First post here but been reading and learning for the last 6 months or so.
I currently have 2 issues which I’d like some advice / comment on.
The 2 questions are at the end of this post, thought I’d just give some (a lot) of background. Please feel free to skip to the end.
I’ve had intermittent RLS for probably 15 years, and never even researched it or even knew it was a “known named” condition. It was ‘only on occasion’ and could go many weeks with no symptoms, when it did come it was probably only for between 1 & 3 nights. It did seem to coincide with long (5hr+) car journeys (as driver) but not always, sometimes totally random. It was an annoyance rather than something I was overly concerned about. I never really raised this with my GP.
I did have very bad ME/CFS for many years, between 1998 and 2007. I managed to work with it for 2 years but in 2000 I had to stop and never worked or did much for 7 years one thing that eventually helped was amitryptiline the neuropathic pain I had, essentially painful skin all over (like sun burn) and very clammy and with brain fog (mostly as a result of constant pain I think)
it did and has eradicated that and helped me recover from the ME. The dosage was 20mg per day which is a very low dose
At and during this time I have no recollection of any RLS symptoms
I have been on 20mg at night since that time so probably close to 20 years. I did run out for quite a few days and did feel some skin pain issues return (not as bad but noticeable)
Things started to change from Dec 2022 when a significant event plunged me into severe anxiety which is ongoing, the cause is still prevalent and out of my hands and my anxiety is very severe but I mostly can keep under control (at times)
I was prescribed a number of different SSRIs that I couldn’t deal with the initial effects so ended up upping the amitryptiline to 40mg, still considered a low dose (this was around May 2023) Didn’t really notice much of significant effect to my RLS (didn’t know of any link at the time)
Moving into Aug 23 I developed d Shingles, was very very severe and lasted 6-8 weeks. I was not taking any SSRIs and, as Amitryptiline is used as a nerve pain killer for shingles my dose was upped to 60mg.
Once it had cleared up I dropped back down to 40mg
I think I did notice more regular and intense RLS around this time or not long after, it was at this time I turned to this forum.
Been on a journey since (Nov 23) - having read that amitryptiline makes RLS worse I went down to 30mg for a few weeks, then further to 25mg.
At this time I am having RLS every day, always coming on in the evening at rest but going up a level when I’m bed. It got very bad, waking me up and not allowing me to sleep. The worst being a night with just 2 x 20m sleeps. Some nights pretty good, mainly as so tired I managed to sleep most of the night but mainly getting 5-6hrs max (but broken). I found if I didnt get to sleep within 10-15 mins RLS would kick in.
In Jan 24 I went to my GP, he prescribed Quinine which was 200mg then raising to 300mg after 3 weeks. Didn’t make any significant difference but think I tended to get more ‘restless itchy hot foot (soles) symptoms.
I had noticed in the weeks before that my RLS tended to start with an itchy, ‘creeping’ & ‘hot’ soles which also got VERY red.
This has happened EVERY DAY since, I can often ‘manage it’ walking, vertical leg lifts in bed (20m+)
I then finally decided to try and get a full iron panel test done which I had done 6-7 weeks ago.
Also was put on another SSRI (Citalopram) as I was struggling a bit only on 25mg of Amitryptaline. I have since gone back up to 30mg, still low dose and less than I’ve bred on for the last 14months.
So, now to my questions
(1) IRON (re: TSAT)
I do take a small amount of iron in a multi-bit, 14mg (very low) and regularly consume iron rich foods, bran cereal, dried fruit, nuts & seeds (with orange juice)
I did as advised on here prior to the test I can back as 116 for ferritin BUT my TSAT was 53% which the GP was concerned about and has been referred to the blood doctors (heard nothing yet, test was 6-7 weeks ago)
(2) BURNING ITCHING HOT RED SOLES
Wondering if anyone has the same or similar symptom? Or has any knowledge. Generally my feet are quite cold, when the soles are placed on a part of the leg they have always been quite cold, at least ‘cooler’. When I feel the ‘foot RLS’ comes on, my soles are very red, placing them against my leg are significant hotter, half way to hot water bottle level)
This (now) is always how my RLS starts. As well as the heat, they itch and ‘creep’ and feel a little like something is drilling through my sole. Even with no conventional leg RLS I can’t get to sleep wit it. I do often put cool moisturiser on my soles or Cetraban cream which helps to a very small degree. I have also tried covered ice packs in my soles - this does ‘eventually’ helped but my GP warned of over use of this and generally advised against it.
Does anyone else suffer from this? (There is an actual condition called ‘burning foot syndrome’)?
Is this how your RLS starts (feet itch/crawl first)?
Apologies for the length of this, just thought some background would help.
NOTE I also take a 300mg tablet of Magnesium (as Citrate) just before bed but only occasionally, maybe 2 days on, 1 off) as although it ‘may’ help initially it come back quite hard on day 3.
Also. I have tried Magnesium spray and a therapulse. Not really felt much if any relief from that
Thanks
Malcolm
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Capsaicin cream - Stops experiencing the Tingling & Burning Pain associated with Peripheral Neuropathy. over the counter and by prescription
Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation.
Instead 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...
