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[Snowyegret]

Hi, everyone. I was diagnosed earlier this year with RLS but I've been suffering with the symtoms for almost 20yrs (I'm 38yrs old). I had finally got to the point where I couldn't take it anymore and was getting very frustrated. That's what led me to RLS. The neuralagist (Sp?) said my RLS was different from what she's seen. I get my symptoms in the early evening, usually after dinner, when I finally sit down to relax, watch some TV or a movie. Within 30 minutes my legs start twitching. I have a hard time explaining what they do. I don't really feel the creepy/crawling that I've been reading about. It's mainly my legs just twitch and arch out (when I'm reclined) or kick out (when I'm sitting normal). It's a motion that feels like it starts in my knee muscles and travels down to the bottom of my feet. I also have a hard time getting to sleep.

My doctor started me on Carbidopa/Levodopa. I was up to the max of 2 pills and it didn't seem to be helping as much and I was starting to wake up between 3am-6am with the rebound twitching. For the past two weeks I've been take CalMag Plus, which is 319mg Magnesium and 118mg Calcium, and 171mg Potassium. This was advised from a Chiropractic doctor. It does seem to help some but not totally. Yesterday my doctor changed my meds to Pergolide .05mg. I have to take one tablet 1hr before I get symptoms and one tablet right before I go to bed. This is to help with the rebound, I think. If they don't work I'm supposed to increase one tablet every three days, up to 10. Ugh! I really don't want to have take 10 tablets. Is anyone familar with this med???

I try to exercise and work out 3 days a week and do alittle bit of stretching right before going to bed. Beyond that I don't know what else to do. My Mom has RLS alittle bit but she thinks it's caused by her Neurapathy (which she suffers from severely) .

I'm glad there is a place that I can go to get info or to just talk about my problem. Most people are not familar with it.

Snowyegret

[jumpyowl]

You and your doctor need a plan of attack. here ais a brief review of an algorithm for RLS:

An Algorithm for the Management of RLS

By M.H. Silber et al. Mayo Clin. Proc. 79(7):916-922, 2004


INTRODUCTION:

Characteristic symptoms: Limb discomfort and urge to move legs which occurs at rest. Symptoms are relieved by movement and are worst in the evening and night.

Associated afflictions: RLS is usually associated with involuntary contraction of leg (muscles) during sleep known as periodic limb movements (PLM). (BTW the reverse is not true).

Severity: ranges from annoying and infrequent to distressing and daily.

Secondary adverse events: Often RLS is a cause of onset or maintenance insomnia.

Prevalence: 5-15% of population.

Pathophysiology: RLS is familial (50%), or idiopathic or related to acquired conditions (iron deficiency/renal failure).

Regulatory status: FDA has not yet approved any medication for the treatment of RLS, so all the drugs discussed here are off label.


Classification of RLS based on severity: The article distinguishes between three types of RLS:

Intermittent RLS

RLS that is troublesome enough to require treatment but does not necessitate require daily therapy

Daily RLS

RLS that is frequent and troublesome to necessitate daily therapy

Refractory RLS

Daily RLS that is treated with a dopamine agonist with one or more of the following outcomes:

o Inadequate initial response despite adequate doses

o Response that has become inadequate with time despite increasing doses

o Intolerable adverse effect

o Augmentation that is not controllable with additional earlier doses of the drug

TREATMENTS:


INTERMITTENT RLS

Nonpharmacological therapy

• Determine ferritin level and administer iron replacement

• Mental alerting acitivties to reduce boredom

• Abstinence from caffeine, nicotine, and alcohol

• Consider if the use of antidepressants, neuroleptic agents, dopamine-blocking emetics or sedating antihistamines may be contributing and if they can be discontinued.

DAILY RLS

Nonpharmacological therapy

It is the same as for intermittent RLS

Medications

• Dopamine agonists (pramipexole/Mirapex or ropinorole/Requip)

• Gabapentin/Neurontin (anticonvulsive)

• Low potency opioids (propoxyphene/codein, or opioid agonists,
such as tramadol/Ultram

REFRACTORY RLS

Medications

• Change to gabapentin/Neurontine from dopamine agonist

• Change to a different agonist

• Add a second agent such as gabapentin, benzodiazepine, or an opioid

• Change to high potency opioid or tramadol


ALTERNATIVE, INVESTIGATIVE, OR POTENTIAL FUTURE THERAPIES

The management of RLS continues to evolve as new drugs become available and older ones are prescribed less frequently.

Carbamazepine/Tegretol (an anticonvulsive) and clonidine/Catapres (antihypertensive medications) have been successful in clinical trials but are not commonly used in clinical practice..

Among potential new dopamine antagonists Cabergoline/Dostinex (it is also a amtihyperproclactinemic) is of interest because of its long half life of 65 hours, which may result in less augmentation.

Magnesium (ions) has been reported to be effective. In addition to oral iron supplements, treatment of RLS by intravenous iron infusion is presently being investigated in patients with both low and normal ferritin concentration. Such use dates back over 50 years.

You can even find Cabergoline toward the end, That is the cutting edge of treatment so your doctor must be up to date.

Is your RLS associated with Periodic Limb Movement Disorder or you are one of those who only has PLMD?

Have you had a sleep test yet? It would be useful both as a diagnostic test and to find out what else do you have?

What is you major morbidity? Insomnia? Pain?

You can see from the algorithm that dopamine agonists are by no means the only way to treat RLS. Make sure your doc understands that.

If you have any question let us know.

[Snowyegret]

Thanks, JumpyOwl for the fast reply. Alot of info and not all of it soaking in yet. I believe my RLS is associated with PLMD. I haven't had a sleep test yet. I am a bit nervous about it, don't know if I'd be able to fall asleep. My Dad does have sleep apnea (uses a breathing machine at night) and my Mom does have some RLS associated with her Neuropathy. I don't have pain, it's more of a serious irratation. Some times my muscles feel sore, like they've been worked out too much. I do have problems sleeping. The meds (Sinemet) was helping but then I started getting the rebound early in the morning. I'd have to get out of bed and walk around so I wouldn't wake my husband. I'm starting on Permax tonight so hopefully that will help. I still have alot to read and to learn about RLS and will come back to the site periodicly. Thanks so much for your help.

Snowyegret