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I tried to do some research about what we might be able to do about it. I read about calcium/magnesium and how that would help some people so he tried it and it WORKED! However, that was short lived. Within about 3 months he started getting symptoms again and each night he would complain that it was "the worst ever". He would almost be in tears and would talk of wanting to kill himself (not serious, but you probably know what I mean).
Well he finally went to the doctor and they prescribed Sinemet and told him to continue taking the calcium/magnesium. Wow! That was like a miracle drug for him. He slept so soundly and wasn't sleepy the next day etc. Well, after about 9 months or so, he started getting symptoms of RLS during the day while he was just sitting there trying to watch TV or whatever. I guess it was augmentation, so after about a week of this happening we went back to the doctor and he prescribed Neurontin (300 mg).
He takes one before bedtime and this worked even better than the Sinemet. He was so happy to have something that worked. Well he has been on this about 1 year and now he is getting RLS symptoms every night again. It has been every night for about 3 weeks now. He has found that it is somehow correlated with the bottom of his foot itching. He has to go outside and rub his foot on the concrete and cool off outside sometimes for an hour or so before he attempts to come back to bed. SOMETIMES that helps.
This is so frustrating for us because now we don't know what he should do. One time he tried taking 2 Neurontin and he got sick the next morning. Do you think increasing the dosage of Neurontin may help him? Maybe 1 1/2 pills (450 mg). Should he start taking it throughout the day maybe? Or do you think it is time to go back to the doctor to try ANOTHER medication? I feel so sorry for him as this problem seems to take over his life.
My doctor was never big on prescribing opiates even though they seemed to be the only thing that worked, so I felt hopeless. Recently I saw on a website several RLS sufferers mentioned different over the counter solutions. My RLS had been worsening by the day and my doctor was out of town so I ran out and bought all three of the items and miraculously I had almost immediate relief. It's still not gone but I am able to get off Ambien and back on Clonazepam for now. Here is a list of the items I bought at the drugstore:
G. Ryan 46, Female
I was just informed that Eli Lily no longer makes Permax in the .25 mg strength. Therefore they gave me (at my pharmacy) the .05 mg strength. I formerly took 1 .25 each day and now they have informed me that I need to take 2 and 1/2 tablets of the 0.5 which will cost me about $150 monthly whereas the .25 cost me about $50 per month. Is there any alternative that you can help me with.
Patricia F., Safford AZ
One of the reasons I avoided seeking treatment for so many years is I thought the symptoms made me sound nutty and I was embarrassed. Finally, after surfing the internet regarding insomnia and finding this and other sites, I figured out this summer I had RLS and went to a sleep disorders clinic where I was diagnosed with RLS and started on Mirapex which was titrated up to 1 mg at bedtime. The Mirapex really helped my RLS although insomnia was still a significant problem.
The smart sleep specialist I went to also insisted on drawing my ferritin level, which came back in the 20s (I was mostly vegetarian for years and am female with regular menses ). When my ferritin level results came in (my hemoglobin and hematocrit were within normal limits), my sleep specialist doctor had me start Slow-Fe Iron Supplementation about 3 months ago with lunch and dinner.
One night a month ago I fell asleep before taking my bedtime Mirapex when my husband and I were in bed at 8pm and my husband didn't wake me, and for the first time in 4 years or so I slept the entire night without waking. Since that night a month ago I have stayed off the Mirapex and I sleep well most every night and my RLS symptoms are now minimal. All I am taking is Iron supplements! Have you heard of other cases like mine where very very severe RLS is almost completely cured by iron supplementation?
This is a miracle, I was a walking zombie from insomnia for years and now sleep well. I am very happy with the sleep disorders clinic I went to.
A few months ago I began to notice what I thought to be side effects from the medicine. I was having very low blood pressure, feeling faint, a lot of fatigue in the day (sleeping great at night), pressure on my chest with shortness of breath, and sometimes a difficult time swallowing. After many tests I have just been told that I have a heart valve abnormality called Mitral Valve Prolapse.
