AAARGH..Ok I hit enter before I was done and I don't think it will let me go back!! So please comment if you haven't had this or if it is just limited to one body part. Mine is all over my body, even in my neck muscles but I think it is the most in my legs.
Hi Carolyn, I have had it going on ten years now, it started in my calf muscles but now I get it in all my limbs and occasionally in other areas. It started with this strange feeling of ants crawling on my skin witch is annoying when you are trying to sleep.....
It looks like there is some thing moving around under the skin.
Yes I have muscle twitches too! pre-op and post-op all over. Post-op mainly above my right eye. Also does any one gets muscle cramps in their stomach ? The kind where you are unable to move until it it gone?
Yes,,,I had it bot b4 and after....more b4, but I am still going thru changes since surgery, but I do get them.
Ray- that is exactly how it started with me too...ants crawling feeling for months and then all of a sudden these muscle twitches all over my body. When it first began I kept thinking that something was banging against my thigh but then it started other places and I realized what it was. I guess if you've had it for ten years it is probably something that won't go away...it doesn't hurt or anything but it is annoying and I hate the look of confusion on doctor's faces when I tell them about it!!
608lion- I haven't stomach cramps that stop me from moving but I have had muscle jerks there that are so forceful it feels like someone has kicked me in the stomach and makes me jerk out of sleep. Most of my severe cramps or jerks seem to be just when I am falling off to sleep... that is when my jaw snaps shut too..
Speaking of painful ones...has anyone woken up in pain b/c there muscle is cramped at the elbow and you can't stretch your arm out straight? That one just happened the other night.
yes i get this too and i'm preop. Mostly mine is my eyelid, cheek but close to my ear, and shoulder. All these are on right side. My legs are different they get that crawly feeling then it feels like someone put them in a vice almost like they're cramping up but different.
Yes, I get them all over. They started back in November 2009. I thought to myself, "what now?"
I told the last Neurologist I saw and he said "maybe your magnesium level is down; you should have it checked." I had recently had a Mg level drawn in November and it was normal. I thought to myself this is "NO magnesium level problem" but something else.
My legs have that too, it never stops, it's like a constant crawling feeling...I'm not sure if it's constant fine muscle movements or just really noticeable tingling..
If it's muscles I know why my muscles are so tired, they never stop working!!
When it came to muscle twitching and cramps I was told to have my magnesium, potassium and calcium and vitamin D levels checked.
Once u have that checked and u r good mayb the dr will consider it is from something else....my drs also checked me for lymes , lupus and MS......
I noticed the cramping again last night, the first I had that since surgery : (
I had all that checked too a long time ago when that all started and it came up normal..
I have decided to insist that my dr do some autoimmune test when I see her, it was something I was going to do before but then I put it off when I found out I was going to have surgery. (I had an MS MRI and was told no lesions, that is when the Chiari was labelled "incidental")
Apparently, this dry mouth, burning tongue thing can be an autoimmune disorder...since that's come up I've had burning, itching swollen eyes, night sweats, ear pain...all stuff I had before but it seems to be coming to the forefront. My NS did mention to me when I saw him post-op that some of my symptoms could be from something else and that time would weed them out. I figure why can't my DR just do some simple blood tests?? I was going to ask for ANA, RF and ESR tests, do you have any suggestions?
Many of us do have autoimmune disorders and connective tissues issues as well...RA,EDS,Hashimoto's thyroiditis, DDD, .....and I have all those, so I know ....and u never know what it is that is causing the current symptoms.....lol.....
To rule out Hashimoto's u need TSH, Free T3 and Free T 4 and TPO antibodies........I also had a echo cardiogram done.....and a ultra sound of my caradid arteries (sp) which only showed the nodules on the thyroid....(MI also had heart palps that is Y my heart was checked)
Do u have IBS or acid reflux?
Yes, I have been told that I have IBS and I have had a lot of problems with acid reflux for years..
I did have an ultrasound of my thyroid (I am hypo and take meds) because of the fullness feeling in my throat and they did see nodules too. I was told they were too small to cause a concern but something that they would check on in 2 years (that was a year ago). I was never tested for Hashimoto's and my T3 and T4 was tested when I was pregnant (3yrs ago) but not since, they just do the TSH (and even that hasn't been done in about 8mnts). I am going to add those tests to my list, I really feel like my GP has dropped the ball here. I did find that Hashimotos can cause a dry mouth so it even could be that I am still having a problem with my thyroid.
I'm just so frustrated, I feel like I have to go in with both guns blazing to get some action but I am not going to give in...
Well if u have nodules u have Hashimoto's...what meds r u on synthroid?
In order to be sure the meds r correct ur labs should be done every 6 months....and if they r only looking at TSH it can appear normal.Plus with Hashi's u can fluxuate btwn being hyper and hypo.
