Restless Legs Syndrome
9,896 members6,082 posts

Going Crazy!!!!!!!!!!!

I feel like I am going crazy..... nothing helps my RLS.........nothing. I have tried everything, cold/hot packs, tens machine, heat creams and sprays, GABA, magnesium, pramipexole, tramadol, muscle relaxer......and the list goes on. It shifts from one arm to the other, one leg to the other.... then on a great night I have it all over my body. The only thing I have found that works right now is being in the pool, but I cannot live in a pool. Even as I write this at 6:34 am my right arm is crawling, and will be all day, I suspect. Will not be the first time. Any advise????? Because I feel as if I am going crazy.... night after night, day by day. I have been on pramipexole for several years, only taking it when I am under attack, now I have read that after taking it for several years it can worsen the RSL.

15 Replies
oldestnewest

Sorry for your troubles.

Have you read up all the posts recently by people in your situation?

Please do-- you are not unique and we have given the same advice constantly.

Check your triggers, iron levels, medications and diet.

Something is setting you off-- it needs your research to find exactly what.

Good luck.

2 likes
Reply

Thank you... went to dr today and asked for all the blood work I saw people talking about.... asked for the neupro patch and will be starting that..... I am very hopeful now!!!! Somethong has got to change. I just cannot handle this anymore

2 likes
Reply

Neupro is a dopamine med, so what dose did he give you?

Reply

To start is 1mg.... then up to 8mg over time

Reply

Lalalake, I really hope that the neupro patch works for you. You sound like you really need some relief. I feel mean posting this as it is likely to take away some of the positivity you are feeling BUT your doctor is miles off the current view of rls experts when he tells you to go to 8mg with neupro. That is MUCH too high and will lead to terrible problems down the lines. Neupro is a dopamine agonist drug in the same family as mirapexin (pramipexole) and will eventually (possibly quite quickly) cause exactly the same problems of worsening your rls as mirapexin. You should not go higher than 3mg. In your shoes I would not go higher than 2mg. Do some research about it. All experts in rls now tend to move away from dopamine agonist drugs completely, particularly if one has been tried and has now failed which is the case with you and mirapexin.

By all means try the neupro and I really hope it works well and for long for you but if you go above 2mg you will make problems for yourself down the line.

1 like
Reply

My dr wasn't the one who recommended it.... I did research on the internet and I found it.... my dr doesnt like to give natcotics.... only ad a last means to an end and maybe not even then. I am very proactive, like i am sure aloy of you are and I will relentlessly search a subject out and then go talk to my dr about it. The website says 1-8 mg.... but after getting the patch I see the up to 8mg is for Parkinson's patients and up to 4 mg for rls... i will keep what you said in mind however.... it has been psychologically draining for me.... i know why people think crazy stuff when under attack

1 like
Reply

You say that you've tried everything, but have you tried diet? I, and others have found that avoiding sugar and high carb foods makes it go away, and avoids medication.

Reply

Hi Lalake, I am so sorry. I know how horrible RLS can be. My only suggestion is to have an iron infusion. I had 5 a week apart and my legs are behaving so far. Or maybe your doctor would prescribe an opioid. With symptoms as bad as yours seem to be he should. Try crying.

Reply

of course, you cannot and should not have an iron infusion, and won't be able to get one, if you do not need it. iron overload will literally kill you in many cases. First you have to get a blood test, get your ferritin level which shows how your body stores iron. And, if someone says "Go out and get some iron, it WORKS!", again must have blood test done. Iron overload can cause blood sugars to go up, early onset Alzheimer's, osteoporosis, heart failure, heart attack, hypothyroidism, and on and on. ironoverload.org is the web site to go to, to get the entire list, and it is loooooong, of things that can go wrong if you have too much iron. A very good friend of mine has hemochromatosis and RLS. So, iron is not his problem, he has to go to the "vampires" every 3 months for a phlebotomy to take out the excess red blood cells. Iron sounds easy, but it is very complicated.

1 like
Reply

Of course, didn't mean to imply that you should get iron infusions w/o blood tests. I had one that showed my ferritin was low and was then prescribed the infusions. With that said, they did work.

Reply

Thank you... got blood work done yesterday....I believe I have primary rls.... lots of family members have it to and I have had it since high teens. I am 45 now

Reply

I was you for 8-9 years. I found Tens made it worse. Nothing else worked. In a mad fit I ordered a Relaxis pad. It cost me $700 and I was furious with myself. But guess what? It worked. I haven't had a real episode for over 5 months. This pad was designed by a doctor who had RLS. It took about 7-10 days to work perfectly. I only need to use it every week or two. The people at Relaxis are really helpful. There is a specific way to use it and they will guide you. You can also rent the pad. I urge you to give it a try. Good luck!

1 like
Reply

I also have a Relaxis pad and tried for over a year hoping it would work. I was recently in a stressful job but I left that one. This time I have been using the pad for about a month and symptoms are getting better. How often did you use it the first 7 days and what level? Maybe I haven’t found the right level. I have also decided to try acupuncture and change my diet.

1 like
Reply

When I use the pad I sit on it for 1/2 an hour using the 2nd level. I then turn it up to the 2nd highest level for 10 seconds only. For some odd reason it didn't work at all well when I initially tried using the pad lying in bed.

Reply

Try 20mg of codeine just before going to bed. 16mg used to work for me, but I have stabilized at 24mg. You will likely find the dose has to rise over a few weeks to retain efficacy. You may find little benefit in the first night, since the drug seems to have a cumulative effect. So do not get discouraged and raise the dose just because it does not work well the first night. After about 5-7 weeks the efficacy declines for me at the 24mg dose, so then I have to abandon it for a week or 2, but then the effects return. I have gone through this cycle about 9 times so far. Gabapentin also helps me, but that tends to make me tired and dizzy even if I do sleep well. So I use that when I can no longer get benefits from codeine. The other key for me is running in place for 11 minutes just before going to bed. That is about 2000 steps for me and it seems to ensure initial comfort from RLS. I try to pound my heals into the ground because I fear that just running on my toes will not shock my legs sufficiently. If I am awakened by RLS later on, I just run another 11 minutes and I almost always can then sleep at least another 2-3 hours without a problem.

Reply

You may also like...