Struggling To Accept Chronic Symptoms

[Sarah]

Now that I am exactly 4 months into this I honestly have to say - it is not getting better at all.Sure, I am not the nervous wreck I was when this first started but I do have a very hard time accepting, that it may last years or maybe forever. The thought gets me really depressed. It´s interesting to see, how much these symptoms have become a part of my life already, though. Not that I ever forget about them, even at times when I´m really busy, there is always the knowledge in the back of my head that something is not right here. I´m struggling every day with new sensory symptoms, new hotspots and yes, still some fear. Not even about MND but how can all this burning, twitching, buzzing, etc be "benign?" Or lets just say "normal"? How can I accept these aches and pain as part of my life? My therapist asked me the other day" when was the last time you relaxed?" I honestly had to say -I can´t remember. Relaxing used to mean just sitting there, reading a book or lying on the couch, not doing anything. Relaxing with BFS means, - feeling your twitches even more. And no, I have not had good days in 4 months. I´ve had Ok days and bad days. I´m having another appointment with Neuro Nr 3 next week. And the closer the appointment - the more I panic. Well, as you can see, I´m a little lost and scared right now. Just wanted to get this off my chest. Thanks for your support so far. I really don´t know what I would do without this great website.

 

[SparkySunshine97]

Hi Michacar,I'm learning all the time about BFS, it is a bit of a *beep*, but we all learn that worry and anxiety is it's oxygen!!! The more you deny it that anxiety it will settle down. As you can see from my posts that even with a clean EMG (and that's after a year of on/off twitching) I'm still getting your symptoms. Twitching mainly calfs, but some in my thighs, into my stomach, arms, face cheek and one even popped up behind my left ear. Yes I have buzzing occasionally and also a lot of pain to the front of my calfs but I have started to accept that this is an inconvenience not a death sentence. I get most of my symptoms when sitting (sure there has to be a link to my back!!). So my relaxation is to get my walking boots on, get in the countryside, fresh air and take in the beauty of the world!! It really relax's me and helps me sleep at night. ) Some symptoms will always drive irrational thought, but please (I've posted this a number of times since) listen to the words of my Neuro " In the 30 years I have practiced as a Neurologist I have seen thousands of people in all that time only one person ever presented fasics before getting ***. But even then that person had complications. He has seen 100's of his own profession who come to him with fears just like us and he sends them away with the same messages.They are benign, they are inconvenient, they are sometimes wearing mentally, but they are benign. Hope brings you some comfort.Take care.

 

[JohnnyRocket]

I understand your situation and it was very hard for me to come to terms with these symptoms as being benign. Until you fully accept it for what it is, then it will be very difficult to relax and enjoy life. It did take me a while to accept it (more than 4 months) so I think things will get better for you. Over time you will see that things AREN'T getting worse and that the twitches, cramps, pains, pins/needles, etc. are just there to annoy you and present nothing sinister. Yeah, I get a bit of anxiety every time I "enjoy" a new hotspot, but hey, it's 5 years later, I'm still twitching, and these symptoms are on the bottom of my list for worries!

 

[seadragonsovereign]

I hear those thoughts I sympathize with you completely. Tough to get past those first months (I am proudly in month 22!), but you will and the reasons for your current anxiety WILL fade. For me, it is now more of a daily (well more like minute-ly) aggravation. Some days these twitches (jerks, trembles, etc) drive me crazy - I just wish I had one day of peace! So I still have anxiety for this reason, but the FEAR induced anxieties are essentially gone. So hang in there and plow through the bad days. Brighter days ahead.

 

[AllGoodHere]

Well none of us like it - unless there are a few masochists out there Coming to terms does take a while and even after years when you have a flare up the downturn of emotions can come back with it. I am much much better than I was a year or 2 ago but still have recurrence and it still gets to me when that happens - it gets depressing when I have to cut down on activities I like or I am struggling with pain. At least now I know it will ease up and sometimes for long periods. I used to have to constantly remind myself that I should be grateful for what I have (my general good health) and what I don't (a progressive disease) and sometimes that actually worked for me. You must focus on the positive or it can get to you - it takes some self-discipline but is worth it and I found that the sense of well-being from the positive focus made life overall better and more enjoyable. Good luck.