Today I will be going in to receive a 24 hour heart monitor to keep track of the activity. I was told by the cardiologist that it appears to be benign, with no blood back-flowing, but still doing some test at this point. My major concern was that I read on a Mayo Clinic Research Web page about some patients that had never been diagnosed with MVP and now have and was also noted that they were all being prescribed Permax for Parkinson's disease/RLS.
I have since been switched over 1 week now to Sinemet, to see if some of the symptoms were also intensified due to the Requip also. I have also read that some people should not be on these medicines if they have an arrhythmia .......is this something I should get a second opinion on??
This past year, my doctor started alternating my pain meds. I asked her to because of what I read here. I take Ultram for 2 weeks and then 3 days of Vicodin. Here's my problem- I've always taken my Ultram at 10:30 in the morning. The past couple years my symptoms have started earlier so I now take it at 8:00 ( that's if I'm moving around). If I'm sitting at the computer I have to take it at 6:00 or I can't sit. Even then, I have a crawly sensation that's not unbearable but it is uncomfortable.
It concerns me because in the past if I took my dose of Ultram, that took care of any sensation at all. Do you think my RLS is getting worse or I'm I developing a tolerance to Ultram? The crawly sensation even after I've taken the Ultram has only started about 6 months ago. I'm very upset about this because I don't have any other options as to medication. I've tried all the Parkinson's disease drugs for my daytime RLS with no success. What should I do?
I know I have RLS, sometimes I get it in bed but over the past couple of years I have been getting it mainly while traveling either by car, train or airplane. Flying is the worst. The "tickling inside my bones" eventually actually creeps up into my arms. It makes me physically sick to my stomach and very irritable.
Some say vitamin B helps, also the herb Valerian but nothing has helped. I have a long flight coming up and I got some valium from my doctor. I hope that helps. Anyone got any suggestions. If I get up and walk around it goes away but the minute I sit down I start to go crazy with it again. I am 41 years old.
Please give me your expert opinion on my med. problems. I have been on all of the RLS drugs and find that Permax is the most effective for me. (I have been on it for l year now.) I am worried about the side effects regarding the heart problems. Both Mirapex and Requip cause insomnia for me. What would your suggestion be for me.
I thank you in advance. Your advice is greatly appreciated,
Rosemarie (65) Canada
Just over a year ago, my wife was in an automobile accident. She suffered moderate head injuries including severe lacerations to the back of her head and a concussion that affected her for over six months. Several months ago I noticed the first symptoms of RLS which is the repetitive kicking of her legs at night.
Many nights I counted the leg jerks and noticed that they are constantly about 12 to 15 seconds apart and continue for most of the night or at least until I fall asleep. Now she complains of hip and joint pains whenever we take a car trip of more than 1/2 hour.
I am one of your RLS patients. I take .5mg Mirapex each evening and find it relieves my symptoms almost always. I am also on HRT. I read, and my OBG confirms, that Neurontin may relieve hot flashes. I have taken it in the past for RLS and it also does well for me. What would be the drawbacks to replacing Mirapex with Neurontin in an effort to get me off of HRT without experiencing the debilitating hot flashes? What are the side effects of Neurontin?
I am also concerned about the long-term effects of these medications. Will my body make less serotonin if I stay on the meds for a long period of time? does it get used to doing more with less and less? Thanks for your help.
My symptoms are always the same. I am either relaxing or just falling asleep when I feel a peculiar sensation in my shins and feet which is suddenly followed by a feeling that I can only describe as an electrical jolt zooming down from my knee through my shin into and under my foot. This happens over and over with 10 second attacks lasting for 2 to 6 hours. I usually don't get to sleep before 4 AM. It is an overwhelmingly uncomfortable sensation and like others, I kick my legs like crazy, run them under hot water, hit them ,walk, run, anything to try to get rid of the feeling.
