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Muscle Twitching


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#1 maria78

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Posted 25 August 2008 - 08:18 PM

Hi,

I am new here, and I would like to ask if any one else has muscle twitching all over your body?

I have also very tight muscles and joints, but I don't have skin changes elsewhere but in my legs. I have been diagnosed with crest.

I am sorry if my english writing is not very good, because last time I had to write in english was in school.

Am 28-years old women from Finland, I don´t know anyone else in my country who has this disease, so occasionally I'm feeling very lonely with this disease .

It has been nice when I come across this forum and could see that I`m not really only one with crest and problems.

#2 jefa

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Posted 25 August 2008 - 09:24 PM

Hi, Maria. Welcome to the ISN Sclero Forums. I am sorry to hear of your problems with muscle twitching. I do not have the problem myself, but I am sure others will share their own experiences. In the meantime, you may want to have a look at our medical pages, particularly the one on Musculoskeletal Involvement.

We have another member from Finland, a lovely young lady called epasen, who will make you feel less alone, as will everyone.
Warm wishes,
Jefa

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#3 janey

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Posted 26 August 2008 - 04:15 AM

Hello Maria,
I'd like to join Carrie in welcoming you to the ISN forums. We have a lot of members with varied experiences, so I'm sure you'll find a wealth of information from our members as well as from our medical pages.

I do experience the twitching in the legs and toes; primarily the calf and thighs muscles. Sometimes my second toe (next to the big toe) goes crazy. I also get uncontrollable twitching in my eyelids. I have found that that is related directly to stress. I haven't found a reason for the leg twitching however. It just happens every now and then.

I hope by finding this forum that you now do not feel so lonely. There are many people here to support you.

Big Hugs,
Janey Willis
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#4 Sweet

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Posted 26 August 2008 - 06:43 AM

Hi Maria,

Let me join the rest in giving you a great big warm welcome! So very glad you joined us, but sorry to hear it's because you have CREST.

I can relate to the twitching you are having because I get it off and on myself. I have no idea why it happens and either do my doctors, but it seems to run in spurts. I won't have it for months and then it will hit and I'll have it for days on end.

Again, welcome! I look forward to knowing you better.
Warm and gentle hugs,

Pamela
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#5 maria78

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Posted 26 August 2008 - 08:52 PM

Hi,

Thank you all for your kind words.

I don't know what an earth I was thinking when I wrote that I am 28-years old I`m really 30. maybe I`m feeling young.

My life has been one fight whit Finnish doctors since 2005, here where I live no doctors knows what is Sclero, first I have been
given many wrong diagnoses.

The doctors did not believe in the beginning, other than, that I imagine all pain. Antibodies however, there was positive Sclero on at the initial stage but however, the inflammation values were almost the collector's normal. Now I am at the point where I have inflammation continuously in my hips and I get cortisone stitch to them, the knees have swollen dry eyes, dry mouth and dry and itchy skin. Also the muscles are really stiff as well as my spine. The esophagus has tightened and it is difficult to swallow,tendovaginitises(?) etc.. all the time there is something.

Does this sound familiar?

Please, help and repair if my English is written wrong, then I learn it more.

#6 Amanda Thorpe

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Posted 27 August 2008 - 11:47 AM

Hello Maria

You are right when you say it's always something. Sorry you struggled through mis-diagnoses, many here did including myself. I was told I had leaking veins, what on earth is that? :huh:

I get muscle twitching, mainly in the legs and arms but nothing major. In the beginning I had muscle spams particularly when asleep and I would wake to find a limb flying in the air, I lost count of how many times I smacked myself in the face! :angry:

I hope now your doctors are working to give you appropriate treatment and can help ease your symptoms.

Make the most of this forum because whatever you are going through no doubt someone here will have experience of it and will be able to encourage you through.

Take care.

