Patient letters on RLS symptoms and remedies- Page 38

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However, I started having different aches and pains throughout my body afterwards and have since been diagnosed with costochondritis,  fibromyalgia, and generalized anxiety disorder (sounds like fun, doesn't it?!)   

Now, that brings me to August when I started having the crawling sensation, or a goosepimple-like sensation in the thigh of my left leg.  Since then, it has spread to my lower left leg and right leg as well, almost on a daily basis.  But, It seems to affect me mainly during the day, though, and does not wake me at night- which I am grateful for.  

I am currently taking 15mg Buspar per day for anxiety, which does not seem to make my legs any better or worse.  Anyway, my doctor told me the leg problem is related to the anxiety, and that he wasn't familiar with my symptoms.  Does this sound like RLS to you, or something like it?  

Thank you for your time.

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My doctor's plan on this is for me to take Sinemet and slowly taper off the Klonopin (I am on 1 mg now).  However, I still feel like I need a sedative to get by the initial jerks that I have upon falling asleep. Apparently, when I fall asleep, I fall so hard, I skip stages of sleep and then I get the jerks that wake me up.  

Is there any natural way to avoid this so I can avoid taking the sleeping pill (a couple of nights, I have been able to fall asleep with the TV. on because the noise may keep me from falling so hard).  If I take the Sinemet it has absolutely no effect on the initial jerks that I get when I try to fall asleep. 

Furthermore, I read from your treatment page that it only works for 4 hours; don't I need a longer lasting Parkinson's drug?  Is there any natural way for dealing with these initial jerks?  Is there a way to slow down my moving into sleep stages?  I just feel like I will always need a sedative for this and tolerance seems to be a problem with any sedative.  If I am 32 how can possibly take a sedative for 40 to 50 years? 

As I understand it, this is a mild form of PLMD.  How does the PLMD progress in patients with this mild form?  Does it get worse like RLS? As I also understand it, I have a 30% chance of getting RLS, is that correct?

Kevin O.

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Jo M.

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Thank you, 
Pat T.

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My wife recently had a child and during her pregnancy she acquired RLS.  She has no previous history of RLS.  It was bad enough to prevent her from sleeping most of her last 3 months of pregnancy.  To our relief the RLS has only reared its ugly head one time since then.  

My question is;  can RLS continue after pregnancy as a result of getting it during the pregnancy?  One of our fears is that if we choose to have another child, and if she gets RLS again during her pregnancy, that it may not go away after the pregnancy.  Thankfully this time it did.  If it can continue after a pregnancy, what is the percentage of the time does it continue? 

Any help would be greatly appreciated,
Lucus B.

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Another sleep study was performed while on Klonopin, with the results that I was still kicking 18 times per hour over a 6 hour sleep period. I should add that I have had a previous sleep study done looking for evidence of sleep apnea. This respiratory specialist found that I had a mild case of sleep apnea, not bad enough for a CPAP unit. She also said that I had "an intrusion of alpha waves in my sleep and there was nothing that she could do for me"! 

Well when my current sleep specialist told me that I had RLS, I asked what did the respiratory doctor's report indicate.  It showed that I had kicked 774 times over an 7 hour sleep period. This was my "alpha wave intrusion"!! In the ensuing time I had stopped taking Klonopin and tried Sinemet and Sinemet CR without any success. 

Currently I am back on 1mg of Klonopin along with .5 mg of Mirapex with very limited success. I awaken, as I have for the last 5 years feeling totally exhausted, like I never had slept at all. I personally feel that I am not getting stages 2 & 3 of sleep? I do have some REM sleep (that I know of) early in the AM which always awakens me, ending my nights sleep. My normal length of sleep is 6 hours, this being the absolute maximum, never more than that. There are nights that I suffer from onset insomnia and get only 3-5 hours of sleep. 

I do not have the creepy, crawly feeling in my legs any more during the evening before bed (which I had previously). There is no pain involved. I avoid caffeine, alcohol and keep regular sleep times with no daytime naps. Additional meds that I take are 800IU of vitamin E, 20 mg of Lipitor, 20 mg of Losec and 250 mg of Ticlopidine. The latter twice daily. My ferritin level is 80. My deceased mother, one of her brothers and 3 of my first cousins on my mother's side have this, only to a lesser degree. 

