Restless Leg Syndrome

Posted by jimbourg8 @jimbourg8, May 14, 2016

I started having this burning feeling in certain pressure points in my body. Mostly on the elbows, under forearms mostly on my left side ….mostly worse in the late afternoon and evening. It’s usually burning and/or uncomfortable feeling when I am sitting down on couch or chair. the burning sensation like I said on pressure points of the elbows, legs, or butt when sitting even if only 2 mins or so and seems like I can’t remain still…….upon getting up and moving around it relieves the sensation. Went to neurologist 4 years ago……….he confirmed that it was Restless leg syndrome…………there are different types of RLS but the classic symptoms are a feeling of burning, tingling, and a general sense of unable to relax when quietly sitting or even laying down and relief comes when changing position and/or getting up. Diagnosis is by symptoms….there is not a definitive diagnostic test………all bloodwork etc…. is normal . I now take Gabapentin, and Klonopin to calm the “restless” nerves………..there is no cure for this ( my Neurologist says )……..It’s just something you have to learn to live with and take those medications for it……….It is believed there is a link between low iron (which I had) and and RLS . Now I take more iron (but that does not alleivate the symptoms so far . ( even when iron level becomes normal ) . I was diagnosed with low thyroid 5 years ago and started taking the levothyroxine to put my thyroid back to normal which it IS NOW. But even though I still have the RLS……..there is a possiblity that I had LOW thyroid for years before I was diagnosed with it……..hence I think (my theory) the RLS evolved due to the years of LOW thyroid. This is just my thinking on this. No Dr. Told me of that…..anyways I hope maybe this helps others and they can begin to pinpoint their symptoms and get a diagnoses.
I would love to know others with RLS and how they have dealt with it over the years. It seems to be a tricky act to balance the medications with side effects and still manage the RLS……..appreciate any feedback. Thanks Jim B.

Hi Jim,
Here's my experience, and please, professionals jump in. I was diagnosed with Severe RSL/PLMDS (which is now OLMDS). at the New Haven Sleep Center in Connecticut back in 1992. Over the years, we tried over 27 medications and supplements……many of which I've seen in this forum. Clonazepam worked well for 2 years (1994-1996), then abruptly stopped working. After running out of ideas, I made an appointment with the (then) Chairman of the RLS Foundation (Dr. Ehrinberg) at Tufts New England in Boston. He told me I'd tried everything, and he couldn't pull a rabbit out of his hat, but then he asked if I'd tried opioids. I said no, no one had ever suggested that. He said that in his practice it worked very well when nothing else would. I said I didn't want to be seen as a junkie, and have pharmacists give me THAT look, but he said, "if it is appropriate and works, then there is no reason not to use it."

I put that idea aside until I retired from the USAF, and in 2002 apparently kicked my wife in the side during sleep (the Organic Leg Movement During Sleep). She said that either I was going to try that medication or we were getting separate beds. My GP was not averse to the idea, the common dosage is between 5mg and 40mg. As we worked up, the RLS stopped at 20mg, and the OLMDS stopped at 30mg of hydrocodone. It worked perfectly for 18 years (the euphoria wore off after 5 years, and it just did what it was supposed to). Even when I moved to Iowa 12 years ago, the prominent sleep neurologist agreed that this was appropriate, and urged my GP to continue.

When opioids sudddenly became "bad," and the CMS started penalizing physicians and pharmacies that dispensed them. My GP tapered my off of them and now I have uncontrolled symptoms. We live in a "Culture of Pain" where even serious pain isn't treated with opioids, but :I noticed that Mayo still recommends opioids for RLS. I don't know how they distance themselves from the lunacy of letting people exist in pain and conditions that require them, but you might contact a sleep specialist at Mayo and discuss this. It was only last year that I read a paper from Mayo recommending this treatment.

Good luck…..I definitely feel your pain (actually, literally, I tore a rotator cuff and also ripped open a bicep, but can only down NSAIDS and hope I get surgery before the NSAIDS kill my kidneys and liver). Many have had great success with RSL and opioid treatment. Look up Dr. Ehrinberg relative to RLS and read some of his notes.
Cheers, Dave.

REPLY
@davidlyle7

Hi Jim,
Here's my experience, and please, professionals jump in. I was diagnosed with Severe RSL/PLMDS (which is now OLMDS). at the New Haven Sleep Center in Connecticut back in 1992. Over the years, we tried over 27 medications and supplements……many of which I've seen in this forum. Clonazepam worked well for 2 years (1994-1996), then abruptly stopped working. After running out of ideas, I made an appointment with the (then) Chairman of the RLS Foundation (Dr. Ehrinberg) at Tufts New England in Boston. He told me I'd tried everything, and he couldn't pull a rabbit out of his hat, but then he asked if I'd tried opioids. I said no, no one had ever suggested that. He said that in his practice it worked very well when nothing else would. I said I didn't want to be seen as a junkie, and have pharmacists give me THAT look, but he said, "if it is appropriate and works, then there is no reason not to use it."

I put that idea aside until I retired from the USAF, and in 2002 apparently kicked my wife in the side during sleep (the Organic Leg Movement During Sleep). She said that either I was going to try that medication or we were getting separate beds. My GP was not averse to the idea, the common dosage is between 5mg and 40mg. As we worked up, the RLS stopped at 20mg, and the OLMDS stopped at 30mg of hydrocodone. It worked perfectly for 18 years (the euphoria wore off after 5 years, and it just did what it was supposed to). Even when I moved to Iowa 12 years ago, the prominent sleep neurologist agreed that this was appropriate, and urged my GP to continue.