And it is an ENDO that should be keeping an eye on this...I fired 2 so far and told my PCP about how the testing should be done and he did and found I did need meds....when the ENDO only looked at TSH and said it was normal so I did not need ne......I gained a lot of weight in a short time when I went hypo......and now need to get rid of it.
What dosage r u on? I was told it can take time to regulate the right dosage.
I've always had muscle cramps in my calfs also my hands and feet have painfully cramped up spastic like. The last couple of days i have had my hands and feet cramp up as described, it is so painfull. I have also experienced involentary movement in my right leg and foot which made me lose my balance and fall over. When i walk, i start off ok, but with a limp, then after a short while i end up walking like a spastic dragging my right leg and my neck and spine feeling stiff and i cramp up spastic like
i have also had the crawling feeling too. And i too suffer badly from IBS and Acid relux. I read somewhere online that IBS could be related to Chiari, i don't know this for sure though, does anyone else think this could be?
Yes acid reflux can be related to chiari....I also have Ehlers-Danlos which is related to chiari.....and with it u can get a hiatal hernia which in turn causes acid reflux.
Also chiari can cause Post nasal drip which can result in acid reflux.
There r several ways to relate it back to chiari.
AS for IBS, again, if u have acid reflux u can also have IBS......so it goes round and round...plus if u have tethered cord, that would also affect bowel and bladder function.
Astra- That is how my legs were as well before the surgery...the longer I walked the spastic and painful they got. That is one big change the surgery has done for me, I still have a limp and slight cramp but nothing like I was experiencing before.
Selma- That is what I thought..I was convinced I had Hasimotos a long time ago..I had all the symptoms and for a long time I thought that was what was causing everything. However, when I asked my doctor what would cause me to go hypo her response was "well after pregnancies it can just kind of give out". I would like to see an ENDO but they are always so nonchalant about it like I don't really need one. When I first went on the meds I did feel like I was going up and down, my heart would race and I'd be all jumpy...I actually went off the meds after I gave birth b/c of that. The did tests and said my levels were fine and then a couple months later they dropped again. So I guess I need to request to see an ENDO too...I really don't understand why they just can't do their job!!!
Oh and I am on 50mg of synthyroid...which I believe is a fairly low dose...
Not really I was on 1/2 of a 25 mg had to cut it in half, now I am on 25mg...so u have more than me : o......
When u look for a ENDO....ask lots of questions and if they focus their practice on Diabetes...run and do not look back...they tend to only check TSH, hence y I fired my ENDOS........
Check out the Thyroid forum here on MedHelp...that is where I get most of my info on Hashi's.
THANK YOU!!! I need all the help I can get!
Thanks for your comment,I forgot to mentiion i do have Hiatus Hernia too,but i have always called these symptoms GERD.
The cramps and involentary leg movements and the wlking problems i have had since i was a kid,but nothing was ever looked at and it was only in recent years ( 6 years ago ) that i went along to my GP about all of what was happening to me concerning chiari as i now know what is wrong with me and i had to have a row with him before i was refered to a consultant and before that i was told i was a hypocondriac by my GP who was a bit nasty towards me. I then had the MRI scan my GPs attitude towards me changed. And then nothing was ever explained to me, so i had to find out for myself on the internet what this chiari thing was and its symptoms was and only then did i know what to expect. Then i started to look into different websites to compare my symptoms with what other people were experiencing.Then i came across this website which i think has much more to offer in the way of help...Astra!
I get a painful involuntary twitch/ spasm of my body right as I am initially falling asleep on most nights. I feels like a sharp stab starting in my mid back on the side opposite to which I am lying on. It is so intense, I jerk my whole body and It often wakes me up. I dont seem to get it if I am lying flat on my back for some reason. Stacey
Spaceystac- Sound like we have the same thing...isn't it great?? Good way to have a heartattack anyway, I always have to catch my breath afterwards!
Astra- I think my GP and yours must be related!!! Mine didn't go as far as to say "hypochondriac" but she did mention "stress disorder" and this was AFTER she was informed of the CM. At that time the NS wasn't sure about operating b/c the MRI pics I had were of low quality but when he got the diagnostic copies and saw how there was no room for CSF flow he quickly recommended surgery. When I saw my GP for the pre-op she said nothing, she was very professional about it, no apology. Haven't seen her since surgery (7wks ago) she never came and saw me in the hospital or called. Anyhow, I made an appt to "clear the air" on the 24th!! I also had to do all the research on my own and thanks to this forum I will be going in this time fully prepared!
Hey carolyn! Just wanted to let you know that when they did my MRIs they had to repeat several sequences because my legs and arms kept twitching! Lol Its real hard to lay perfectly still when your leg jerks uncontrollably!!! Ha!
I know they kept telling me to sit still with mine too...I was like, I'm trying!!
When I got my nerve tests the nurse wouldn't believe me that I was unable to relax my feet and hands...and I was like, do you really think I want you to up the voltage??
Give me a break!!