 

[ionyZarrion]

All I can do is echo what everyone else has already said and tell u to hang in there.I can relate because all though im usually super comfortable in the benign nature of my twitchiness...I have been falling into the old patterns of fear over this last week and everything I was sure about seems flimsy...I think thats what its all about for the first year...ok days and bad days...

 

[bfhopeful2]

I would agree that first 6 months is a beeeyeitch. The main thing is this. The more you concentrate on it the worse it gets. Break the cycle if you can. I couldn't do it until enough time passed to prove it was benign. Unfortunately most if us here have had to hit that mark. Once you have it in ur head that nothing crazy is happening you relax more and the twitching reduces. I hope you get there soon, don't let it get you for longer then needed.

 

[AussieSurvivor]

Michacar....5 things1. Read Erikas post again!2. time will heal, without a doubt3. it will get better-(trust me I have been where you are now)4.Anxiety fuels it, you need to control that5. Remove the focus-distract yourself6. it is nothing nasty.take care RodgerPS- nice avatar

 

[julian965]

hi micacar,i know exactly what you are feeling. After 16 months, i am still twitiching,( mostly calves) and am losing hope that it will ever go away. like others here, the best advice I can give is to downgrade their importance in your life. Once you decide you are going to do everything you normally do in spite of the twitching and (as another poster said) thank heavens it is benign, then you can lead a pretty normal life. I really hated the months of real living that the twitching "stole" from me when I let it be the background of my life and fears. I know some scary and hard times will come into everyone's life at one point or another, but I resent wasting any precious time that we should be enjoying and instead worry about something that is mostly just annoying and quite simply NOT life threatening! I do believe it is a real disorder and not due to anxiety. Many of us are rightly anxious about it a (because it is SO weird), but I believe it is akin to one of the poorly understood nerve disorders like RLS or Benign Essential Tremor that are quite annoying to the sufferers but there has been little done in research or medicine to alieve their symptoms. I think accepting it as one of those things is the first step to living the best life you can in spite of it. Others have so much more to bear when symptoms of more serious neruo diseases cause them real disability. I sometimes feel guilty complaining about bfs. Only those here can understand what we all go through and lend an ear and some comfort to our fellow sufferers!Hope you start to have more "OK" days than bad days!

 

[BarbiePetals]

It does get better. I promise. I never thought I would comes to terms with this but after almost 2 years of twitching I finally feel at peace with this. You will learn to accept it also.

 

[KirayEmmayHaleyyReag]

Hi Micacar,I dealt with some very similar concerns years and years ago at the height of my BFS-related problems. I am a physicist, and so I have a very scientific view of the natural world. One of the things that bothered me most about my twitches was that I never could find a satisfactory explanation for why my muscles twitched. In my world view, everything has to have a cause, and the only cause I could think of for my twitches was ALS. Two things helped me get beyond this. First, I really took BFS seriously. If my brain could accept ALS as a cause of twitching, why couldn't it accept BFS as the cause? Scientists know more details about the mechanism behind ALS only because they have spent so long studying it. That doesn't mean it is a more likely cause than BFS. In fact, I bet BFS is much much more common than ALS, which means that if someone is twitching, it is most likely they have BFS. I learned to be content with the sentence, "my muscles twitch because I have BFS."The other thing that helped me was to try to think of something else our bodies do that we don't always have an explanation for. The two things I came up with were hiccups and itches. I bet there are people in the world who get the hiccups all the time. And it can be very distracting and very annoying and sometimes even painful. But there isn't some horrible disease associated with hiccups, so no one would freak out if they got the hiccups all the time. So I tried to think of my muscle twitches like hiccups. And it's kind of the same with itching. Sometimes my nose itches incessantly. It's not when I'm sick, I don't have allergies, and there never seems to be a reason why my nose will just start itching. But I don't sit there puzzling over it, like "why is my nose itching? What underlying cause could there possibly be for this constant, nonstop totally annoying itching?" I don't really care why my nose itches. I just scratch it and move on with my life. Another way itching is like BFS is that if you start focusing on itching, I bet you will notice tons of unexplained itches all over your body all the time. Sometimes at night, I would feel so itchy that I would have trouble falling asleep (but the whole reason I was focusing on itching was to deal with my twitching, so I didn't mind). But again, there is no scary disease associated with itching, so there isn't that anxiety that grapepie up everytime I have to scratch my nose.Good luck. As impossible as it seems, it will get better.-Erika

 

[Sarah]

I just re-read everybodys post again. Great input. Thanks so much.