Acupuncture

[Seal1504]

I've tried a number of sessions of acupuncture & I had no relief at all! Also trying ear seeds a form of Chinese pressure points again no relief. Sorry to disapoint.

[ChrisColumbus]

Quite a few sufferers have tried acupuncture, but most have reported no help, one or two feel that it may have helped a little for a time - frankly I'm very doubtful of any real effects against RLS.

Being in the UK you've probably seen the recent contretemps over a claim on Dragon's Den that ME/CFS had been 'cured' using ear seeds and other alternative treatments:

theguardian.com/society/202...

I'm not going to try to argue that Chinese medicine doesn't help some conditions, but I've not seen anything to date linking this positively to RLS

[ChrisColumbus]

A couple of years ago you posted about trying CBD, and SueJohnson referred you to her reply to someone else about the necessity of a fasting full panel iron test, advising not to get put on dopamine agonists, and to try gabapentin. Did you ever follow up on this?

[Seal1504 in reply to ChrisColumbus]

Hi I'm on gabapentin various Dr's & private neurologists have wanted to put me on dopamine but I've resisted & they aren't happy that I've told them about augmentation. They seem to think that it is very rare for that to happen!!! Still have pain especially intense burning but don't want to take loads of gabapentin.

[ChrisColumbus in reply to Seal1504]

I expect - without checking back again - that Sue and/or Jools will have told you that "Most RLS patients require 1200 to 1800 mg of gabapentin daily, but doses up to 3600 mg daily can be used. Because of nonlinear kinetics and substantial interindividual variability, the gabapentin dose often does not always reflect serum level, especially at single doses above 600 mg. For this reason, multiple doses of gabapentin, spaced at least 2 hours apart, may be necessary to enhance absorption and efficacy." (Mayo Algorithm).

I'm afraid that too few UK doctors or neurologists know much about RLS and treatment in general or about DA augmentation in particular. As they often seem particularly suspicious of information from US experts, refer to this on RLS-UK:

rls-uk.org/augmentation-reb...

[SueJohnson in reply to Seal1504]

Does the gabapentin help your RLS? or just the pain?

[SueJohnson in reply to ChrisColumbus]

I don't see any post nor reply by him on CBD nor do I have any note of ever replying to him ??? Can you give me the link.

[ChrisColumbus in reply to SueJohnson]

It was part of the following. You referred Seal to your initial reply to Micky82:

healthunlocked.com/rlsuk/po...

[SueJohnson in reply to ChrisColumbus]

Thanks.

[SueJohnson]

Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and 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 transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and 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, 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, 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.

[SEBARTA]

I also tried acupuncture and I did get some relief for a day or 2. I am getting decent relief from 100-150 MGS of pine bark extract, 250 MGS of Aschwaghnda MSM 66, and 4 MGS of astaxanthin and a B complex per day. Can sleep 7 hours most nights with only subtle symptoms. Prior to this regimen, I was miserable.