Any suggestions you may have will be greatly appreciated. 

Thanks, 
Don

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I wrote to you a couple of months ago about the possibility of the anti-depressant Prothiaden making my RLS worse, and you replied it might well do so. After discussion with my psychiatrist, I decided to go off the Prothiaden slowly, and when I got to a low dose (25 mg, just one tablet) I had a few wonderful RLS free nights.

However, my irritable bowel syndrome (IBS) got worse as the anti-cholinergic effect of the Prothiaden had been helping. With the IBS the RLS came back, but in a somewhat different way - less jerks and more "tension building" before the odd jerk. At first this wasn't too bad, but is now slowly worsening and I'm almost back to where I was with the Prothiaden (which I no longer seem to need for depression or anxiety - these haven't come back).

Mirapex and Requip are not available here in Australia. So what would be the next best thing? (I have tried Sinemet and Tegretol, but the side effects caused me to stop them).

One other thing I have come across is the relationship between tyrosine (and muscle catabolism) and leucine in CFS people. The following is an excerpt from an article "An Update on ME/CFS Research at the University of Newcastle" in the "Queensland ME Quarterly", p22-23. (The University is in New South Wales, north of Sydney).

"Many of the symptoms of CFS are consistent with a host response to pathogenic challenge. The issue we are focusing on is the proteolytic response, or catabolism, which involves muscles, acting as a protein reservoir, which release amino acids to fight infections and to build new materials when needed. This well documented response is seen in trauma, infection, stress, certain genetic anomalies, acquired disease states and cancers. There are two types of storage reservoirs, the fibrillar reservoir of muscle fibers used for contraction and strength, and the non-fibrillar reservoir of non-structured proteins from inside the cytoplasm in the cell.

A key amino acid indicating non-fibrillar catabolism is tyrosine. Increased levels of urinary tyrosine are a very well documented indicator of a proteolytic response. Urinary tyrosine levels in most patients with CFS indicate a non-fibrillar response. What this means is that there is an underlying organic process in most of the patients with chronic fatigue or chronic pain conditions. When the non-fibrillar response is insufficient to meet demands, the fibrillar response is switched on like a back up system. In many patients we see the amino acid 3-methyl-histidine, which is the marker for this fibrillar response. So, using well documented markers of metabolism, we have found that the body is responding to some kind of prolonged, traumatic, perhaps infectious, challenge.

As the protein reservoirs release nutrients, rising levels of the Branch Chain Amino Acid (BCAA) leucine switch this proteolytic response off. We find in most patients that the leucine level is very low, sometimes undetectable, meaning catabolism will be sustained. The tyrosine/leucine ratio then gives us an indication of the extent of the proteolytic response."

In my CFS tests done two years ago through the University of Newcastle, I have definite fibrillar and non-fibrillar responses, my urinary tyrosine levels are way above normal, and my leucine levels below normal. My 3-methyl-histidine levels are also high. My tyrosine/leucine ratio is 8 when it is considered that problems arise above 4.

Having seen this article recently (I didn't know about the role of leucine before), I decided to give the BCAA's a go (they can be bought over the counter at a health food store). Please note that the article does not specifically refer to restless legs, just catabolism, but given my test results and symptoms I thought a connection was possible.

The BCAA mixture contains leucine, iso-leucine and valine. I found that the BCAA tablets are very good for restless legs - they fixed the problem! No more "tension building" and jerking, or the need to get up and walk around.

On the down side, I have found that I now have a tingling/burring sensation in my feet and lower calves, and a little tingling in my fingers. This sensation is not pleasant and is present all the time. So, unfortunately, BCAA's don't seem to be my answer, but I have included the above as RLS is not uncommon in CFS patients, and someone might benefit from it. Note also in the earlier days, amino acid supplements were given to, and of benefit to some CFS patients.

However, if anyone knows what to take for the tingling/burning symptoms, I'd appreciate hearing.

Ann S
Brisbane, Australia.

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My aunt has had RLS since I can remember, but over the last few years it has gotten worse.  She was always very active, but then she just kept getting weaker and weaker.  And then leg pain was moderate she was up all night but could handle it.  She went to an neurologist and he put her on Sinemet trying every way you can think of with this medication.  And putting her on every other Parkinson's disease medication to boot.  

