Please help me with RLS and the PAIN

[steve9340]

I have had RLS for many years and it is getting worse as I get older. I have tried Requip, Klonopin, Neurotin, hot pads, ice packs, and IcyHot creams and nothing seems to work. My lower back and legs ache so badly that I cannot sleep or wake up shortly after sleeping. Does anyone have suggestions? HELP!

[badnights]

steve9340, you're obviously suffering badly. But I'm sure you can be helped; an RLS specialist has said that almost all RLS sufferers can find substantial relief in the hands of an experienced doctor.

So my first question is, do you have a doctor who is knowledgeable about RLS (I should say Ekbom disease, the new name for RLS)? Does s/he know about things like augmentation of the symptoms caused by the dopmaine drugs like Requip? Does s/he know about the use of opioid narcotics to treat RLS?

One thing many of us have done is to print off the RLS Foundation's medical bulletin, or the Mayo Clinic algorithm for RLS care (slightly out of date), and actually bring that paper in to the doctor, with highlights marking the points that are relevant to you. It's also a wonderful resource for your own use, to inform yourself of your treatment options. Those papers are the top two links below.

I don't know how much you want to get into it, or if you've already researched it a lot. I have included a number of other references in case you're interested, but don't let that overwhelm you: just use the first one, and ignore the others unless you want more.

My second question: it may seem silly to ask, but are you sure it's RLS? Some people have received an RLS diagnosis in error. Do you have an urge to move that accompanies the pain? Does it go away or improve while you're moving? Is it triggered by sitting or lying still? Is it worse at night? If yes to all four, your diagnosis is probably right. No doctor I've had has ever asked me about the four criteria, which I find interesting (in a bad way).

Next: what medication are you on right now? There are many more to try than what you've listed, and unfortunately it takes time and grief for many of us to find something that works without unbearable side effects. The dopamine agonists (Requip and Mirapex) can have very different side effect profiles, even though they work the same way. Have you tried Mirapex? What happened when you tried Requip - did it help?

Klonopin is not effective against Ekbom disease (RLS) symptoms. It has some anti-anxiety properties and is a sleep aid, but because of its very long half-life it tends to build up in people and cause lingering sleepiness during the day. It's rarely prescribed for EkD (RLS) by experienced doctors anymore.

Neurontin/gabapentin can be helpful but commonly has to be combined with one of the dopamine agonists or with an opioid to be effective. Lyrica and gabapentin encarbil are other anti-convulsants used for EkD.

Low-potency (codeine) and medium to high potency (oxycodone, methadone, many others) opioids are used very effectively for EkD relief. A lot of doctors won't prescribe them because of the percieved risk of abuse, which is really very low in chronic pain patients (and EkD counts as a kind of pain) at least according to the personal experience of some doctors. I'm taking an extended-release version of hydromorphone, but I spent almost 3 years going through other drugs and combinations of drugs that didn't work.

Have you had your serum ferritin levels checked? Ferritin in the blood should be over 50 ng/L, possibly even over 100, for RLS patients. I had a drastic reduction in my symptoms by taking oral iron supplements that boosted by ferritin from 30 to 130. Take vitamin C with the iron; the iron can't be absorbed well without it.

• RLS Foundation medical bulletin
  [url]http://www.rls.org/Document.Doc?&id=2112[/url
  
• Mayo algorithm
  http://www.mayoclinicproceedings.com/co ... b555569081
  
• The RLS Foundation website:
  http://www.rls.org/
  
• A book for physicians who have to treat RLS that is also very informative for patients:
  Hening, Buchfuhrer and Lee, 2005. Clinical Management of Restless Legs Syndrome.
  
• A book for physicians or patients:
  Chokroverty, 2010. 100 Questions and Answers About Restless Legs Syndrome.
  
• A book for patients that physicians could also learn from:
  Buchfuhrer, Hening, and Kushida, 2007. Restless Legs Syndrome; Coping with Your Sleepless Nights.
  
• A book for lay people about RLS. This is my favorite to give people when I want them to understand the impact RLS has on one's quality of life:
  Yoakum, 2006. Restless Legs Syndrome: Relief and Hope for Sleepless Victims of a Hidden Epidemic.
  
• The website for the southern California support group of the RLS Foundation, maintained by Dr. M. Buchfuhrer, who will answer questions about your particular problems with RLS and provides an archive of previous questions and his answers.
  http://www.rlshelp.org/
  
• Jill Gunzel's website for non-pharmaceutical aids and for attitude:
  http:/www.rlsrebel.com/

[Roger411]

Klonopin is a good treatment for rls especially if you have pain. Klonopin is a muscle relaxant, and wil also get you to sleep.Maybe you were not taking a high enough dose. I was taking about 4 mg/day,for 6 months, along with a litle ritilin. I had to get off because the klonopin increased depression. The ritilin seemed to make the klonopin work better.
A possible cure for depression caused by klonopin would be to take 5htp caps which are sold in all health food stores. I tried it and it seems to help. Take the lowest dose of klonopin that you can,(its a high potency drug),but enough to get you to sleep.

[ViewsAskew]

Klonopin is a good treatment for rls especially if you have pain. Klonopin is a muscle relaxant, and wil also get you to sleep.Maybe you were not taking a high enough dose. I was taking about 4 mg/day,for 6 months, along with a litle ritilin. I had to get off because the klonopin increased depression. The ritilin seemed to make the klonopin work better.
A possible cure for depression caused by klonopin would be to take 5htp caps which are sold in all health food stores. I tried it and it seems to help. Take the lowest dose of klonopin that you can,(its a high potency drug),but enough to get you to sleep.

I would respectfully disagree with this. Klonopin hasn't been shown, clinically, to be that effective for WED. That said, it does seem to help a minority. I just wouldn't just to it before finding out why the other drugs didn't work. Beth has asked some helpful questions.

Some doctors believe that if a dopamine agonist doesn't work that it's not WED/RLS. They have suggested that this may be a "test" to determine if it is WED. So, when Mirapex, Sinemet, Requip and Neupro don't work, you have to ask if it's really WED. I am not sure the doctors are right, but these drugs do seem to work for almost everyone. They do have side effects and cannot be tolerated sometimes, but they work.