RLS in legs and arms

RLS in legs and arms for 3 years. Tried Mirapex, Gabapentin, Pregabalin which all made me feel horrible so discontinued. Tried Acupuncture, Homeopathic, Naturopathid remedies. All seemed to work for awhile then not. Yoga helps as does walking at night when I cannot sleep because of the RLS. Only get a few hours of broken sleep a night. It is very difficult. My ferritin levels are high so Dr. doesn't think that testing for iron brain absorption is helpful. Take magnesium and Vit. B at night. Any opinions would be welcomes. Thanks and good luck to everyone suffering from this debilitating syndrome.

[Joolsg]

Do you want to consider medications?RLS doesn't go away and if you're not getting any sleep, you will become ill with other co morbidities.

Mirapex causes augmentation and ICD, but gabapentin and pregabalin work well for many if taken in the correct way- at night only. Also, the side effects are horrible for the first 3 months, but they do then settle for most people.

The alterative meds are low dose opioids. Dr Winkelman set up the Massachusetts Opioid Register to prove that RLS patients stayed on a low dose and didn't develop tolerance or addiction ( with correct pres screening). Methadone and Buprenorphine are the most effective.

[SueJohnson]

Can you give us some more details. What was your ferritin? What side effects did you have on gabapentin and on pregabalin and how long were you on them? Where about in Canada do you live?

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, 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, C, 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

[Marlayna67]

after going through the med protocol, seems many, like myself, end up finding total peace with buprenorphine. If I were at the beginning of possibly taking meds like I think you might be, I would skip straight to it and save myself the hassle of trying all the other drugs first.

[ChrisColumbus]

I wonder why you asked for help, got replies from experienced and knowledgeable forum members, and then closed your account without responding. If you're still visiting the site and still need help do try again.

[Bernaldi in reply to ChrisColumbus]

I think what you saw in the closing of the account was a form of despair. When what people tell you to do appears 100% impossible for you, you likely decide to try elsewhere. At least I would.

[ChrisColumbus in reply to Bernaldi]

Possibly, although having stated "Any opinions would be welcomes" I'd have expected a little more engagement rather than quitting within hours. Given the opportunity I'd have asked what changed 3 years ago to trigger RLS, and gone on to questions around dietary triggers and which medications to avoid. I still hope that the poster will return.

[DicCarlson]

Rethink the iron (ferritin) connection - get actual numbers.

[Bernaldi]

I'll put again that I'm not at all sure that serum numbers mean anything. If the iron is in the serum but not getting where it needs to go in the brain, ferritin numbers can look good but not indicate the actual condition. If someone has had a fluoroquine antibiotic, the fluoride displaces metals and that includes iron. So the iron can be in the blood but not making to the receptors that are being hogged by the fluorine. Fluorine is extremely difficult to get out of the body. My ferritin is over 300 and I have very bad RLS depending on what I eat.

[ChrisColumbus in reply to Bernaldi]

I believe that low serum ferritin is a good pointer to iron deficiency, and it has been shown that higher levels can help RLS sufferers. However, moderate to high serum ferritin can mislead (in the context of RLS) in that this may indicate inflammation linked to a condition, illness or disease - or of course a recent infusion - rather than iron storage levels. Transferrin saturation always needs to be measured as well.

[Bernaldi]

I didn't check transferrin, but FQAD is definitely a condition, and reversing it is nearly impossible, although it can be improved in some over time. As stated before, fluorine is nearly impossible to get back out of its attachment to the receptors because it is the most reactive element in the periodic table, and once it's grabbed on, nothing is going to displace it because everything else is less reactive.

[ChrisColumbus in reply to Bernaldi]

You've no doubt seen this:

"Symptoms such as insomnia, restlessness, seizures, and convulsions have been reported in connection with fluoroquinolone treatment...Fluoroquinolone-induced CNS toxicity involves the inhibition of GABA receptors and the activation of N-methyl-D-aspartate (NMDA) receptors"

ncbi.nlm.nih.gov/pmc/articl...

[Bernaldi]

Interesting that the tendon ruptures are not mentioned. They are one of the foremost recognized symptoms by those who have this happen to them. I lost any serviceable use of my arms and shoulders for a year and a half. Others are not so lucky as to get the use back, and many lose achilles tendons and end up in wheel chairs.

Flagyl (metronidazole) is equally as bad, and often the two are prescribed TOGETHER for something like diarrhea. As if totally destroying the microbiome were going to cure something.