Hello everyone! First post, advice needed :)

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Hello everyone! First post, advice needed :)

Postby nervous nel on March 29th, 2014, 7:12 am

Hello everyone, been putting this off for months but here goes! I've been lurking on this board for around 6 months now and think you're all amazing and have given me strength at my low points and for that I thank you all, I've got a pretty long history but would appreciate your time in reading this and all answers are greatfully received. I have suffered with muscle pain since I was 16 (im now 28) started affecting more parts of me, muscle burning and pain which arrived after activities or exercise, my neck would feel weak and I would hurt badly if you pressed my muscles, had a few tests done all come clear so docs said possible fibromyalgia, suffer chostocondritis (sorry if spellings wrong) then when I was pregnant with my daughter started having muscle twitching, started in my face badly then spread to legs and lots of other places this was in 2010 face calmed down but it's never gone away since, saw a neurologist in late 2011 I think as I was convinced I had ms, I'm an extremely anxious person, I wasn't really aware of the dreaded *** then so didn't even enter my mind, the neuro tested relexes and done some clinical stuff in his room like walking etc and he said he put it down to my fibromyalgia and discharged me there and then, since then my twitching as gone everywhere, my stomach started a lot in December and my tongue started a while back, ive had problems with my tongue going puffy and the teeth marks for about 10yrs but never noticed movements when I used to check it in the mirror. I saw a doc in September last year who said he don't think I have fibro but chostocondritis, possible hyper mobolity syndrome and because of having twitching so long he thinks it's bfs and told me to Google this instead and that's how I ended up here! My doc said the neuro I saw is crap and will refer me to another one who's good he said he couldn't of ruled ms out by what he did but I'm now petrified of *** and am utterly obsessed like so many others on here have been. My tongue moves lots up and down in centre the one side at the back pushes upwards I have the little twitches aswell, strangely I'm ignoring the others now as I'm fixated on this my tongue is also thicker one side but it don't look as bad when not swollen some days it's very still and not puffy like yesterday then today more of the same, if I post some vids and pics could I please have your input? I know you've done this for so many that it may irritate you but please look and tell me your honest opinion as I'm driving myself insane.
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Re: Hello everyone! First post, advice needed :)

Postby nrun90 on March 29th, 2014, 12:07 pm

From what I've read about *** it does not start with widespread twitching; which is very reassuring for you since you've had them for so long. I do not know much about bulbar onset, but I know it's rare. *** in and of itself is rare; especially at your age. So think of it this way: you have convinced yourself you have a rare form of a rare disease that usually does not affect people in your age group. (Read that somewhere and it helped me.) I don't know if you mentioned how long you have had twitching in your tongue, but again after a long period of time you would notice some deficit; which it does not sound like you have. Also, your tongue is a muscle and just like any other muscle, it's going to shake if you hold it out for too long and examine it. Believe me when I tell you this is easier said then done, but try not to fixate on the things your body is doing. Keep your mind busy. Spend time with your daughter. Get out of the house. And stay away from "Dr. Google." :D -Nick
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Re: Hello everyone! First post, advice needed :)

Postby nervous nel on March 29th, 2014, 1:28 pm

Thank you for your reply nick, I don't know how to post my videos or photos on here, my tongue I only noticed about nov/dec last year, I seem to have trouble with my s words I sound a bit like a snake... I can say all of them but when I have the tongue puffines that ive suffered with on and off for years it makes my tongue feel dry and funny and makes me talk a bit funny. Thank you for replying :)
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Re: Hello everyone! First post, advice needed :)

Postby ShawnW on April 2nd, 2014, 6:36 am

Obviously no one can diagnose you over the internet nor should you seek that. But, its obvious that you have much anxiety. When I read a history like yours with different docs thinking wildly different things I must wonder if you present very differently from doc to doc. Physicians are not generally going to confuse fibromyalgia with costrochondritis. They look very different. Anxiety causes us to focus on different things, and present differently from day to day...doc to doc. Nothing you said throws up red flags for anything ominous. The tongue is almost impossible to keep still. Even when trying to keep it still in your mouth, merely breathing can cause it to look like it's twitching and moving. Our minds are very powerful things. Reading about new disease processes, trying to diagnose ourselves gives our minds fuel...new symptoms to emulate. It sounds crazy but many of us have experienced reading about a symptom then developing it.

I will say though that there is one thing that you are experiencing that can greatly shorten your lifespan and that is unchecked anxiety. Your life would greatly improve if you recognize the real enemy. We wear our emotions physically, and it can greatly hinder our ability to enjoy life. Treating your anxiety should be your number one focus and concern. A few tips...if you adhere to these you will feel better with time.

