The RLS nightmare

[Miloboy23]

My name is Tim and RLS sucks!!!!! In 2013 i was put on disability because I have flat back syndrome and it has caused chronic pain for over 20 years non stop 24/7 and I am addicted to opioids. On June 20th of this yr I received a dbl laminectomy on my l4 and l5 vertebra and the knife was removed. Now I am trying to get off the pain drug which is buprenorphine/Nalox. I am down to an 8th of my dose but cannot stop taking it because it is the only thing that shuts down the RLS. I am trying a product called Restlex to see if it helps, so far no help. I am going to get some Alpha lipolic acid as I have read that it may help. Anyway that is my situation any information will help.

[ChrisColumbus]

Welcome Tim!

It may be necessary to continue with low dose buprenorphine to manage RLS:   Joolsg and others can better advise.

Restex is another of the comparatively expensive concoctions of magnesium, a little iron, some vitamins and plant extracts. In my view you'd be better off having a fasting full panel iron test, to include serum ferritin and transferrin saturation, and then to come back here with the actual numbers for the best advice on whether and what iron supplementation is likely to help going forward. It can be transformative for some.

Magnesium glycinate helps some but not all: you'd be better off just buying mg glycinate straight: why Restex compounds it with magnesium oxide, one of the least bioavailable forms of mg, heaven knows.

Alpha Lipoic Acid is an antioxidant that helps some, but again *in my view* is unlikely to help you much on its own.

[LotteM]

Hi Tim, welcome.

Just a question first:did you already have RLS before the back problems and:or before you started weaning off the opioid? RLS is often associated with back problems. More importantly in your story, I think, is that opioid dose reduction/ withdrawal induces RLS symptoms. Your treatment will be different based on whether you had pre-existing RLS or opioid-withdrawal-induced. In the latter case it most likely will help to reduce very slowly and the RLS should subside some time after you’re off the opioid.

[Joolsg]

I agree with Lotte. We need to know if your RLS was present before you were prescribed Buprenorphine or is a result of opioid reduction.RLS is a common symptom of opioid reduction.

If the RLS was present before, Buprenorphine is an excellent drug to control it.

However, we use very low doses. Usually under 1mg. I suspect you are on a much higher dose.

As you're in the USA, please join rls.org and see a doctor who is knowledgeable about RLS.

Where are you? There are some excellent RLS specialists in the US.

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

How much buprenorphine are you on? If it is not more than 6 mg, just stay on it since it is controlling your RLS.

I agree with ChrisColumbus. You need to have your ferritin checked. It is the first thing a doctor should do if you have RLS. To elaborate with what he said Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45. And do report back the results when you get them as we can give you some advice.

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

If you don't have a good doctor for your RLS, let me know and I might be able to give you a name. I would need to know what city you are in.

[ziggypiggy]

You said you are addicted to the pain medicine. This is normal and can also be expressed as your body being dependant on them to function. That is their purpose. Addicted behaviors is what you and your doctor are concerned about. Taking your medicine as prescribed is not addictive behavior.

Taking more medicine than prescribed, asking for early refills, asking for frequent increases in dosage and or procuring additional pain meds from other sources are addictive behaviors.

If you aren't exhibiting these behaviors and are getting both RLS and pain relief i don't see a problem.

You will have to come to terms that it is quite possible you will he on pain meds for the rest of your life. This can be a deal breaker for some. Myself, i just see it as no different than needing insulin daily to survive and function.

To each his own. I wish you relief.

[Searcher55]

I'm trying to get a GP to prescribe Bup for RLS. Keep taking it!