This is ruining my daily life

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This is ruining my daily life

Postby Squidge on August 28th, 2014, 2:55 am

Hi all
I'm quite new to twitching....eight weeks and counting . I've had neuro clinical and been diagnosed with bcfs. Neuro said I don't need an emg. He said he knows this would be normal so waste of time. Anyhow, I am now in a sorry state with constant twitching and leg cramping, burning, tingling, prickling and also twitching in arms, abdo, neck, back and even more personal places on occasions. I find patterns to this throughout the day. It is worse when sitting, lying in bed, and better when moving .i get stiff legs when I'm still and can only sleep on my back with a pillow under my legs to ease things. Now I'm gonna tell you something very strange..if I have a glass of wine or two, which I do every evening, my symptoms virtually disappear and legs feel perfect. This happens every day.. Same thing.
I am at the point now where I am paranoid/neurotic/sad/ terrified and have lost my enthusiasm to do anything. My daughter is over from Canada for two weeks (I live in the Uk) and I feel that this affliction has ruined her stay as I am so preoccupied with this 'thing'. I am constantly checking for weakness, atrophy etc. I am on the net on boards such as this, which has also become an obsession of mine to keep reading bulletin boards, which my family keep telling me to stop doing as I usually find some negative posts or articles to ruin my day. I am now in a very, very dark place mentally and I feel the future is bleak. I only get solace in a glass of red wine and a hug and reassurance from my family . I've gone from a happy to be alive fun loving person to a physical wreck. I keep telling everyone what a sad pathetic woman I am and they all kinda understand what I'm going through. I hate to keep seeing that awful three letter word plastered everywhere on the internet when you type in these symptoms and I have come to the conclusion that these bulletin boards, while supportive and helpful on the whole, may be doing us all more harm than good. However, I'm now hooked like the rest of you. Wouldn't it be wonderful if everybody stopped mentioning the dreaded beast and started posting positives to help us all feel better. I bet a lot of our symptoms would disappear if that were the case. This syndrome that we all have is an anxiety/mental issue as much as a physical one I'm sure and, mentally at the moment,I feel worse than I've ever felt in my life. I am considering seeing a counsellor or psychiatrist..... It's got that bad.

Thanks for reading and I do hope you all find peace of mind and that we all have happier times ahead. At least we all have something in common and despite what I said about forums doing more harm than good... It is nice to know that there are fellow twitchers in the world apart from me
Best wishes and thanks to all of you that have made me feel a little better with your reassuring posts
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Re: This is ruining my daily life

Postby Andreas on August 28th, 2014, 5:59 am

Hi,

I complete understand how you are feeling! The clinical exam is the most important thing to rule out the bad desease!
And your exam was absolutely ok so there is no need for an EMG. If your doctor had found anything abnormal than he would not give you the diagnose of BCFS! Doctors make only a diagnose if they are completely sure.

If it would give you a peace of mind so tell your doctor that an EMG would help you to accept the Diagnose.
But I can say that after a few weeks you need an new EMG again to calm down......and after a few weeks another one.....and so on.

So try to accept BCFS as hard as it is. I know how hard that this can be.

When a glass of wine makes you feel much better, a Benzo could work for you because they are working on the same
GABA-System in your brain like alcohol do. I would give it a try so speak with your doctor about it.

I am also at the oppinion that BFS and BCFS is not only caused by our anxiety but feeds it!
And the daily checking routines of your strength is more bad than good for your body. Exercices makes BFS more worst for the most persons.
So try to reduce the test to a weekly routine, that is enough and you symptoms may go better.

And time is your friend! I guarantee you that after a few months it will be easier to cooperate with you symptoms.
The first time is extremely hard but you will pass it!

Don´t give up my friend!!!

