you are - it might be a good plus for benign nature of your symptomes and for the ease of having CT in young age etc.