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, 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.
Thanks Sue, have been reading your very thorough and detailed responses for many months and they’ve been massively useful.
Thankfully I knew all about the dopamine agonist situation and it’s never come up. As I say, the only thing he prescribed was quinine which I’d heard about before and probably tried copious amounts of tonic water in the past to no real effect.
I generally don’t take them any more as I stopped after a few weeks to see if there was a (negative) effect. I’ve been trying lots of ‘experiments’ particularly with timing of meds and tracking if any foods or eating times have any effect. I have learnt some things which now do and it’s not as bad as it was a couple of months ago.
I think it’s very much a case of trying things, both adding and taking away to see what works for you.
I will definitely try the capsicum cream, I’ve used moisturiser (mild), magnesium spray and Cetraban on my soles and they occasional can help ‘a little’ but only reducing symptom by around 5%
I’m now trying a hydrocortisone cream (Daktacort 2%) which I’ve used before as I had itching / burning shins. This was just ‘as needed’ and was t needed ‘that much’ but did help. I wasn’t keen to keep using it as is not recommended for long term use. I think it was soap etc that set it off and so I know smother my shins with Cetraban before showering or getting my shins exposed to water. It’s been working so I do this all the time now have since confirmed this is ok with a Dermatologist.
I’m hoping to hear from any other readers who have similar foot/sole related issues, even if it’s just the fact that my RLS now is ALWAYS preceded by this.
Also if anyone can shed any light/has knowledge or experience of high TSAT results
Yeah I think I heard that but I felt I had to do something as I would get ‘flare ups’ of severe anxiety, to the degree that I got more anxious about feeling anxious. I was allowed some Diazapam/Lorazapam (v mild, short doses, 3 days) which really helped but they (GPs) don’t like doing that as can cause dependence. Once I’d taken the edge off and stopped it snowballing I was fine for many many weeks until something triggered it off. The GP always wanted to get me on an SSRI and I’d tried 3, all were horrible in the first week or so (as they are known to be) and I came off them within the first few days.
I was persuaded to go back on one that seemed to most ‘gentle’ (Citalopram) but the first 6 weeks had some horrendous days, but I stick with it, initially 10mg them up to 20mg.
I can’t say I feel anything noticeably positive, I still get ‘flare ups’ so am reducing slightly/slowly down to 12mg. Planning on coming off completely as I monitor.
Thanks for the Buspsr information, I will look into this.
I have had RLS , since I was around 10 years old I’m now 56, I did take dopamine drugs which I augmented on, therefore my RLS is now severe , I also get burning feet , and sometime wake up with them still burning , Iv not yet found anything to help long term, I do use hemp cream which I find very affective , (5kind Extra Strong Hemp Cream ) is the one a purchase from Amazon ) I also keep a cooling mat under the bed that I can put in the bed to cool my feet .
I have been doing research and there is a condition called burning feet syndrome , which could be the RLS .
I forgot to mention that burning feet is also known as . Grierson-Gopalan syndrome. And may be linked to several other health conditions, including B12 deficiency which is also linked to RLS.
I also had burning feet while I was on a dopamine drug, mirapex. Once I stopped that drug the burning feet stopped. Maybe it’s a side effect of a drug, it was for me, just a thought. I still get the burning feet once in a while (neuropathy) but not to the extreme like when I was on the dopamine drug, which made it unbearable.
The last time I travelled and walked more than usual, I had burning soles. This was eight years ago. Nowadays I have burning on the upper part of the foot since a foot surgery and various pains. Several creams have triggered my RLS including treatment for calluses and a herbal moisturiser that contained some herbs that have anti-histaminic effect (burdock and nettle) that I used on my feet post surgery. I recently used hydrocortisone in my ears and that triggered RLS as well. I also find that magnesium triggers my RLS. I had magnesium tested so I know I’m not deficient and am getting it from the diet.
So lots of products can trigger the histamine receptors in the feet where we have lots of them, and in my case it’s the anti-histamine ones that do this as this is essentially an RLS trigger. RLS can be triggered through other pathways, too, even the ears. I know the burning must be awful but I’d be inclined to be careful about using medical products as they could be making things worse. The other thing of course as everyone else is saying is that anti-depressants are dreadful for RLS.
Yep, my RLS symptoms always started with my soles itching. Don't be afraid to experiment wildly with your diet. I've been able to resolve my RLS with a strict keto (to the point of carnivore) diet, probably because of the iron impacts. Good luck.
I have tried keto diet and did for quiet awhile and even though it helped my thyroid ( which can also be a cause for burning feet ) , it didn’t help the RLS to a great deal , although I do know Gluten , sugar and dairy can be triggers for me .
I too have episodes of burning feet a few times a week. So far I have not found what might trigger it and figure it’s the peripheral neuropathy rather than my RLS. The symptoms are different than RLS symptoms. I might take a hot shower which calms things down to help me get to sleep. Another remedy for me is using IcyHot, a topical analgesic which contains camphor and menthol. I don’t know if you can find it in the UK. Some nights it’s the burning, red feet that keep me awake rather than RLS. I take 400 mg of Pregabalin to (mostly) control my RLS. Good luck.
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