I am getting desperate and do not know where to turn next. Was diagnosed with RLS - PLMD over 10 years ago and put on Clonopin. I had a thyroidectomy 6 years ago and have bouts of hyperthyroid as well as hypothyroid. Began having serious problems with insomnia September 2006. Have been hospitalized several times and on numerous anti-depressants and sleeping medicines which made me violently ill. Had a sleep study done April 13 and was told my PLMD was due to mild sleep apnea (5 episodes), that I did not have RLS, to stop taking the Clonopin and begin taking Ambien.
I sleep half the nights I take the Ambien. Am always tired. Have a loud ringing sensation in my head. My legs look there are worms crawling around in them....the muscles and nerves quiver. Several of the nights I have been awake my legs began jumping. I just am not sure if this is the RLS again, effects of hyperthyroid, or if it is from extreme exhaustion.
My question is.....has anybody else had this strange sensation in their legs that the interior muscles and nerves appear to be moving around and it looks like worms or snakes are crawling under the skin. Is this a different form of RLS ?? I thank you in advance for your help.
help !!!
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SquirmingSusan
- Posts: 3028
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- Location: Minnesota
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Hi PJ. Sorry you are having so many difficulties with sleeping and everything else. My heart goes out to you. I know what that's like.
One thing I can tell you for sure is that doctors cannot diagnose or rule out RLS from a sleep study. If your doctor tells you otherwise, he or she doesn't know much about RLS. RLS symptoms occur while awake, and RLS is diagnosed from the patient's description of the symptoms. The other thing is that in my experience and that of others I know, is that sleep clinics seem to always diagnose apnea! They tried that with me and I clearly do not have apnea from my sleep study. Grrrr.
I've copied a link to the criteria for RLS from the RLS Foundation, and also some of the information at that link:
http://beta.restlesslegs.org/what_is_rls/
I guess I can't tell from your description of your symptoms if it's RLS or not. With RLS it's a feeling in the limbs that propels you into movement. It's kind of like being tickled, you can't really not move. There is usually nothing we can see. Some of us get "fasciculations" which are little muscle twitches that move around the leg and we can actually watch. But that's not RLS.
Sometimes doctors diagnose people who have problems with insomnia as depressed and put them on antidepressants, which makes the RLS worse. Maybe that's what happened to you.
Also, that thyroid thing will make you absolutely crazy! I know. Mine fluctuates from month to month - sometimes normal, sometimes way hypothyroid.
Have you looked at the Mayo Clinic Algorithm? You can find a link to it in the sticky in the "New to RLS" section of this board.
Best wishes with it all. Please keep us posted on how you're doing.
Susan
One thing I can tell you for sure is that doctors cannot diagnose or rule out RLS from a sleep study. If your doctor tells you otherwise, he or she doesn't know much about RLS. RLS symptoms occur while awake, and RLS is diagnosed from the patient's description of the symptoms. The other thing is that in my experience and that of others I know, is that sleep clinics seem to always diagnose apnea! They tried that with me and I clearly do not have apnea from my sleep study. Grrrr.
I've copied a link to the criteria for RLS from the RLS Foundation, and also some of the information at that link:
http://beta.restlesslegs.org/what_is_rls/
Restless Legs Syndrome is an overwhelming urge to move the legs usually caused by uncomfortable or unpleasant sensations in the legs. The sensations have the following features:
* Occur during periods of inactivity
* Become more sensitive in the evening and at night
* Are relieved by movement of the limb
* Often cause difficulty staying or falling asleep, which leads to feelings of daytime tiredness or fatigue
* May cause involuntary jerking of the limbs during sleep and sometimes during wakefulness.
I guess I can't tell from your description of your symptoms if it's RLS or not. With RLS it's a feeling in the limbs that propels you into movement. It's kind of like being tickled, you can't really not move. There is usually nothing we can see. Some of us get "fasciculations" which are little muscle twitches that move around the leg and we can actually watch. But that's not RLS.
Sometimes doctors diagnose people who have problems with insomnia as depressed and put them on antidepressants, which makes the RLS worse. Maybe that's what happened to you.
Also, that thyroid thing will make you absolutely crazy! I know. Mine fluctuates from month to month - sometimes normal, sometimes way hypothyroid.
Have you looked at the Mayo Clinic Algorithm? You can find a link to it in the sticky in the "New to RLS" section of this board.
Best wishes with it all. Please keep us posted on how you're doing.
Susan
Thanks Susan, 
. I have spent the better part of today researching RLS, its symptoms....and also hyperthyroidism. I do believe I have RLS but a very mild form that is secondary to a thoracic spinal surgery. It appears to be aggravated only by extreme amount of walking. I now think that what I am experiencing is hyper muscle reactivity associated with my thyroid medication. I have had two decreases in thyroid medication since stopping the Clonazepam and my symptoms seem to indicate another decrease may be needed.
All the symptoms palpitations, head ringing, shakiness, insomnia, weight loss and muscle irritability (includes the worms in the legs and cramping). Your website has helped greatly in my processing of information. At the best of times doctors make us feel we are crazy for having these feels and at the worst of times we begin to believe we are.
You are angels sent to guide the rest of us and it is greatly appreciated.
Thanks.
. I have spent the better part of today researching RLS, its symptoms....and also hyperthyroidism. I do believe I have RLS but a very mild form that is secondary to a thoracic spinal surgery. It appears to be aggravated only by extreme amount of walking. I now think that what I am experiencing is hyper muscle reactivity associated with my thyroid medication. I have had two decreases in thyroid medication since stopping the Clonazepam and my symptoms seem to indicate another decrease may be needed.
All the symptoms palpitations, head ringing, shakiness, insomnia, weight loss and muscle irritability (includes the worms in the legs and cramping). Your website has helped greatly in my processing of information. At the best of times doctors make us feel we are crazy for having these feels and at the worst of times we begin to believe we are.
You are angels sent to guide the rest of us and it is greatly appreciated.
Thanks.
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sugbrendas
- Posts: 234
- Joined: Thu Aug 05, 2004 7:28 pm
- Location: Balto.
- Contact:
I think you need a second opinion, all that you mentioned are my symptoms and i have never heard of having RLS,seeing the movements and then being told you do not have it.
You can see mine on most days too.
How did you do on the Klonopin?
Even if the Dr doesn't "believe" you have RLS why not give you what makes you sleep.
You can see mine on most days too.
How did you do on the Klonopin?
Even if the Dr doesn't "believe" you have RLS why not give you what makes you sleep.
Finally able to sleep on average 9 hours a night!
Brenda
Brenda
hello all--i'm a new kid on the block and i have been dealing with rls and plms fpr 40 years or so and i have yet to try anything that works for me
except to get up and move--never had a problem getting to sleep but after
2 or 3 hours i will be jerked awake by the good ole rls and plms and that is all the sleep 4 that day--have stopped taking any rx or otc meds because sleep study after sleep study showed that i wasn't any better
taking all that junk than i was without it--have also been to the duke university movement disorder clinic and they didn't help any either--
so-all i can say is good luck to everyone and God bless you all--JD
except to get up and move--never had a problem getting to sleep but after
2 or 3 hours i will be jerked awake by the good ole rls and plms and that is all the sleep 4 that day--have stopped taking any rx or otc meds because sleep study after sleep study showed that i wasn't any better
taking all that junk than i was without it--have also been to the duke university movement disorder clinic and they didn't help any either--
so-all i can say is good luck to everyone and God bless you all--JD