Amanda
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#7 Snowbird

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Posted 27 August 2008 - 02:11 PM

Hi Maria

I wanted to say hello too. Sorry to hear you are having such a difficult time with your crest symptoms. You will find many new friends here on this site that know a lot about this illness and will be able to help answer your questions. Keep asking anything you want to know. I hope you have a good doctor that can help you with your treatments. Take care.
Sending good wishes your way!

#8 razz

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Posted 27 August 2008 - 03:35 PM

Welcome Maria!

Don't worry about your english writing. You are doing good. We can understand what you are saying and most likely someone with muscle twitching can help you out. As you found out not all doctors know or have seen scleroderma. You sound like you have a lot of dryness in your eyes and mouth and itchy skin. We have several links here that might help you with that. You are right with scleroderma/CREST it's always something!

Maria, I would have said I was 28 too. Besides 30 isn't too far and you are still so young!

I didn't have muscle twitching, only toes cramping. It's very painful and happens at night. I was told to drink more water and add potassium (like bananas).

So keep writing and asking questions. We will try and help you!

Stay strong,
Razz
Live well, Laugh often, Love much

#9 Nina

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Posted 27 August 2008 - 06:14 PM

Maria ~ how wonderful for you to come to this forum from so far away. And isn't it great to be among such wonderful people? You sound so sweet, and the age thing? Don't worry about that, I can never remember exactly what age I am.. and it doesn't really matter any way.
I have been diagnosed with CREST~ and that came after ten years and three different rheumatologists...and not to forget all the Primary Care doctors (at least here in the US) who don't seem to know much at all.
This disease has done somelthing very interesting to me...it has brought me here to this forum, and for that I must be thankful.
Please know that everyone on this forum is sincere and we REALLY don't judge or make assumptions. You are where you are meant to be.
I am sorry that you are going through so much, and I do hope you find a doctor that can help you.
In the meantime ~ talk, talk, talk ~ and then listen, listen, listen AND read, read, read :-)
Welcome...
Much love,
Nina

#10 maria78

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Posted 28 August 2008 - 01:28 AM

Hi,

I really want to thank you all again, you gays have given me already so much.

While a go I was writing in here and I lost all my writing, becouse I push
some buttons and then the writing just disappears, that was just my luck,
well.... I can think this is good way to learning english. :)
I have to wind the same words that was not in my head even last time.

Ok.. Today it has been very rainy day here up north, my dog went outside and
went swimming on puddle, and then came inside and you all must know what kind of mess she prompted, it really feels like Monday....

To the point, I am going to rheumatologists 4.9, it is 3 hours drive from my home,
I do hope he are better treatment than my other doctors. I let you guys know how it went, after I been there.

I would like to ask one question again, what treatment have you been getting for esophagus proplems? Mainly esophagus tense(?), I mean that when you got problems of swallowing.

Now I want only give you all a big hug and wish you a nice day, with lots of sunshine!!

#11 Sheryl

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Posted 28 August 2008 - 06:12 AM

maria78, some people get their esophagus streched. Some times the swallowing problems only last a couple weeks and then it goes away for weeks or months. The acid reflux medications I take seem to have relaxed my throat and I no longer have swallowing or choking issues. I just take the nexium and reglan. I hope you find something that helps with the swallowing. Welcome to our group. Keep asking questions and we will do our best to give you updated information or our personal experiences.
Strength and Warmth,
Sheryl

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#12 Margaret

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Posted 28 August 2008 - 09:25 AM

Hi Maria ,

Welcome to the group. My son had esophageal dysmotility (his food wouldn't go down) and he was put on Plaquenil. After 2 months, his esophagus started working again. For the painful esophageal spasms, the doctors gave him Nitro tablets.....the kind that people put under their tongues when they feel like they are having a heart attack. He also takes Zantac twice a day for reflux.

Take care, Everyone.
Margaret

#13 canon

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Posted 28 August 2008 - 12:43 PM

Welcome Maria,

Hope your new Doctor is educated in scleroderma and its treatment. It is always nice to have a Doctor that is human too.