When opioids sudddenly became "bad," and the CMS started penalizing physicians and pharmacies that dispensed them. My GP tapered my off of them and now I have uncontrolled symptoms. We live in a "Culture of Pain" where even serious pain isn't treated with opioids, but :I noticed that Mayo still recommends opioids for RLS. I don't know how they distance themselves from the lunacy of letting people exist in pain and conditions that require them, but you might contact a sleep specialist at Mayo and discuss this. It was only last year that I read a paper from Mayo recommending this treatment.

Good luck…..I definitely feel your pain (actually, literally, I tore a rotator cuff and also ripped open a bicep, but can only down NSAIDS and hope I get surgery before the NSAIDS kill my kidneys and liver). Many have had great success with RSL and opioid treatment. Look up Dr. Ehrinberg relative to RLS and read some of his notes.
Cheers, Dave.

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The are c0mpromises. I jerk all day long and also have a back that can not take any more surgery. BUT KNOW WHY YOU TAKE COMBINATIONS I) my Tramarole is taken early morning and afternoon and at bedtime 50 mg MAMIMUM. I take Ropeinrole .5mg MAXIMUM at pre-noon, pre-supper and 2 0f .5mg at bedtime with the traminirole. The tramonrole does have an opiate but the amount is less then hydrocortine. I have relief but it does not get rid of all the pain. The Ropinrole keeps the legs from jerking when I get drowsy during the day. I also take two of Gabapentin 300 CAPSULES at bed time.(Listen folks! This is SPECIFICALLY for NERVE HEALING. The pills for 600-1200 mg are for RLS and another form is for shingles. Don't let your Doc mix them up. Does it happen? All the time by high flyers) I exist and function. If I increase, the game will be over. Accommodaion will take place. So, don't try to be cute and get rid of all your symptoms. It won't happen. Get a movement Neurologist who understands RLS and the brain Barrier. If you don't know what that means, see what too much magnesium does when it accummulates and can't cross the barrier fasr enough.!Good home work.

REPLY
@davidlyle7

Hi Jim,
Here's my experience, and please, professionals jump in. I was diagnosed with Severe RSL/PLMDS (which is now OLMDS). at the New Haven Sleep Center in Connecticut back in 1992. Over the years, we tried over 27 medications and supplements……many of which I've seen in this forum. Clonazepam worked well for 2 years (1994-1996), then abruptly stopped working. After running out of ideas, I made an appointment with the (then) Chairman of the RLS Foundation (Dr. Ehrinberg) at Tufts New England in Boston. He told me I'd tried everything, and he couldn't pull a rabbit out of his hat, but then he asked if I'd tried opioids. I said no, no one had ever suggested that. He said that in his practice it worked very well when nothing else would. I said I didn't want to be seen as a junkie, and have pharmacists give me THAT look, but he said, "if it is appropriate and works, then there is no reason not to use it."

I put that idea aside until I retired from the USAF, and in 2002 apparently kicked my wife in the side during sleep (the Organic Leg Movement During Sleep). She said that either I was going to try that medication or we were getting separate beds. My GP was not averse to the idea, the common dosage is between 5mg and 40mg. As we worked up, the RLS stopped at 20mg, and the OLMDS stopped at 30mg of hydrocodone. It worked perfectly for 18 years (the euphoria wore off after 5 years, and it just did what it was supposed to). Even when I moved to Iowa 12 years ago, the prominent sleep neurologist agreed that this was appropriate, and urged my GP to continue.

When opioids sudddenly became "bad," and the CMS started penalizing physicians and pharmacies that dispensed them. My GP tapered my off of them and now I have uncontrolled symptoms. We live in a "Culture of Pain" where even serious pain isn't treated with opioids, but :I noticed that Mayo still recommends opioids for RLS. I don't know how they distance themselves from the lunacy of letting people exist in pain and conditions that require them, but you might contact a sleep specialist at Mayo and discuss this. It was only last year that I read a paper from Mayo recommending this treatment.

Good luck…..I definitely feel your pain (actually, literally, I tore a rotator cuff and also ripped open a bicep, but can only down NSAIDS and hope I get surgery before the NSAIDS kill my kidneys and liver). Many have had great success with RSL and opioid treatment. Look up Dr. Ehrinberg relative to RLS and read some of his notes.
Cheers, Dave.

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Just a quick note. My personal experience with clonazepam….a very addiictive drug and bad for your liver. You zone out and it make you lethargic and fuzzy. I was on it for quite a wile and it was very counterproductive. It proved to be a detriment to me.

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@jimbourg8 Welcome to connect . We aren't Dr's but have a lot of information about our own problems that might help someone else . AboutRLS I use to have this but a friend told me about an old time remedy that works for her so I thought well won't hurt to try it . It's dill pickle juice . When your cramps or RLS starts reach for the jar and take a couple of swigs It works for me . Plus make sure you drink enough water , get your potassium and magnesium All the minerals make a world of difference to the body . I wish you the best

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The dill Pickle swig is a new one. Thanks

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@bill54321

The dill Pickle swig is a new one. Thanks

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@bill54321 Thanks but it has to be the dill not sweet . Another one is mustard . When out my friend would take the mustard packet and take it down to me that took courage

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@lioness

@bill54321 Thanks but it has to be the dill not sweet . Another one is mustard . When out my friend would take the mustard packet and take it down to me that took courage

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@bill54321 the dill pickle juice worked realky well for me and also settled my stomach.

Liked by lioness

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