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Restless Legs Syndrome

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Retren

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The only thing which relieved my R L S was dilaudid . This worked for many years. Last summer I had a cardiac arrest from which time I have been vetoed from this medication.Currently my treatment has been very unsuccessful to say the least.For a year now I have had little sleep and a great deal of acute discomfort.None of the regime is affording much in the way of help for long. Tha tramadol only lasts a few hours then it all starts again.the nuepro caused excessive oedema and mirapex a 24lb weight gain. All in all I am not a happy camper. I don,t know if this information is helpful to anyone.

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Retren
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howlinwoolf profile image
howlinwoolf

Have you and your doc tried the basics? A ferritin test, magnesium citrate (high quality) supplements and gabapentin have be successful for some.

Also, a warm magnesium bath (Epsom salts) goes a long way. RLS can have a few different causes but mag deficiencies seem to be a big one. A ferritin deficiency would point to low dopamine production and that info would be very valuable.

Personally, I have been on beta blockers, cogentin, and restoril among the other things which I still take. I have had most success with gabapentin and magnesium with percocet for when it is intolerable.

I sincerely hope you find relief. This is a dreadful and misunderstood ailment.

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Retren in reply tohowlinwoolf

Thank you for your advice.I have had this condition since about 10years old I am now 79 and have tried everything imaginable My late husband was a very brilliant endocrinologist.As a result I had access to many things.I suppose I was an early prototype.Unfortunately the older one gets it becomes increasingly worse. Along the way I also had Pa.The thing that strikes me the most this has become endemic!I have found certain foods excaserbate or induce an attack. Quinine used to be used but if one is sensitive to caffeine then that,s no use.One of my husbands colleagues recommended Brewers yeast. Pressing ones feet on the wall.etcThe replique was disastrous for me and so we all struggle on.I must say that the saying misery loves company is very appropriate.Sorry to be so long winded.it is a bit of a problem not always being familiar with my homelands drug names as I live in the US.Retren

howlinwoolf profile image
howlinwoolf in reply toRetren

No worries. I just feel for you. I have a number of physical issues but sometimes I think the RLS is the worst.

I live in the US too so I try to use generic names but don't always remember. I've heard that alternating cold and heat on your legs before sleep can be helpful though I've never tried it. The main thing for me has been gabapentin or pregabalin. (Neurtontin or Lyrica) depending on what your insurance will pay for. I might even need extra tonight. :/

Redhots7 profile image
Redhots7

They gave me diladid IV when in hospital (April, 2014) with pneumonia and 2 blood clots in lungs . Great pain killer . I live in USA and they will not prescribe pill form , only IV use. Dang , it really helped to keep me comfortable as I was in horrible pain . They drained 1600 cc of fluid from my lungs.

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Retren

Well I had no problem having the pills as my spouse prescribed them.He saw how the R L S was at first hand. Since he died and I have had a cardiac problemI no longer am allowed opiates. This is a severe problem because I get no respite.Regarding the prescribing opiates one would think a person was out to go raping and pillaging.Incidentally I never had any side effects nor when it was suddenly stopped any withdrawal.Retren.

Have you asked for low dose methadone? Johns Hopkins uses it for the most severe treatment-resistant cases. I have severe 24 hr symptoms and I was on tramadol for months so I feel your pain.

The huge problem with tramadol is that like dopaminergic drugs it can actually augment your symptoms. It controls them for a few weeks and then suddenly the symptoms get worse - you take more - things are fine for a while and then the cycle starts all over again. This doesn't happen for everyone but please keep an eye out for it because if I had known about it when I started it would have saved me horrible withdrawal, worsened symptoms and a stint in detox to switch onto methadone (I wasn't abusing any drugs but only the detox people had the knowledge to handle my case). And anyway the half life of tramadol is way too short and you are always battling symptom rebound between doses - that's why methadone has worked way better for me.

You might not be able to take methadone but it's worth a try.

I agree with others (you are probably doing all of this already!), take at least your RDI of bioavailable iron, have regular blood tests to make sure your ferritin levels are in the top end of the normal range, take lots of magnesium through the day (magnesium citrate, aspartate, or chelate is best), and make sure you're not taking anything else that has been shown to aggravate the RLS: antinausea drugs, antihistamines, antidepressants, clonidine.

You can also try the Relaxis pad (google it). Lower back massage can help a bit too.

Good luck x

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