I have recently been diagnosed with RLS and am deciding on a course of treatment having rejected Ropinirole which was recommended by my Consultant.
I am suffering with excessive sweating particularly at night time. The sweating is causing extreme discomfort necessitating several changes of pyjamas.
I am wondering if this is a consequence of RLS and if any memners suffer with similar symptoms.
Hi Don
Ropinirole, Pramipexole, and Rotigotine skin patches are still the go-to drug treatments for RLS in the NHS, but elsewhere Gabapentin is recommended. But I'd be very cautious about starting ANY drug treatment for RLS before checking other factors: unfortunately few GPs or neurologists know anything useful about RLS!
On night sweats: I've had RLS on and off for decades, but the only period that I had sweats was when I had been on hormone therapy to reduce testosterone before radiotherapy for prostate cancer, in effect inducing menopause. Now thankfully gone away as testosterone levels return to normal. A blood test for testosterone may be informative.
But what's causing your RLS? Many drugs including statins and anti-histamines can trigger RLS and continue to cause it even if you are taking other remedial measures. Statins are my bete noire. What are you on?
Diet can also be a cause: for me it's the sweeteners in diet drinks. It can also be too much sugar, and various other things in highly processed foods.
Too much or too little exercise can also be a problem.
If drugs or diet aren't the issue, have you had a full blood test, including serum ferritin? If you have or do, make sure that your GP gives you the actual number: if it's under 100 supplementation with Gentle Iron helps a high proportion, although it can take many weeks/months to work.
Iron wasn't my problem or solution, and I found that magnesium supplementation helped me. I take 400-600mg of Magnesium Citrate a day, but you need to be careful as this can cause diarrhoea.
Coming off both statins and diet drinks has stopped my RLS almost entirely. Others will give you more detailed advice.
Good luck
Hi Chris,
Thanks for your detailed and informative reply. It is very useful.
The only medication which I am currently taking is Levothyroxine for an underactive thyroid. I have not come across any other references to night sweats associated with RLS on the forum and your own experience supports that. I will try to identify some other factor which could be responsible. Your comment about Testestorone is interesting and I will explore that further. As far as my diet is concerned, I feel that is reasonably healthy, but I am looking at reducing my sugar intake even more and eliminating processed foods.
I have received advice on the forum to check my ferritin levels and my GP considers my level of 69 to be acceptable in spite of other popular opinion which is that Ferritin levels of RLS sufferers should be increased to 100. I am booking an appointmrnt with my GP to discuss this and hopefully get him to change his opinion......
Like you, I am hesitant to embark on ANY medication to treat RLS before trying to alter lifestyle and diet factors. I hope I can find a solution as living with RLS is very unpleasant and I sympathise with fellow sufferers.
Thanks again for your interest and advice.
As your serum ferritin is 69, below the recommended level of 100, preferably 200, you could try supplements now. Gentle iron (ferrous bisglycinate) taken every other night may help relieve your RLS. Read any reply to recent posts by Sue Johnson and she sets out all the info on iron and how to supplement at night.
I've attached 2 articles about iron infusions and RLS. And the link to best treatment protocol from the Mayo Clinic.
As Chris Columbus says, most UK doctors know very little and are still prescribing dopamine agonists, despite world RLS experts no longer doing so. They also discount the link to iron despite overwhelming evidence it is the main cause of RLS.
Several people have managed to get iron infusions for RLS in the UK. St Georges in Tooting, the Royal Cornwall in Truro and Sheffield hospitals have done iv iron infusions off licence for RLS.
Statistically, raising serum ferritin will dramatically improve RLS for the majority.
Ensure you're not on meds that trigger RLS such as sedating anti histamines or cough and cold meds, anti depressants, statins, beta blockers or PPI gastric meds.
ncbi.nlm.nih.gov/pmc/articl...
According to the Mayo Clinic side effects of Levothyroxine can include - amongst many other things - fever, heat intolerance, sweating and restlessness.
It could be a first sign of diabetes or could be because of other things. Read this article betahealthy.com/hyperhidros... Another useful site webmd.com/skin-problems-and... It us also possible the Levothyroxine is causing it or your thyroid problems. In any case you should definitely see your doctor about it.
hi, have you spoken to your GP about your night sweats. These can be a symptom of various conditions though in the end aren’t always.
But they can be a sign of various conditions, some vary important that should be identified and treated, so please visit your Doctor about them ( I’m an ex NHS worker )
Hi Thanks for taking an interest.
I mentioned the sweating to my GP when I had the undiagnosed RLS. He did not focus on the sweating and effectively ignored it.