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Re: This is ruining my daily life

Postby Squidge on August 28th, 2014, 7:01 am

Hi Andreas
Thank you for your nice post..you are very kind. I have a GP appt this afternoon to ask for help with my anxiety issues....maybe this will help with the other stuff I'm suffering at the moment. I feel my right arm is acting strangely with different sensations in it and I also have numbness and tingling in my toes. I feel that I cannot sit or sleep without discomfort. Maybe Benzos will help but have to say the wine is more enjoyable!
The most distressing part of this is that I feel so alone with my thoughts and symptoms and nobody really understands what I'm going through except maybe......people on this forum. I'm thankful for that
Thanks again Andreas - I hope you are in control of your symptoms and anxiety.
Best wishes and good health
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Re: This is ruining my daily life

Postby leaflea on August 28th, 2014, 9:45 am

Hi Squidge, I totally understand. I wonder if we should all take a break and come back on October first and update how we are feeling after not reading or contributing to the boards. I support your seeing a psychologist (CBT) and a psychiatrist. I started in January and the most helpful thing he has done (he has had many patients with bfs and suspect he may have had it himself because he is soooo familiar with everything) is to keep me accountable to not run to my doctor for anything without running it by him first. He also prescribed staying off the internet totally for this thing, and I have only been partially compliant (going only to this board and the FB page which are also to be off limits. He also prescribed a worry period where I jot a note of all my concerns and use 20-30 minutes per day to focus on the problems and engage in some problem solving. I also have not been compliant with that. I vow to start over again today. If anyone is in agreement, I will see you on October first. In the meantime, the biggest leap of improvement came after reading "A New Earth" by Eckart Tolle. I challenge everyone to read it...it is a bit of an odd book, but if you can get into it, it is helpful. It is about acceptance and surrender, to stop fighting and stop the quest for answers. See you all on October 1, 2014. My therapist points out ALS is not a disease with great benefti to "catch early" like other diseases we might fear, so there is nothing to lose. Peace Out.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: This is ruining my daily life

Postby Pascal35 on August 28th, 2014, 4:50 pm

Hi Squidge,

Keep enjoying the red wine... as long as you keep it in normal quantities!
Read about the French paradox --- Red wine is great. I am Greek so i have a clear view!

I just had a few myself now so i feel much better and more relaxed... No more weakness, twitches, stiffness etc...
It shows that is purely stress.
Relax, think positive, make some exercise like running in a park (there are a lot in UK) and don't pay attention to those small issues that are ruining your life... If you ignore them they will ignore you. Its not easy but its only you who can end this.
Dont take Benzos. Tried to avoid them. I m on Benzos for a few months and i really suffer when i try to quit for a day or so. I tried today not to take and then during the afternoon i felt weakness on my left arm, panic attack right away so i took a Benzo again...
Anyway - All the best!
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Re: This is ruining my daily life

Postby Crampydr on August 30th, 2014, 3:10 am

Hi squidge.

I'm sorry your are going through this. I think we have really similar physical and mental symptoms.
I have just finished a family holiday and have struggled to relax because of the worry.
I have started seeing a cbt therapist and this, along with mindfulness, I am hoping will help. I would really recommend you do the same. I think it takes the focus off the physical symptoms and helps address the root cause.
Take care, keep positive and try to stay in the present.
Vx
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Re: This is ruining my daily life

Postby trustme78 on August 30th, 2014, 5:04 am

Hi,
I am rather new into this as well. My symptoms started with burning (paresthesia) on my hands and later all over my body in April. Twitching came later.

I think we need to ask ourselves whether the symptoms ruin our life or the way we interpret them. Right now I have some kind of light buzzing in my right foot, a bubble feeling in my calves and upper legs and in the morning I noticed an internal tremor in my arm. Nothing really affected me or worsened my mood up until the moment when I started worrying there might be more behind it. I started the silly game of self testing and counted the months in my head since when my symptoms started (so looking forward to my 1st year anniversary post).

I have been seeing a psychiatrist for a couple of months. Helps me a lot. I can really recommend that.

Take care. Stay around and stay away from other forums. I think that's one lesson I learned in my relatively new time here.