Haven't had any twitching but do occasionally get leg cramps. I started with esophageal problems when I was in my 30's too. It is now 20 years later. They stretched my esophagus in the beginning about 13 times for a stricture and spasms, once weekly and was supposed to learn how to do my own stretching. I never went back to learn that part. The medications they have are quite helpful.

Wish you the best in care and support. They certainly do care about you here.

Canon
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#14 smac0719

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Posted 28 August 2008 - 01:15 PM

I don't have a lot of swallowing problems, but if I don't chew carefully and pay attention when I swallow I sometimes I choke on my food. I have acid reflux and take omeprazole for it. I have had an endoscopy, but the only thing they found was the GAVE.

I'm glad you are are finding useful information here. Keep us posted.
I may have Scleroderma, but Scleroderma doesn't have me!

#15 Nina

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Posted 28 August 2008 - 01:24 PM

Hi Maria ~ I also had a esophageal web (that was the term used) back in 1994. Again, no mention of the connection to auto immune disease. After having the web stretched I was fine for many years. Now for the past 2 years or so I've been having problems once again with swallowing. I am taking Nexium (2 xs a day) and that does help some. I tend to have a problem when under stress, for me, that triggers my swallowing problems. I hope one day I will find the right combination of medications to help with that.
Margaret, I never heard of the "Nitro" angle, but I sure will suggest it. I'm beginning to believe we find "most" if not "all" of our help by sharing with others. Thank you all , for being so kind and sharing so much.
Much love,
Nina (DE)

#16 Margaret

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Posted 28 August 2008 - 03:07 PM

<<I never heard of the "Nitro" angle, but I sure will suggest it>>

Hi Nina ,

The nitro pills really did help Gareth whenever he was hurting so bad. He would hold his heart area and say how bad he hurt but his heart scans, etc., were all normal so they decided they were esophageal spasms. Within a few minutes of taking the pill, he would say "it's all gone." A few others have *chimed* in and said they have benefited from them, too. After he started on Plaquenil (about 3 months), he's hasn't needed the Nitro pills.

Take care, Everyone.
Margaret

#17 mscht

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Posted 28 August 2008 - 07:32 PM

If not, there IS another in Finland and her name is Tiina. I gave her links that included this one and think what a coincidence. Tiina is also about your age.

I am a newbie in chat here. Just got here tonight actually but I bet I know some here and just don't know it YET. lol

I also have twitching. It happens most at night and I have no control. It usually moves a limb and most of the time it is legs or feet but it happens some with arms and hands.

Cynthia in Bama

#18 maria78

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Posted 29 August 2008 - 03:26 AM

Cynthia,

Shame, I hope that Tina may write me an email so I could talk to her and ask more about Finnish healthcare etc. Small world.....

After I been in this site I already know that at least two Finnish people plus me who have this disease.

Strength and hugs for you all!!

It is also bean great that everybody has been so nice and helpful. I really do feel like I´m belong here too.... whit the people who
care for others.

#19 MicheleM

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Posted 29 August 2008 - 08:09 AM

Maria,

I have experienced the same tightening as you along with muscle twitching which can be very bothersome! And just to let you know ... my husband is 1/2 Finnish last name Maki! Huva Tuta!!!! I know very limited Finnish & always had hoped to learn before my father-in-law passed! However, that didn't happen however I do know a couple of words (obviously) and do make some recipes! So it really is a small world!

I'm sorry that you've gone through so much with the doctors but they aren't a whole lot better in the US sometimes. Many people - including myself - have been told we're imagining the symptoms or it's depression or it's something. I tested positive & was then told it wasn't Sclero then it was then it wasn't and now it is again. I have lung, intestinal & some skin tightening (mainly in my face/skull) along with small mouth (even though no one believes me!)

I'm glad you found this board and are comforted somewhat by those here who really care and all the good information you will find! I have found my doctors listen a whole lot more to me when I am aware of what is happening, could be happening or has happened and that all comes from reading and asking questions of people like those here who KNOW what we're all going through!!!

Welcome, welcome, welcome and best wishes sent your way!
Soft hugs your way,

Michele