Once I was diagnosed with RLS I assumed the sweating was associated with the condition but it does not seem to be a symptom of RLS. I will have to discuss it again with my GP.
I despair on behalf of my ex colleagues! And apologise on behalf of the NHS!
Yes, your other responders are correct. Night sweats should not be ignored ( try using that term to the dr )
They can turn out to be nothing or they can be a sign of something very significant.
Do go back to your Dr.
Have had rls for years. Was diagnosed three years ago with lymphoma. I was treated and it appears to have gone, according to the many tests I underwent. I was advised that if I was to have severe night sweats, that I was to have it checked out as that could indicate a return of the disease. Of course, your problem could be any number of things but I would certainly have it checked out.
I have had this problem and yes I do think it has to do with RLS. I’m especially sensitive to serotonin and this (in any form, drug or supplement) always makes me feel incredibly hot. For this reason I don’t tolerate iron bisglycinate so I use ferritin fumarate. Chronic diarrhoea can be an indicator.
Hi Don, I'm 73 years old and always interested it trying to share my experience with people who are trying to avoid the medicine approach. I even used to diet to work around my hypothyroidism.
MY TEN STEPS TO ACHIEVE COMPLETE RELIEF FROM RLS (AND A NEW LEVEL OF GOOD HEALTH)
1) Eat a low oxalate diet.
2) Take magnesium supplements but not magnesium glycinate. Excess glycine seems to stimulate the liver to produce oxalic acid inappropriately.
3) Avoid gelatin and gelatinous soups and stews because of their high glycine. Be mindful of animal protein that may be especially high in glycine. Collagen supplements probably should be avoided.
4) Eat organic vegetables and fruits. Non-organic are typically sprayed with oxalic acid solution post harvest to preserve freshness and nutrients.
5) Avoid eating asparagus. Apparently asparagusic acid operates similarly to oxalic acid.
6) Avoid refined, bleached and deodorized cooking oils made from seeds. I believe these oils have made me especially susceptible to fluoride poisoning. (I mostly use unrefined, virgin coconut oil and cold pressed extra virgin olive oil. I also enjoy butter and ghee.)
7) Limit wheat products to those made with unenriched, unbleached, unbromated flour. Eat unenriched, organic pasta. When using commercial yeast instead of the natural leavening of sourdough starter, allow the dough to rise unrefrigerated for 12 to 18 hours, or more. (I typically buy King Arthur flour.)
8) AVOID CONSUMING FLUORIDE! Drink properly filtered or purified water. Avoid non-stick cookware that isn’t PTFE and PFOA free. Avoid canned foods unless the can liners are free of fluorocarbons. Don’t drink bottled or canned beverages made with fluoridated water. Wine, especially from California, is typically high in fluoride. Many pesticides are high in fluoride, so eat organic. (If you drink water purified by reverse osmosis you probably should add back appropriate minerals.)
9) You may need to take a break from goitrogenic foods. RLS and oxalate intolerance may be evidence of unusual susceptibility to fluoride and you may have a significantly impaired thyroid. In addition to damaging the gut lining, impairing iron absorption, causing magnesium deficiency and suppressing melatonin production, fluoride has traditionally been used as a medicine to suppress thyroid function. I experimented with avoiding all goitrogenic foods and my thyroid function greatly improved. After avoiding fluoride for more than a year I am slowly reintroducing cruciferous vegetables which have been boiled. I’m still avoiding the many wonderful fruits of the rosacea family. (I had been wary of eating fruit because of wide swings in my blood sugar. Eventually I realized that, for me, it was the goitrogens of certain fruits, rather than the fructose, which was causing my energy swings.)
10) Whenever possible avoid medicines that stress the liver’s detoxification function. I suspect the RLS augmentation from Pramipexole and similar drugs is due to liver impairment. Oxalic acid is a normal byproduct of liver function and it must be properly disposed of. When liver function is impaired, overproduction of oxalic acid may occur, especially in the presence of high glycine.
Since following these protocols I have returned to my college age weight without trying to lose weight; I feel like I have a new, youthful pair of legs; I experience a vitality I haven’t known in decades; and my severe allergies to dust mites, chiggers and springtime pollens have vanished. Because I’m feeling so much better I am hopeful that I may recover my ability to tolerate oxalates sometime soon. I wish you all the best. Jim Hejl
Please be aware that I don't agree with all of notnowdad's statements. For example RLS augmentation from Pramipexole and similar drugs is due to liver impairment. Also, I asked him for a source on fluoride before and he wasn't able to give me one.
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