Breakthrough, painful RLS episodes - Restless Legs Syn...

Restless Legs Syndrome

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Breakthrough, painful RLS episodes

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I have started having episodes of painful, restless legs, at night. I am on the Neupro patch 3mg, gabapentin, and clonazepam. All of a sudden my legs hurt to the point if crying, pacing the floor, and feeling overwhelmed with the need to stop the paun. It was once a month, and has increased to twice a month. My doc said there is nothing for these breakthrough episodes. I found oneother person that experiences this. Anyone else, and what helps?

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I have been going through something quite similar, only more often. I take gabapentin, clonazepam, and oxycodone. The oxy being more for RA and fibro pain. I still have terrible pain at night, to the point of tears. Sometimes, and I mean, not always, a warm bath helps. Other times I find nothing at all helps. What is the patch you are on as I'm not familiar with it. My sleep specialist attributes most of my sleep issues to this, but not all. I've had sleep issues since childhood.

jimeka profile image
jimeka

Morning. I too suffer from pain in my right leg due to RLS. It was only near my ankle at the beginning but as I have matured in years, now 58, the pain has spread up my leg particularly in my calf muscle, again like you to the point of tears. I take cocodamols which relieves it for a short while. I have had RLS for 30 years, only to find out it gets worse with age. I also have MS and the docs are quick to blame that instead of RLS but after having had it for so long you get to know your own body. I find the biggest problem of having RLS is getting a professional person who will listen to you and show understanding.

blueeyes5262 profile image
blueeyes5262

Tramodol...Works wonders!!Not a narcotic\

fritzb43 profile image
fritzb43 in reply toblueeyes5262

Tramadol is a low-grade opioid. Many RLS-savvy doctors refuse to prescribe a dopamine agonist and start all their patients on tramadol - this is due to augmentation.

Do yourselves a favor - go to the Mayo Clinic and Johns Hopkins web sites for accurate info on RLS. No supplement will help you. The causes of RLS are well-known and the #1 cause is low iron in a particular area of the brain. Educate yourselves and learn how to search and follow the science. Refuse to embrace junk science, of which there is a ton out there.

beady3 profile image
beady3

So sorry your legs are like that,mine used to be like it so so painfull and tears you wanted to stab them. A bath did help some times I had 3a night,Tramodol was wonderfull been on them for 8 weeks 50 mg a day,they make me so sleepy I find it hard to cope with the day so from today am trying Tramodol with Paracietamol in it which will make it not quite so strong. I would recommend them just try that's all we can do is try. Good luck Beady 3

Lukibird profile image
Lukibird

I have this and found the best relief came from magnesium spray. Don't know why it works but it does for me.

Eileenk profile image
Eileenk in reply toLukibird

Hi Lukibird

How long were you spraying before you noticed a difference? I'm also taking the magnesium spray , daily ( four sprays on each leg ) for a couple of weeks now....can't say It makes a difference...

Lukibird profile image
Lukibird in reply toEileenk

Hello Eileen

After a couple of days it seemed to work. I spray each side of my calf muscles and my thighs then massage it in. I do it about half an hour before bed.

Aw, honey.. it's not fair, is it? It's hard to tell when one set of symptoms ends and another starts when you have multiple disease going on.. and it all hurts the same. It sounds like you are having a hard time coping with everything going on. You have a couple different kinds of pain plus restlessness.. not the same as RLS.. and it's all affecting your sleep.

If I was one of your doctors, I would send you to get an evaluation by a pain councilor to find out just what your needs are. Talking about the entire person and how pain affects your life, and about the challenges that you face day to day both physically and mentally.. it's a good tool for any doctor to use to find out what the heck he/she needs to treat..

You can be given a mound of pain killers to knock yourself out but I found out that once awakened, the pain is there plus stiffness.. so live being knocked out became unacceptable.. and man oh man girl, they have a lot of machines, injections, comfortable ways to move and stretch.. I even had the Physical Therapist do the stretching for me.. I just had to lay still and let him work out the hips and thighs for me.. ultimately, my knee loosened by our 5th visit.. I started walking again.. I am going to venture to say that PROBABLY the pain killers will not be reduced, might even be increased.. during the PT... After a while, it will feel like you are going on a date because it will be your time to fix you with a group of people that are more than willing to help with heat ultrasounds that really get deep down into the tissues to warm them up.. amazing tool..

I wish you luck and hope. Pain councilors are NOT about telling you if you are nuts or not.. they are about addressing some things going on in your life that is important .. and they are communication from and to Doctor sometimes... YES, Antidepressants can be prescribed.. they are good little pills when they are used for pain perception.. or even nerve pain..

Windwalker profile image
Windwalker

The drugs doctors use for Parkinsons seem to be the best for me 2mg of time release requip one at lunch time and 2 mg of requip at 8PM are the main drugs I take, I also have Fibromylgia which it sounds like what you have. We use 5mg of methadone at 5pm and 900 mg of gabapentin at 9pm. This keeps me from having the urge to move (RLS) and the pain is controlled enough that I can sleep some. Not the best, but enough to sleep. Ask your doc to investigate the possibility of helping you with these drugs.

ookla profile image
ookla

When I was on the Neupro patch, my rls got worse. It's a dopamine agonist and a lot of times they eventually lead to augmentation. The only thing that was able to clear it up was tramadol. After I got off the Neupro patch, my rls went back to "normal." Neupro patch, gabapentin, and clonazeam didn't work for me. The only meds I've had any success with have been 50 mg - 100 mg tramadol and 15 mg oxycodone. I hope you find something that works for you.

PetulaW profile image
PetulaW

Sorry to hear that you're experiencing this. The one thing that helped with my RLS is insomnia meds. I take trazadone and it helped tremendously. Also tamazepan. For some reason sleeping deeply helps.

Lukibird profile image
Lukibird

Thanks for this. Interesting reading.

My restless legs has always been painful it started in one bing toe 8 years ago moved up one leg then into the other leg and now my arms and face Iv tried all the brain drugs that turned me into a zombi but now I only take loranzapam and licra I little while ago I seemed to be the only member with painfull RLS but latley there seems to plenty of us and for those of you that don't have painful RLS count your blessings

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