I've tried muscle relaxers--no good. A point of interest--I recently had a kidney stone problem and was taking Percocet for pain. I HAD NO RLS WHILE ON PERCOCET. But if standing on my head and eating coconuts at bedtime is the answer, I'll do it. I'll let everyone know how I make out at the doctor's tomorrow.
Good luck to you all!
Last night was our support group for RLS. We had Dr. James Harrison as our guest. He is our advisor. He advised me to take two .25 mg. each Mirapex at night when I go to bed. I did that and it worked great. However, I have allergies and need an antihistamine. Are there any antihistamines that don't make RLS worse?? What woke me up last night was a clogged nose and sinus.
Thank you so much for your help.
I did not realize a connection until recently. I was put on Estrace vaginal cream for vaginal dryness. I now think that my bad nights are in proportion to how much Estrace that I use. Do you know if others have had this problem? Also, do you know of a similar product that might not bother my RLS?
I seem to be developing the same thing in my wrists/arms lately, but because it's easier to move them than it is to get up and walk around. It doesn't bother me as much. I have RA, and developed it at the same age, too. I do not want to go on any other meds for RLS, and take only Plaquenil for RA, but the Niacin seems to be working well.
Have you ever heard of anyone else using this? I've suggested it to several other people, and they all have had the same immediate results.
I take .065 Mirapex before bed with a 100 Trazadone and a .25 Xanax. In two hours I'm awake. Last night I took another of the Xanax and in 2 hours wide awake again. After reading your web page it sounds like Ambien would be a good next try. I'd like to take as much info to my doc as possible, Can you help?
I am a 56 year old female and have had RLS all my life. My mother had it but was never diagnosed, my daughter has it and now my 4 year old grandson has it. I can remember moving my legs back and forth as a child until I fell asleep. In 1978 it really set in but no one seemed to know what it was so I lived with it until 1985 when my family doctor prescribed Klonopin ½ mg. before bed. What a relief, I could finally sleep.
I have taken Klonopin since then and have had great success, but in the last year found that when I increased the dose to 1 mg. if my legs got really bad and continued with that dose for a few days my legs would ache the next day. When I dropped back down to ½ the aching would go away. Then the Klonopin seemed to gradually stop working. The other problem I had with the Klonopin was that I could not get health insurance or I had to go to “guaranteed issue” which was $900.00 a month.
I went back to my doctor and he took me off the Klonopin (weaning me off over a period of 3 weeks) and put me on Sinemet. At first it worked fine but as the last two months have gone by my RLS has gotten progressively worse and I keep taking more pills. I also feel very lethargic most of the time. I have tried Neurontin and had no luck. I guess I’m trying to figure out what my next course of action should be, my doctor is very receptive to whatever I want to do as a treatment. If you have any suggestions, they would be very appreciated.
Thank you and sleep well,
I am 48 years old and had a total hysterectomy one year ago. The doctor put an estrogen patch on me and gave me Premarin for HRT (Hormone Replacement Therapy). As soon as I went home and quit using pain medication, I noticed my arms, legs, knees, ankles were crawling, driving me up a wall and I was unable to sleep at all.
After several attempts of finding out what the problem was I discovered it was RLS, my doctor is giving me Mirapex and Ambien and an anti-nausea medication. I have been continuing to take the Premarin. Then I read in some RLS literature from the Foundation that another women complained that she thought the Premarin was causing the RLS. I stopped using the Premarin a week ago without any real side effects.
I tried to cut back on the Mirapex I use 1.75 mg, three times a day. That's what it took to relieve my severe symptoms, but the RLS is too severe still. Do you have any information as to the truth that using HRT medication could be the cause of RLS and if after some time off of Premarin, that my RLS may go away.
our thoughts and advise would be greatly appreciated.
I was diagnosed with PLMD this summer, three months before I fell pregnant. I take Mirapex ( Pregnancy Class C) and tried to go off it after my neurologist found out I was pregnant and asked me to stop taking it. I could not stop though. Without Mirapex my PLMD is so severe that I wake up every two minutes all night long and get sick all the time and can not function at all.
