I have suffered from RLS for more years than most of you are old. It was difficult for me to learn this truth. RLS is not leaving me. No cure or the other devil I have Spinal Stenosis. Both are neurological disorders and although they give me the devil the only cure is the grave.I have talked with others and after years of trying they learn to deal with RLS. I have tried a bit of everything but now I take 2 Super strength Tylenol and 1 Ropinrole per day when RLS is at its worse. Then walk, then drink milk and hopefully go to sleep. The weather in the USA South was horrible this week so guess what else was horrible?? You got it RLS and Spinal Stenosis. Do not let these syndromes rule your life. get out and live its a beautiful world so enjoy God loves you.
Hello! I try my best to live as fully as I am able to. It's not easy when tired all the time, but I try. I am lucky to live in a place that is pedestrian-friendly, so I try to get out for walks as much as possible.
However, for some, rls is a temporary issue. And can be "cured" by simply changing lifestyle.
There seems to be two types of rls- one is so called familial or genetic or Primary - in other words, we seem to be born with it, and it can be identified in the family. This is really difficult to cope with and probably can only be treated by medications. Opiates would seem to be the only real solution in this case- but , sadly, not available to all.
Secondary rls is more easily treated.
It is set off by some environmental factor- usually triggers of some sort- medications include antihistamines and antidepressants. Foods include msg, alcohol ,sweeteners, sulphites/ ates in processed foods, sugars, raising agents (in my case 😥) and many more. A food diary is essential to establish the culprits. I'm sure there are many toxic airborne elements out there that we are not even aware of.
Thirdly ( I was never good at maths) there are rls symptoms which are not rls , but some form of Neuropathy. It may be dangerous to misdiagnose this , since it could be a pointer to much a greater malsdy.
Hopefully this clarifies and gives hope to some sufferers.
I was very interested in your reply. I have the familial/genetic type of RLS all my life and I did not realise until I read this that trying to find triggers is for the secondary type. I have been trying unsuccessfully to find triggers!!! Its probably my stupidity because I have read and studied lots about RLS but never realised this before. In a way that really helps me because now I wont need to keep looking for triggers. I have not posted for a while as my health problems have kept me lying low. I have had for a year severe sciatic pain down both legs leading to me being unable to walk far. I was referred to a Pain Clinic by GP and the first NHS appointment was March 2020! I then went privately to spinal surgeon who diagnosed stenosis and referred me to another Consultant who is arranging for me to have epidural injection. The combination of spinal stenosis and severe RLS is no picnic . I am at present taking 60 mg. codeine at night but this is not very successful and I get very little sleep like most of you on this forum. However, I do not have many options as I have bad sensitivities to most medications. I am hoping that the injection may also help the RLS but I know this may not happen. Becoming more mobile would be great but have been told injection may not bring any relief. We live in hope - we have to!!! I just want to thank you and all the others on the site who have helped me in the past and I will let you all know the outcome------- Happy New Year to all.
I beg to differ with the comments on primary and secondary RLS. I present exhibit 1 - me. Of course I might be a rare example and I agree that we are not all the same.
However I have primary RLS evidenced by mother and father with RLS
Sister with RLS three out of three childern with RLS
I am not cured but I was a fairly difficult patient. Up and walking around until about dawn 7 nights per week and trying to survive on one or two hours sleep.
Go forward toward the light by about three years
I heard that gluten might be associated with RLS so Gluten free diet. RLS decreased but still undesirable.
Discussion with Monash university led to going tighter on diet and adopting the FODMAP diet RLS improved markedly but still frequent lapses. Reduced both frequency to about 3 nights per week and only keeping me awake for 30 minutes to 5 hours.
Then Discussed with a dietician who introduced me to the Prince Alfred Hospital Low Chemical diet. Made a few small modifications which included avoiding lactose.
Now I have periods of zero RLS lasting for up to about 25 days and a normal RLS night is being awake for an hour. I still have a few bad nights of RLS until 5 am but they are now rare and can often be blamed on some dietary variation which might be accidental or a "what the hell" moment where I decide to enjoy a delicious, revolting, unhealthy , wonderful meal
I am still experimenting and the latest move is an iron infusion. Everyone with RLS should try an iron infusion. It may not be easy to get - some will get it free and others will pay around $500 to GBP500 depending on how your GP/specialist feels and the law in your country. This is not speculation and has been proved to work for 25% to 80% of patients depending on the report you read. I have to wait until the end of february to see if my infusion is going to work for me. But it has worked for others and the well respected Doctor Buchfuhrer suggests it as the first line of attack. One of my three girls with RLS was also anemic so she had no problem getting an immediate (and free) infusion. Her RLS is all gone. Her anemia is also gone and she feels wonderfully healthy as well. We are all jealous of her ailment and wish we were anemic. Strange world when you wish to be sick because one cure might fix another problem!!!!
