Running through some posts on this board, I followed a thread to this website: rlshelp.org/. Within it, there is a section where he writes, "There have been many anecdotal reports of patients developing RLS (or having very significant worsening of their pre-existing mild RLS) after surgery or trauma to their back." I think this might connect some dots for me. I have, now in hindsight, clearly had mild RLS, starting about 20 years ago (I'm 52 now). It was getting worse ever so slowly. But, up until some back trauma I experienced in Nov (8 months ago), the worst I experienced was I might wake up once every few weeks from hunger and have trouble getting back to sleep, because my legs were aching. Now, I've gone from that to, 8 months post back trauma, waking up once or twice a night to RLS, even if I've taken a couple Advil or a Tylenol (I have started on iron supplements and my ferritin was about 80, but that hasn't had enough time to judge if it'll work yet). Interestingly, I think anti-inflammatories might be helping my RLS (I recognize Tylenol is not an anti-inflammatory -- I'm still experimenting and learning).
Now that I've learned this, I'm inclined to think the back trauma is reason for the sudden worsening. Has anyone else experienced this?
And, if so, any learnings? I'm also wondering if this is the cause then could I have a chance of it actually getting better and me going back to the slow worsening path I was on before the trauma (since my back and the inflammation around there hasn't fully healed yet)
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JaggySr
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Like you, I had mild RLS going back to childhood. I had 3 back surgeries over the course of 2 years and my RLS quickly became a severe 24/7 problem. It took me significant trial and error and a relatively short experience with sinemet before I found a regimen that works for me. Good luck to you -- this group is of immense help.
Thanks for this, Chris! I have to say, I was skeptical of the video. But, then I tried the roller and found a spot on my back (near my injury) where it seemed to trigger RLS a little. I wasn't sure if that was in my mind until later in the day I was sitting and noticed some RLS crawling. I straightened my back and it dissipated. Then, I intentionally bent where my injury was and the crawling came back right away. I tried it several times, straightening and bending, and it was clearly activated by bending my back in that spot. Amazing. Bending there doesn't always activate it, but when it's activated, making sure I'm not bent in my back can relieve it. This has added to my understanding, and I appreciate that. I'm now planning to see Dr Buchfuhrer if I can and return to my back doctor to see if anything is healing oddly or if there is some string to pull there.
Back problems can definitely make RLS worse. It should get better as it heals although may not go back to your previous level.
For your ferritin are you still taking Liver Beef Glandular pills which have only 2 mg of elemental iron? Inflammation can increase hepcidin which prevents iron from being absorbed.
Hi. Thank you, Sue. I am approaching iron generally in the manner you suggest, taking 325 mg of ferrous sulfate every four days and iron bisglycinate every four days in between (so that I'm taking one every other day). I found ferrous sulfate every two days to be a little tough for constipation, but mixing the two up to work ok. I'm one month into when I started that iron supplementation.
The only other "medicine" that I am taking for RLS is a) either one or two Advil or a Tylenol before bed, and b) often, but not always, a Xanax (0.25 to 0.5 mg) or ~3mg of THC with some CBD to help me try to sleep through the peak RLS moments at night.
I have tried Magnesium and found it doesn't help me, although I do still take some each day. I have also found that Trazodone makes my symptoms worse for about four hours. Tramadol works very well, but amps me up, so I can't sleep with it (plus, I think I just noticed on this board that Tramadol can cause augmentation?), so I pretty much don't take that. I'm planning on trying Turmeric (Curcumin) soon (in the mornings, opposite the iron at night, as you suggest if taking Turmeric).
I would suggest you ask your doctor to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.) Beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin).] It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.
Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin)
Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...
Above all don't let your doctor prescribe a dopamine agonist like pramipexole, ropinirole or neupro.
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, 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 other than what you listed already 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
Hi Sue. Thank you for the suggestion. Does Gabapentin or Pregabalin decrease the progression of the disease? My sense from reading so far is it addresses symptoms (and potentially quite well), but that nothing changes the progression of the disease, except for those things that can trigger augmentation. Is that correct?
If that is not correct, it dramatically changes my approach. However, if it is correct, I'm interested in your input on my thinking: While Gabapentin has been on the market for a good while, it hasn't been out as long as I'm (currently) hoping to still live. So, we really don't know what taking it for the next ~40 years is like. And, it has only recently been used for RLS. Before that, dopamine agonists were used and they recently found those cause augmentation. So, what might they still find out about Gabapentin? At the moment, I can handle the symptoms. I don't love them, but I can handle them (basically, I give myself 9 hours at night, with the likelihood that one hour will be interrupted in there). As such, I'd rather delay pharmaceutical intervention. And, I'd prefer to give iron time to see if it works. While doing that, I'm also now exploring reducing inflammation since that might be a contributing factor to spinal cord related symptom triggers (turmeric and other anti-inflammatories plus significantly reduce sugar, etc). I am also going to go see Dr Buchfuhrer, if I can. I notice that he's now at the Stanford Sleep Clinic and I live in the area.
Dr Buchfuhrer is a world renowned expert so you are lucky to be able to see him.
RLS can get worse as one gets older but once it is at the point where it really bothers one every night it doesn't really or perhaps by a small amount over many years. It is more that it progresses from being once in awhile to every week or two to every week to every few days to every day. That's what happened to me.
Gabapentin was first used in 1985 for epilepsy and approved by the FDA in 1993 so it has been around for a long time so I wouldn't really worry about it. I am sure there are still people using it for neuropathic pain since 1993 and will be continuing to use it so by the time you have used it for that long if problems have been discovered for them, you won't have used it that long. Although it hasn't been used that long for RLS the same amounts were used for that. And the nice thing about gabapentin is it is easy to come off it if one does so slowly.
And I suspect augmentation has been known for a long time but was just not given that name and doctors just kept giving people a higher dose when that happened, just figuring that their RLS was getting worse. One person in the last day or 2 mentioned they were on nine times the maximum recommended amount.
It makes sense to try to see if iron and the other things work. And things may well settle down after the inflammation goes away.
MY RLS went up a notch when I had back issues with my discs compressing the spine to a degree. The back got better although is still a little problematic and can be provoked but the RLS didn't improve in the same way. I have found that careful eating, both reduced quantity and eating earlier, can help as well as moderate exercise. However sometimes I have patches where nothing seems to help and there's no obvious cause. One approach I use is meditation to help me accept and work with what I've got so at least I don't add frustration to the mix.
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