My neurologist has stated that if I do not get enough sleep I risk having pre-mature labor. I am now 22 weeks along in my pregnancy and have to take 3.5 mg per night just to get a little relief. I sort of got by on .5 mg pre-pregnancy. This dose of 3.5 mg leaves me tired and nauseous and stuffs up my nose so bad (I can't sleep when my nose it totally stopped up) that I have to use OTC nose spray in addition to Flonase and nasal irrigation to be able to sleep.
My Neurologist does not like the idea of me taking so much Mirapex so he prescribed me Ambien ( Pregnancy Class B) 5-10 mg at night and advised me to back off on the Mirapex as much as possible. I've taken 10 mg Ambien for three nights now and at most it gives me three hours sleep. I guess I'm one of those people that is not really helped by Ambien.
My serum ferritin level is 20 that is up from 14 this summer. What other options are there for me? I am getting so little sleep that I can barley function during the day and I am catching every cold, flu, virus and bacterial illness that comes around. I've already needed one round of antibiotics this winter for a bacterial illness that I could not fight off. Most days I don't have the energy to shop or go out, even if it's to see my doctor.
From reading your website I am absolutely amazed at the number of men who suffer from RLS. I am a 5th generation female sufferer and have had severe RLS for 50 years. I don't see movies or plays and could never sit through one of my children's concerts. I can't stand in line at Disneyland or even go shopping in the mall. I have discovered, however, that there may be a link between post polio syndrome and RLS.
I had paralytic polio when I was 16, within weeks of receiving the vaccine. The doctor's tell me this is why I was only paralyzed for 2 weeks as the vaccine did a partial job of protection. I am curious about the possibility of their being connected. The only pain killer I take for it is aspirin but I have developed bleeding ulcers and just underwent my 3rd blood transfusion. I did buy a Jacuzzi but the relief is temporary and sporadic.
I can't seem to find a doctor who has any sympathy or understanding.
For about three months before surgery, I got only 2- 3 hours a night. I had surgery two weeks ago and all went well and I was not bothered at all with the RLS for a week and a half and now the demon is back. I have a hard time resting during the day because of the RLS and I am awake a lot at night with the RLS.
When I had pain and I was taking Vicodin, that seemed to help but I don't want to get hooked on Vicodin. The doctor I go to doesn't know much about RLS. I asked if he would give be Requip and he said there were too many side effects. Can you give me some advice as what to do?
I have severe RLS and was walking the floor all night long. I was on Klonopin for 10 yrs and then came the "augmentation. "Horrible is an understatement". I went to 8 different Drs who had no idea on how to treat it. My legs were black and blue from hitting and banging them to get relief.
I found and read an article about restless legs from the RLS Foundation of which I am now a member. Bless them for their help. I am now and have been on Mirapex for nearly 3 yrs. and so far it has been a lifesaver. I pray every night that it doesn't fail me. I would like to know what I can do to take the burning and aching away. I take100mg of Neurontin every night but all day long I get the burning and aching feet.
Thanks so much for being there,
On 10-18-03 Linda H. had a article on Niacin. It did not work for me, made the RLS real bad. I am a male, 63 years old and have had RLS for 10 years that I have been seeing a doctor for. Two month ago my family doctor wanted me to start taking Fosamax for Osteoporosis, 70 mg once a week and calcium 600 citrate + D two times a day.
Three days later my Neurontin quite working, took a week off the Fosamax and calcium . The Neurontin started helping me sleep again. Tried the Fosamax with calcium 600+d two time a day a week later, not any better. Don't know if this information will help anybody.
I have read that there are frequently neurological effects with Celiac disease, notably ataxia . It has also been noted that a high number of epileptics have celiac disease. Should it therefore be routine for PLMS sufferers to be screened for celiac disease? Of course it is early days to tell if a gluten free diet will affect my PLMS but I will keep you posted for your information and the benefit of your readers.