Nothing helps her Mirapex, Requip, Comtan and toooo many others to mention.  She was taken off of Sinemet and that was horrific the withdrawal was horrific.  Then they started ECT treatments.  And after all that the doctors put her back on Sinemet. Her augmentation again is horrible it doesn't last long she takes 25/100 every 4 hours.  She takes Lorcet every 4 hours to try and make the Sinemet last.  

She has panic attacks, hallucinations,  fits of agitation.  I tell you it has been a nightmare for 3 years.  I am her niece, and if I hadn't loved her for the person she was before this horrible disease I would have bailed a long time ago. She goes to Cleveland to a world renown doctor.  In December, all her doctors wrote letters that nothing helps.  

Maybe a nerve block or implant might work?  Has any one had any success with this?  I also heard reflexology was helpful.  Anything you can tell me would be useful.  To all of you out there suffering you are not alone, you are not crazy!  God Bless each one!

Beth

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About a year ago, my doctor put me on 2 40 mg tablets of Celexa a day. She also gave me a prescription for Trazadone, 1-2 tablets a night as needed. I was feeling very overwhelmed and tired. I had no energy to do anything. At first, I did feel better. I had described to her the feelings in my legs at night and she asked me if I thought I had RLS but I said no because I didn't know what it was. 

After reading all the information I can find on the internet I am sure I have RLS. I hurt my back a few months ago and she gave me a prescription for Ultram. When I take this I feel wonderful. I have energy and I feel alive. I have no need for Trazadone at night and sleep so well. I know I am taking too much Ultram, up to 8 of the 50 mg tablets a day. 

What would you suggest for my treatment?

Thank you,
Karen R.

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Thank you for all you do,
Pat

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My doctor gave me amitriptyline 50 mg today.  In looking through the different letters in this site, I have not seen anyone taking these before.  The doctor did say that these were better than Mirapex or Requip.  

Do you know anything about this new pill and are there any adverse side affect I should watch for?  Also, I am taking 25mg of Vioxx per day (mornings only).  Are these compatible?

He also has Meniere's Disease and has to take 2mg of valium three times a day. I feel that this may be why he got a bad reaction to the Neurontin. 

Sincerely,
Jennie Bell

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My doctor is helpful, though not extremely knowledgeable (I know this from the info I have obtained from you and others on the Internet)  He has tried Ultram (it makes me very nervous without much other results), Darvocet N (which helps a little) and occasionally Vicodin (which works fine, usually 1/2 of 5/500 and later the other half if needed).  

I was diagnosed with RA in my early 20's but it has only caused occasional flair ups with a small amount of finger twisting.  I can lay on my right side and my right leg will draw (all by it's self) off my other leg and to the left.  I call it "toeing in".  I have had insomnia since childhood and have tried various benzodiazepines but am afraid of dependence.  I just know I'm tired of the whole mess.  

I still work as a secretary in a hospital in a very stressful job.  The muscles in my neck and back just spasm so bad at times I want to throw up my hands and quit but I need to work and I might add, want to as long as I can.  I'm sorry if I have taken up too much of your time but wanted to give you the "whole ghastly story".  

Any suggestions will be very much appreciated.  (I do take Celebrex 200 mg bid for the arthritis which I am sure includes osteoarthritis now).

Thank you,
Joan B.  

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After this last surgery, gall bladder, and as I was waking up in surgery, no leg problem, but my stomach felt as though, I had severe RLS where the Laparoscopic surgery was done. The doctor kept ordering Bentyl to be given intravenously, and the more Bentyl I had, the worse the symptoms, and the worse the symptoms, the more Bentyl I was given. I had told my surgeon about the RLS, and being a surgeon, I am sure he knew very little about RLS. 

If I said anything to my mom she would tell me it was asleep and to walk around. I have had to leave movies countless times to get up and walk around because the feeling was so intense. I read on your sight that the syndrome gets worse with age, which really scares me because my problem has always been significant and I usually only have it in my right leg. 

I don't go to bed until I am so tired that I know I'll be able to fall asleep because I dread knowing that if I lay there my leg will bother me. I need some help...where do I start? I live near Cleveland, Ohio and I've never really gotten my problem "checked out". 

Your help would be GREAT. 
Thanks!  Sincerely, 
Somer M.