Volkmar
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Re: This is ruining my daily life

Postby Squidge on August 30th, 2014, 7:29 pm

Hi everyone
Thank you all for your nice posts and words of wisdom. I shall certainly go down the CBT route and I also have a date with my GP who is also a trained hypnotherapist. I really need to reach the light at the end of the dark tunnel I have got myself in. I need to stop googling, start believing that I only have symptoms and not some dreadful disease. I think, whilst I do have some unpleasant symptoms, I find my thoughts are my worst enemy and are certainly not helping my body physically relax.
Now where's that glass of wine.................. :)
Best wishes
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Re: This is ruining my daily life

Postby veryworried123 on August 30th, 2014, 9:24 pm

Speaking of wine Read some of my posts
At the time I was at my worse I asked my dr what what will help this?

She asked if I like wine
I said yes

He locked the door and we sat there and split half a bottle of wine and she said I can speak to you for days about this but in the end "just stop giving a *beep*" that will make it better. It wot make it go away but will make it better

Thanks
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Re: This is ruining my daily life

Postby Yuliasir on August 30th, 2014, 11:06 pm

Hi,
I had noted that you believe everything would be good if nobody would mention ALS and will make your world cosy and warm to let you have a time for coping.
But you may know that in acute anxiety like we fellows experience one of the symptoms is selective informational bias when you meet ALS everywhere, from license plate to your own blog feed, in the advertizing, flashmobs and movies. World becomes full of ALS and each and every mentioning hurts.
So we other can do a little to help you.
You have to survice this period of acute anxiety, and then you would be able to separate yourself fron the people of all those tragical stories.
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Re: This is ruining my daily life

Postby Bibi on August 31st, 2014, 1:45 pm

Hi
I am only 4 months into this twitching . I started with twitching in my left foot and Calves 24/7 and every Day i have also Twitches in face , back , arms , hands .i also have A stiffnes in my thigh and it is unconfortable to Walk. When i Googled this i offcourse Found ALS and The fact that i am 55 and i Read that is " more often " hits in this age made me so scared . I went to A neuro after 2 weeks and he made A clinical which was fine. He didnt Said bfs , i dont know if You Can get this dxt here in Denmark . And i was off course still afraid and went to my GP Who gave me MIRTAZAPIN an antidepressive drug which helps me sleep. But as You i Can hardly live my live , as i Think about disease All The time , see atrophy and feel my Voice is changing. 28/8 i went to A neuro at A hospital and he only made A short clinical and told me that in ALS fascikulations only be seen When The light comes from The Right angle. He saw The Twitches i have in my foot and asked me if i wanted an EMG . He also Said that he saw no signs of ALS and that it usually runs fast so The fact that i have had it for 4 monts is good. I feel A little more Calm , but waiting for The EMG ( 1 to 2 months ) but i have now decided i Will really try to live my live now and not just wait. Today The Dance lesson started ( my husband and i started to take Dance lesson S last year ) and i was so nerveus that my leg which feels stiff wouldnt work . I was so scared about this so i was about not to go for The lesson , but we did and my leg did work , i could Dance . It was so Nice to Dance and forget about symptomes and fear. After The lesson The Twitches Start All over again and this still frightenens me ,i am afraid that The EMG Will show some bad things , but i WILL live and Dance as long as i Can. Hope that You soon Will feel some relieve , it is so terrible to live in fear !
Bibi
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Re: This is ruining my daily life

Postby veryworried123 on August 31st, 2014, 5:02 pm

It will be just fine

No worries

Thanks
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Re: This is ruining my daily life

Postby Yuliasir on August 31st, 2014, 10:13 pm

Bibi, it is normal to have increased twitches after physical load (for us BFS people) and it is excellent that you can dance!

it is a bit like stutter - people can sing but experience difficulties with the speech, same with the dance as it is more regular and contunous activity. Dancing is an excellent way to feel your body in fact does not betray you.
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