Best wishes from Ireland,
Thank you in advance for your advice,
Finally a neurologist suggested Mirapex which he felt was the best medication for anyone with heart problems. I'm only taking .125 two times a day. In the beginning it helped totally. I had no symptoms. However, recently I've had some numbness in my feet which is particularly bad at night. Could I need a heavier dosage or take it more often? As usual I'm confused.
I don't want to waste my time if chiropractic care has little benefit. Just wondered if some of your patients had given it a shot.
I enjoy occasionally checking this web site for new and updated information. You had suggested to me to try the Parkinson's Disease medications. I'm not ruling that out, but the only reason I didn't was because I was told by my doctor that I would feel spacey during the day. I am in client relations and travel in a company car several days a week. Plus, I have to meet with customers; take them to lunch; , etc.
After Klonopin quit working--it had worked for five years, I took Neurontin and it didn't work. Then the doctor put me on Elavil. That was my experience in feeling spacey, plus the dry mouth was horrible. It really didn't work either--I still took Ibuprofen and a Xanax with it. I took myself off the Elavil and started taking four 200 mg. ibuprofens per night with a 1 mg. Xanax. My doctor is fine with it. THIS COMBINATION IS WORKING GREAT!!!
My family is afraid I'll get addicted to the Xanax, even though I tell them I don't take it to feel good. I take it and then I go to sleep. I've tried reducing the amt. of ibuprofen and tried doing a .50 Xanax. It's very ironic that it takes exactly what I'm taking to work. I hope this is an acceptable therapy because I really can't afford (with the kind of work I do) to take medication that alters my mental state. The Elavil definitely did and I was afraid the Parkinson's disease drugs would, too.
P.S. I saw a letter a woman had written about quinine. I am a social
drinker and I find that when I drink a few vodka and tonics, I don't have to
take any medication. Tonic water contains quinine. I have not tried
drinking just straight tonic, but I heard of a lady that does every night
and it has really helped her.
Would like response about the ibuprofen/Xanax combination.
A Reply from Sallie R.
I'm a 47 year old mother of 5 boys. My history of RLS sounds like many that I read on your site. I fought using narcotics for years, but finally broke down and found a good neurologist with a lot of knowledge about RLS. I've been on the same dose of MS Contin for 10 years.
Now, enters my son.... My son messed around with drugs and got hooked on heroin. He used it for six months. We took him to a rehab and we've had him home for two months (clean). The problem is that my son has the worst case of RLS I have ever seen. I thought I was bad, but my heart just aches to see him suffer. It goes around the clock. He may be a couple hours sleep if he completely knocks himself out with some major strong sleeping pill. During the day, he suffers and becomes anxious because of the legs, and now arms.
He's now talking about going to a methadone clinic because he can't take the leg problems. What do we do? I don't won't my boy on methadone. and I don't want him to be stuck with a long term opiate drug, (like my MS Contin). He's too young and immature to handle them without getting out of control. He's been on Mirapex for three weeks. It isn't helping.
My question is....will his RLS go away with time? Is this part of the healing process from the heroin, or is he basically stuck with this syndrome for the rest of his life. Did heroin bring this on prematurely? I know it's hereditary, but could the heroin mess up the ability to make natural opiods, which could cause the RLS??
Please help... Whenever I tell a doctor he's a former heroin addict they treat him like a second class citizen and tell him to take an aspirin and buck it up. (I forgot to mention...he hung himself last week, but was unsuccessful, ended up in hospital a week.). He said he couldn't stand it anymore and he didn't want to be a loser on heroin because he knew how bad it hurt his family.
Should he do the methadone program.. would slow acting MS Contin (like mine) be better, or will get get better because of his youth. My RLS didn't peak until my 30's.