1) Stop googling symptoms. If you must google, only google symptoms of anxiety and health anxiety.
2) Stop self testing as this makes things much worse, and can cause overuse syndromes...and more anxiety.
3) Seek professional help, some cognitive behavioral therapy to give you some tools.
4) Keep your mind busy with a new hobby.
5) Focus on relaxation, meditation, prayer, spirituality, massages, light gentle exercise (i.e. walks in the park), sea salt baths etc.
6) Avoid alcohol, caffeine, nicotine
7) Socialize, get out, get to know people especially those who accept and love you the way you are.

Hope some of this helps.
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Re: Hello everyone! First post, advice needed :)

Postby ShawnW on April 2nd, 2014, 6:44 am

nervous nel wrote:Thank you for your reply nick, I don't know how to post my videos or photos on here, my tongue I only noticed about nov/dec last year, I seem to have trouble with my s words I sound a bit like a snake... I can say all of them but when I have the tongue puffines that ive suffered with on and off for years it makes my tongue feel dry and funny and makes me talk a bit funny. Thank you for replying :)


Chewing gum can help with the S thing. That is a notorious sound anxious people focus on when they focus on their speech. S's sound weird when they come out of our mouths...but we rarely think about it unless we are focused on it. You are hyperaware. When my mouth is dry, and I'm thinking about my speech S's, Ch's Th's sound odd to me. When I'm focused on my speech I stumble on words, mess them up...have problems coming up with words. When my anxiety is in check I notice other people say them like I say them. My words come easy.
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Re: Hello everyone! First post, advice needed :)

Postby ShawnW on April 2nd, 2014, 6:49 am

PS-when your mouth is dry it's very difficult to speak correctly. The mouth needs lubrication for articulation. It also can cause the feeling of strain of mouth and tongue...tongue feels weird, thick heavy, burning, etc. We then speak, words don't come out right and freak ourselves out. This causes more mouth dryness...more speech issues, more fixation on our speech and it becomes a very bad cycle.
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Re: Hello everyone! First post, advice needed :)

Postby nervous nel on April 2nd, 2014, 7:10 am

Thank you so much for your reply shawn, I greatly appreciate it, you are right that my anxiety is off the charts, I was convinced I had ms and suddenly developed blurred vision.....I need to get myslef back, last night I was thinking to myself about my tongue again and next thing you know it feels like a little boxer is thumping underneath my tongue, that was enough to send me into a spiral of panic that is still going on, I can't remember the last time I went a day without staring at my tongue in the mirror, it's soul destroying, I thank you greatly for your advice x
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Re: Hello everyone! First post, advice needed :)

Postby ShawnW on April 2nd, 2014, 8:50 am

nervous nel wrote:Thank you so much for your reply shawn, I greatly appreciate it, you are right that my anxiety is off the charts, I was convinced I had ms and suddenly developed blurred vision.....I need to get myslef back, last night I was thinking to myself about my tongue again and next thing you know it feels like a little boxer is thumping underneath my tongue, that was enough to send me into a spiral of panic that is still going on, I can't remember the last time I went a day without staring at my tongue in the mirror, it's soul destroying, I thank you greatly for your advice x


Not a problem Nel. I understand health anxiety personally. It's amazing how our minds can create symptoms. We become like dead people walking, it robs us of life. I know you feel a bit like a victim in all of this, but trust me you do have a choice over worry. When you get triggered and you get anxious you have two choices...let it go and do something to distract you...or seek out solace through self examination and google. The latter will create more problems.
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Re: Hello everyone! First post, advice needed :)

Postby nervous nel on April 2nd, 2014, 9:00 am

Thank you shawn :) x
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Re: Hello everyone! First post, advice needed :)

Postby Yuliasir on April 9th, 2014, 12:29 am

Hi Nel,
as for your story, I do not see nothing really different from typical fibromyalgia description (pain, trigger points) and maybe some chronic sensopaty (burning pains), neither of which is seemed to be dangerous. Pregnancy may cause subclinical thyroid inflammation lasting up to one year after labours, so twitching onset during pregnancy might have roots in this disfunction which is hard to spot. The fact that yoiu had decrease in twitching about after year supports such suggestion.

Generally as a person suffering long term 9practically lifelong) anxiety disorder I may suggest to concetnrate on your anxiety as a main enemy :))) Psychotherapy is a great help on that way.
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Re: Hello everyone! First post, advice needed :)

Postby nervous nel on April 9th, 2014, 1:04 am

Thank you :) I appreciate your time and comment xx
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Re: Hello everyone! First post, advice needed :)

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