I think I'm suffering from RLS!

[Lyric]

It's been many years now that I've noticed strange sensations in my legs during periods of inactivity while sitting or laying down. It was only until about two years ago (or that I've taken notice) that it started to disturb my sleep. I finally came across this website that has begun to shed some light.

I've read up on the symptoms of RLS and fall under every category. (I am actually having it right now and it's an absolute pain).

I have yet to see a doctor about this because I'm trying to find a new decent doctor. My last one was not a very good one.

Thank god for this website. It has made me realize that I am not alone.

[Heronak]

Glad you're here, Lyric, and hope you can find some relief by reading and talking about RLS. There's a wealth of info on this site, so settle in, read away and ask any questions you like. All the best,

Heron

[jumpyowl]

I thought that I will "jump start you" and share my latest creation. It may sound confusing at first but it should give you a structure to help you organize the info as you are picking it up.

Want to get this to you before your first visit to your doctor. It is important to see your doctor well prepared. One should assume (unless proven different) that he/she is there to help you, and with this affliction he/she needs your help almost as much as you need theirs.

I am quoting some important points from the "An Algorithm for the Management of RLS, by M.H. Silber et al. Mayo Clin. Proc. 79(7):916-922, 2004. Print it out and take it with you, it might come handy.

To the common question how Dr can help you, tell him/her that you suspect having the so-called Restless Leg Syndrome.

The characteristic symptoms of the disease are "Limb discomfort and urge to move legs which occurs at rest. [paresthesia or formication if you please. ] Paresthesia are relieved by movement and are worst in the evening and night. (this is an important point).

Paresthesia cannot be determined by an objective measurement. However, RLS is usually associated with involuntary contraction of leg (muscles) during sleep known as periodic limb movements (PLM). Now this can be measured during a sleep test.

Here you can tell the Dr that you do not sleep well, and if Dr. decides on a sleep test that may be of a great diagnostic value. You should tell the Dr if RLS is a cause of onset or maintenance insomnia. Tell Dr which and also tell him/her how much it interferes with your life. Sleep diary of the last few days is a good idea to show him/her at this point.

RLS can range from from annoying to distressing and infrequent to daily. Here tell the doctor, how frequent and severe yours is. If you have pain, mention it. [Your doctor may counter it with the statement that RLS has no pain. That is not true. About half the patient have pain associated with the syndrome.]

Tell Dr that RLS is quite prevalent (5-15% of population) it is just usually not recognized.

Here you can tell Dr. whether the affliction runs in your family (RLS is familial in 50% of the case). It can also be idiopathic (of unknown causes) or or related to acquired conditions (iron deficiency/renal failure).

Regulatory status: FDA has not yet approved any medication for the treatment of RLS, but the "off label" use (at the doctor's discretion) of certain drugs are surprisingly well established.

Here you should let him/her how severe your RLS is. It is important because treatment does depend on severity.

The three distinguished severities are as follow:

Intermittent RLS (that is troublesome enough to require treatment but does not necessitate require daily therapy)
Daily RLS (that is frequent and troublesome to necessitate daily therapy)
Refractory RLS (which is daily RLS that had been treated with a dopamine agonist unsuccessfully.

SOME IDEAS ON TREATMENTS:

INTERMITTENT RLS

Nonpharmacological therapy

• Determine ferritin level and administer iron replacement

• Mental alerting acitivties to reduce boredom

• Abstinence from caffeine, nicotine, and alcohol

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

DAILY RLS (which is probably what you have)

Medications

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

• Gabapentin/Neurontin (anticonvulsive)

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

Remark: We do not know as yet whether you have refractory RLS or not since you have not been treated with a dopamine agonist.

POTENTIAL FUTURE THERAPIES

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!

___________________________________

Well I hope it helps, if you have any questions do not hesitate to ask me or someone else on this board. Also let us know what happens on your visit.

[Heronak]

I like the condensed, Reader's Digest version, Jumpy! It's nice to have the basics all in one place for folks. Thanks,

Heron