Let me introduce myself as a person afflicted by RLS. I have gone through lots of sites and read many documents on it. I have been suffering from RLS for about 7 to 8 years and have tried different methods to get relief from RLS. After a lot of trial & error methods I have found that certain postures in yoga and practicing pranayama has given a lot of relief to me which I would like to impart to those of you who are suffering from RLS.
As you all would be aware yoga is great for the mental and physical well being of a person. I have tried jogging & massaging with ayurvedic oils but could get relief only temporarily.
I am in my mid-40s, which is the age that many people tend to develop RLS, and recently I had a bad case of RLS and could barely sleep at night for months. I know how dreadful RLS is and I am happy the vitamins work. I recommend trying vitamins before trying any kind of prescription medication, since they are more natural and won't have the side effects that medication sometimes has. It worked for me and I am much happier now that I can sleep at night.
What are the possible negative affects of this medication cocktail on my young son and how soon should I expect to see improvements? What should improve first and is is possible that the sleep disorder is the cause of the mood and impulsivity issues?
I have found that if I take on third of a hydrocodone 5/500 tablet and only 15. mg. of Permax I not only have no RLS symptoms but I also go to bed very relaxed and sleep very sound. I wake up felling better than I have felt in many years.
Is this alright to do once or twice a week just to get really good sleep?
I'm great fan of yours and thank you from the bottom of my heart for all of
your dedication to those of us with RLS. I have read your letters for years
and learned so much from them.
I am 66.......have extremely severe RLS for about 25 years. I am finally under rather good control after my doctor suggested Oxycontin to keep me from waking up after a few hours and taking more meds. I was afraid of this at first, but seem to be doing fine with it. I find that I am very depressed and even though I am taking 150 mg. of Wellbutrin once or twice a day, I still feel quite depressed at times. I'm wondering what you consider the best antidepressant for me to try that might not exacerbate my RLS. Zoloft did not help me very much in the past.
Thank you for your time and effort....
I have been reading letters on your website regarding RLS. I experience that feeling that people have mostly in my arms at night. I work shift work, and I have a hard enough time trying to sleep as it is. When I lay down at night, my arms start to have that feeling. Creepy crawly sensations. I feel like I am going crazy. It prevents me from seeping at night at all sometimes.
I do experience it in my legs occasionally, if it gets bad enough, but mostly in my arms. Can you help me diagnose this. Do I have RLS or something else. I have read all the letters, and few people experience this in their arms, its mostly in their legs.! Does RLS start in the arms first , and progressively gets to the legs? I need some relief, as I am too tired to function every day!! thank you , I look forward to your advice on this.
As my symptoms start earlier, I'm assuming it will probably get even worse (I am 51 years old). My question is - if I have to rely on pain medication 24 hours a day with enough doses to cover day and night instead of just night, how can you safely take enough to cover the 24 hour period. I forgot to mention I alternate Ultram with vicodin(2 weeks Ultram, 3 days Vicodin).
Is it possible to use methadone safely for someone with 24 hour a day RLS. Would it be safe to add another dose of Ultram a day?
I have had Periodic Leg Movement Syndrome since I was 19 or 20. I have been on Klonopin since I was 23 ( I am now 48). The Klonopin is very effective for me, my only complaint is I build up a tolerance about every 5 months and have to go off it for two weeks. The withdrawal symptoms get to the point around the second week that I can barley function as a normal person. I have to take at least a week out of work during each of these drug holidays.
Does anyone have any suggestions on what I can do to extend the time between holidays or how to reduce the withdrawal symptoms?
A Reply from Winnipeg
Sleep has always been elusive to me. Do RLS suffers also suffer with twitching eyelids? At various times you can actually see my eyelid moving back and forth very quickly. Do you think I risk augmentation with the dosages I am taking right now.
A Reply from Winnipeg
Are you saying that I should consult with my doctor and ask for Mirapex or Requip? If so I hope he will be open to this suggestion. As you know, not that many doctors are all that knowledgeable about RLS. There are times where I have not slept the night before and when I have tried to sleep in the afternoon my RLS starts as soon as I lay down.