I am also trying 5mg of folic acid each day. Its worked for some so its worth a try. I can't really tell if it helps me yet and the result will be confused by the iron infusion.
If you are interested in more details then let me know and I will PM you a list of all sorts of things that have been reported as having helped. PM because its too big to post here regularly.
If the "cure" rate is only 10% then everyone should try it! Its cheap and has no medical side effects. Well originally it meant eating food that was about as tasty as the packaging but ongoing research by Monash has expended the foods on the FODMAP diet.
It should be noted that the FODMAP diet is designed for irritable bowel syndrome patients and so we RLS people may not be able to eat everything that the diet allows as its expended. At least the FODMAP diet and process provides a systematic method of determining what foods or groups of foods triggers your symptoms. It's not easy but the alternative is worse. I wish I could guarantee 100% cure!
Graham, Thank you so much for responding and for all your information. I am interested to hear all that you have learned over the years and that it is working for you. I was tested for food sensitivities and have very few. I changed my diet to cut out these foods but had no difference in RLS or other symptoms. For the past year I had a diet very high in vegetables and low/medium carbs with protein from fish and chicken mainly to lose weight and actually lost over 2 st. However, now that I cannot get around very well I am dependent on my older sister and so do not feel I can make any more dietary changes at present. We are in second half of 70s.
I am hoping spinal injection may help me to move around more and in turn help the RLS. I have more or less learned to live with the daily and nightly symptoms and just try to accept what happens and not get stressed! It would be lovely not to be constantly weary but there are worse things. Thanks again - its nice to know someone takes the time to write.
Hi - I had injections for bck pain and ultimately had a L4 block which instantly cleared my sciatica. Because of my spinal twist he was unable to give me an epidural jab. Good luck - hope it works for you.
Thank you Franklin for your words of encouragement. The last year has been so difficult. I have had to wait so long to get this far in receiving treatment. Did you have L4 block recently? I hope it continues to give relief. Unless someone experiences sciatica they don’t know how bad it can get! Good wishes
The fact that you have RLS and spinal stenosis makes me think that both are due to inflammation of the nerves caused by excess sugar and refined carb consumption. If you go on a ketogenic diet for a couple of weeks you might see a reduction. It needs to be rigorous (no 'treats') but if it works you'll never look back. Basically a ketogenic diet is a diet low in carbs, so that the body gets its energy from fats and proteins. Examples of such diets are Paeleo, and LCHF. As well as the inflammation that blood sugar produces, it affects the gut microbiome, suppressing bacteria which help the body to absorb nutrients and feeding bacteria which produce neurotransmitters. If you check out Dr Terry Wahls on youtube you'll find that she has rescued herself from being confined to a wheelchair with M.S. and has found the diet to help people with Alzheimer's. Another name to check out is Dr Georgia Ede, who recommends a similar diet. I've had few attacks of rls since I started on a minimal sugar diet 12 months ago, added to avoiding sorbate food preservative. You may not need to avoid the preservative, it may be something else, but that will become more obvious once you're on the low carb diet.
I dont have time to check out all the details but I think its wrong to group the ketogenic diet and the FODMAP diet together. They may have some similarities but they don't look like the same thing.
Remember what is usually referred to as the low FODMAP diet is an exclusion diet intended for short term use so that you can identify groups of foods that contain certain things called FODMAPS After you finish with the FODMAP exclusion diet you should have a list of which FODMAPs upset you and then you eat a normal diet that avoids these FODMAPs that upset you.
Thanks for that. I've only looked at FODMAP diets briefly, and have only found lists of foods to avoid, not the theory behind the diet. The lists seemed to cut out foods which would have a low glycemic index. I'll edit the post.
Thanks for the advice, since I have Congestive Heart Failure I have to watch my weight daily.183 plus or minus three lbs but I am 84 so who complainsI do not know the fluid intake of the diet you mention.
There's no fluid regulation in the diet as long as the fluids are low carb, i. e. no sodas, beers, sweetened coffee, latte etc. The good news is that lowering cars helps appetite control, reduces general inflammation in the tissues, so you should notice breathing and vascular improvement. Supplementing vitamin B12 will also help with inflammation reduction.
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