Muscle Spasms

Hello to all on this wonderful website. I just want to know if any of you have been suffering with muscle spasms in various strange places throughout your body? The latest episodes are happening under my chin, my diaphram (mispelled), my fingers, and the back of my neck. The spasms in my neck and under my chin are so intense that it feels like it is pushing my eyeballs out of the sockets. My pulmonologist seemed dismissive and told me to relax. I don't live a stressful lifestyle at all. I drink plenty of water and I eat pretty well. They become quite bothersome when they occur while driving or having a conversation with someone and you can't move your jaw or it will intensify. I am currently on a low dose of 10 mgs of prednisone, azathioprine, atenolol and medicine for pain. None of the these medications are new to me, but I just want to know if this problem is common to this multifaceted disease. Any information will help as I am going through a flare up. Thanking you in advance for your help. Take care everyone.

By gonenatural
Posted October 9, 2008 at 7:56 pm

Hi Lisalee,

Have you looked at your calcium levels lately? Low calcium can cause spams.
Good luck in your recovery from this.
Gone Natural

By harmles2
Posted October 10, 2008 at 8:20 am

lisalee,
yep, I to get these, ..... they have not gone away, they are sometimes more pronounced than at other times. Sarc can invaid our muscles and our nerves (neuro sarc). Mine seems to act up when I go to bed or relax, or its then I notice them more. It freeks my wife out to feel it or watch it happening.

My spasms/twitching is mostly confined to my legs. The whole muscle doesn't twitch, just small portions. I recommend taking a video with a digital camera (most can do short video clips) saving on a hot stick, CD, or laptop if you have one and bring it in to your DR. Only by seeing it will they believe you. Make sure the light is best to show the spasms clearly.

If you have sarc and are like me, a pred dose as low as 10mg wouldn't do squat to stop the sarc symptoms. Most DR's will start people at 40-60mg for 90 days then gradualy back down to 20 or so and see how things respond. Side effects not fun though.

Atta girl, you have my admiration for take'n care of yer kids as a single mom. :-)

Harmles2

By Lisalee
Posted October 10, 2008 at 11:39 pm

Thank you for a stellar idea. I can keep the digital camera near me so that when they start again, I can prove to my doctor that I am not the hypochondriac that he thinks I am. I wonder after he sees it, will he tell me to relax. Thank you.

By ostrichlegs
Posted October 12, 2008 at 12:32 am

i do have muscle twitches/spasms all the time, just under the skin called fasciculations you can see them, then just like the other response you got, when i relax or go to bed i begin to jump and spasm more violently, jumping off the mattress almost every night, since the 40mg of prednisone these have subsided but not gone, as we taper down slowly at small amts, they are coming back quickly, i have head bobbing with strong pulling back on my neck, like a head jerk backwards and my body jumps when sitting or laying down. thanks for sending your info, you're the first person i've heard with the close same thing as I do, that makes me feel a bit less phsyco. hope all goes well, please let me know what happens with your twitchs,etc. thanks again for posting.

By pamk
Posted October 12, 2008 at 9:14 am

I get muscle spasms as well and just found out what is causing mine. The rheumie I went to told me my vitamin D is so low that it is causing the spasms. It can also cause pain in the muscles and bones.Then he tells me that taking too much D is dangerous to people with sarc. I know this from the research and personal experience. You might want to get your calcium and D levels tested and then see a dr who is knowledgable in these areas including sarc. Maybe a rheumatologist is a good dr for all iof these issues Hope this helps.

By llinypooh
Posted October 12, 2008 at 11:50 am

For muscle spasms my Doctor prescribed a Potassium Supplement by prescription. I was getting them at night time more than day time. Do you get them in your fingers and neck

By PurpleSnowflake
Posted October 12, 2008 at 3:27 pm

I to had a very low vitamin D level it was 9 I was very weak and had terrible flank pains and muscles spasms in my legs and throat even. It felt like someone was choking me. I would definetly get your Vitamin D checked. I have to take 2000 IU for a couple months my physician said it would take a while to get back to normal levels.

By JanFitz
Posted October 12, 2008 at 6:23 pm

HI, I have always been prone to muscle spasms, however they have gotten worse, in my feet and ankles and hands. Due to the sarc I have had high calcium for the last 3 years (15 to 10.5) and am now on 20mg. of prednisone for the last 2 months (soon to be raised since my # isn't coming down) My vit D is now in the normal range (was high) and my spasms may happen 10 times a day and then not for a week. I can not figure it out. I drink alot of water, I can not tell if exercise helps or increases the spasms. They can last a long time too.
None of my doctors seem to care, just say probably from the elevated calcium.
In our local paper someone recently recommended to take pickles or pickle juice when then are happening...it worked last nite! Who knows but I will try it again..what the hell, nothing else seems to reduce the pain and spasms.

By Petty
Posted October 12, 2008 at 6:51 pm

I to experience spasm in my hands, fingers, feets , legs and twitching of my eyes. My doctor said maybe it is the Sarcoidosis but he just lightly brushed it off as well. These would last about 10 to 15 mins and are very painful. I do not take anything for it.

By Lisalee
Posted October 13, 2008 at 10:49 am

Thank you all for responding and with very helpful advice. I will be traveling to UAB in Birmingham to see a sarc specialist on the 20th of this month. I will definitely ask to have my calcium levels checked and I will also seek out a rheumatiologist here locally when I return. I am going to see my local pulmonolgist today and will revisit the subject again and hope for some help from him even though he is limited to diseases of the chest. The pickle juice idea sounds delicious and I will try it out tonight. I hope that this flare is over soon. God bless each and every one of you for sharing with me.

By prettydisaster
Posted October 13, 2008 at 9:31 pm

i sure do my doctors have me on tylenol 3 and 4 for pain ... sometimes i cant stand up but i hope urs get better my pain is mostly all over my body aswell

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