I also experience RLS symptoms very early in the evening at times if I am sedentary for any length of time. The amount of Topamax I am taking is 25mg a day and will be increased up to 50 in two weeks and I have just started to take it. I really hope this won't make things worse. Any suggestions as to what I should do if my doctor doesn't want me to try the Mirapex or Requip.
A Reply from Winnipeg
I went to see my doctor yesterday about Mirapex. He was concerned that I might fall asleep while driving because there is some sort of warning regarding this issue. He agreed to put me on Permax to see how that would work. I took it last night and after taking the 1/2 tablet the lowest dose I had to take another one because it wouldn't stop the tremors. Finally they stopped but I could not get to sleep even though I was really tired.
Do you know if Permax causes insomnia? I had to take a tranquilizer to get to sleep. The good news is I have got an appointment to see a Neurologist on December 10th 2003. Any advice as what to do about the sleeping problem until then?
It has worked very well overall, but I have never been able to adjust to the mild evening nausea and daytime drowsiness I feel. I often get especially drowsy while driving, and I'm in my car a lot. I have tried taking only the Mirapex for up to 10 days at a time, but the side effects remain and the RLS occasionally breaks through at night. I have tried taking only one extra-strength Vicodin at night without any Mirapex, and this does not produce any side effects. Unfortunately, the RLS still occurs roughly 50% of the evenings when I only take the Vicodin. When I take both, I am free of the RLS with certainty but still experience nausea and daytime drowsiness.
The problem I now face is explaining this situation to my doctor. He may feel the higher dosage of hydrocodone is excessive and potentially addictive, I just don't know. I have already tried a variety of other drugs, including Klonopin. These have not proven effective for me. I don't want to run the risk of having what has worked in the past for me suddenly taken away, yet I'd like to have my doctor aware of what works best in my case.
I realize the Vicodin issue may be a sensitive one for my doctor and for me in terms of long-term treatment, but the 1.5 extra strength Vicodin plus 0.25 mg Mirapex is what seems to work best. I never take opiates at any other time for any other reason, including root canals, back pain, etc. I only take it at night for relief of RLS. For that purpose it has been a miracle.
So, what do I do? Tell my doctor so he is aware of how my RLS is responding to this change in treatment, or just continue with what I've been doing over the past 5 years and live with the side effects? It seems honesty is the best policy, but I must tell you I am anxious that he might change my treatment altogether. I don't think I'm ready to begin fighting this battle all over again with a new set of drugs.
Thanks for any insight and advice you can provide,
I've written to you before and I'm sorry to bother you again about the same subject but I am really scared. I have severe RLS 24/7 in my legs, arms, shoulders. I take Ultram 200mg a day for 2 weeks and then 3 days of Vicodin. I take Mirapex and Neurontin at night only, because they knock me out.
When I take Vicodin, it takes 50 mg a day to control the RLS. According to the treatment pages, you should only take 40mg a day. I'm on a fairly high dose of Ultram and I'm exceeding the recommended daily dose of Vicodin. I'm 51 years old. If the RLS gets worse as I get older, I'm worried about what I am going to do since I'm taking such high levels of pain killers already.
Could I be getting tolerant of pain killers in general? Have you ever had anyone being treated with these types of drugs get to the point where they just stopped working for them? Since I only take the Vicodin 6 days a month, I don't understand why the recommended dose isn't enough to control my RLS.
The only thing I can think of is a tolerance problem starting. That's why I'm so scared. I have no other alternatives to fall back on if I get to the point where I exceed all the daily recommended doses and if they quit working for me then.
Please tell me what I can do,
The information and advice on RLS given on this web site is for educational purposes only. None of the advice, information or medical treatments should be followed without the supervision of your medical provider. The information presented on this site is not a substitute for your doctor, but should be used to help you discuss your RLS problem with your doctor. Do not undertake RLS medication treatment on your own! Please seek qualified professional medical care to help treat your RLS symptoms.
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