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Do you consider PLMD and RLS to call for different medications?  I have been of the impression that what will work for one will work for the other. Newt  in Portland

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My doctor prescribed Elavil to begin with and it has not helped at all.  My other symptoms are numbness in my arms and I wake up feeling sore especially in my legs and around my neck.  My mother suffers from "burning feet" and Peripheral Neuropathy.   I don't know if a genetic relationship could be part of my problem.  Do you have any suggestions? 

Rick,
Charlotte, NC

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So following your email, I asked her to prescribe Ultram and Parlodel.  Parlodel is the first drug she wouldn't prescribe citing bad side effects.  I did try Ultram - it works somewhat for about six hours but leaves me jittery. I tried taking another when the RLS woke me up in the middle of the night but that just compounded the side effects although it was great for the RLS. I'll only stay on it if I am desperate.  Any other suggestions?  

Thanks again so much.  It is wonderful to have someone I can write to about this problem.

Ronni W.

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These awakenings seem to be occurring during my REM sleep because I can vividly recall my dream and my upper body feels completely paralyzed when I wake up.  It is often difficult to get back to sleep from these.  Could this be related to the PLMD?

Kevin O.

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At our last support group meeting I asked for a show of hands for those who had been tested for ferritin and at least six people responded.  When I asked how many had paid for that test themselves, nobody raised a hand.

What is your approach to this obvious diagnostic tool?  It seems to me that, when anyone has been diagnosed as having PLM or PLMD the ferritin test should be run immediately since correcting a low level of iron can, in many cases, effect complete relief without resorting to medication.  Does Medicare now recognize RLS as a disorder that it will cover?  Specifically the ferritin test?  If not, and my doctor is still correct, what can be done to convince Medicare that this is an extremely important test?  From a support group leader point of view this is vitally important since we tend to recommend the test but my doctor cautions that, if Medicare still doesn't accept it for payment, it may still slip through their screening process but later be picked up in an audit and thrown back to the patient for reimbursement.  I would hate to be blamed for a recommendation that led to this embarrassment! Newt Hagar

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Last summer I had back surgery and was put on about a couple of weeks worth of Percocet... What a miracle drug!!! Not only did it relieve my pain from back surgery, it gave me the best sleep I've had in years!!! I would take the medication and be asleep about 1/2 later... I would wake up feeling rested and refreshed and I wouldn't feel at all tired during the day, something that is VERY rare for me.

Unfortunately, when I ran out of Percocet, my doctor wouldn't refill the prescription because of how powerful a narcotic it is. Anyway, the quality of sleep I got while taking this medication prompted me to seek out other medications that might help me.

I tried taking just Ambien, but even though it made me really tired, I still couldn't go to sleep easily because I still *NEEDED* to move my legs and feet. Yesterday, I started taking 1/2 a pill of Sinemet (25/100).  It seemed to help a little last night.   I'm going to stay on this dose for another few days and then increase to 1 pill if my symptoms are not completely gone.

I just had a blood test to determine my "iron" levels and they are normal, so iron therapy is out for me.

I am really hoping that Sinemet is going to do the trick for me, but I have a feeling that nothing is going to be a good as Percocet... oh well...

Steve

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Needless to say, I am very worried.  I suggested she take a Xanax before she goes to bed, which she has a bottle of from a previous bout with this condition, but she is afraid she won't function in class early the next morning.  Aside from the stress, I was trying to think if anything changed medically in her life.  Then I remembered that she recently went on the birth control pill about two months ago.  

Do you think there could be a relationship between these symptoms and the pill.  Also, I have read that calcium and magnesium can help this condition, that it might be a deficiency of these minerals in the body.  What else do you think might help her.  She said she can't even exercise at the gym because her leg feels like it doesn't belong to her.  She said the only thing that helps is punching it or extreme pressure on it.  

It is so frustrating when you can't help your child.  Also, she had third stage Lyme Disease from 1989-1995, which I thought she had been totally recovered from.  Do you think this could be a result of the Lyme disease.  So sorry that I have so many questions.  Please respond as soon as you can.  

Thank you so much.  
Sue

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Claire

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I am in good health except for RLS and I take Mirapex seven days a week for it.  My doctor ordered a CBC and I requested that the serum ferritin level be checked also.