Does anyone else have Hot Feet with RLS?

[TwitchyFeet50]

Hi Everyone, It's so interesting to read everyone's experiences with RLS. I have had RLS since I was about 15 (I am 50 now). I used to call it "Hot Feet Syndrome" because I had never heard of RLS, and it is only my feet that are affected. My feet get super hot most nights, I have to sleep with them sticking out of the covers and have a fan directed on them. I also get the typical creeping "itchy bones" feeling in my feet, where I need to bang them together or get up and walk around, massage my feet, etc.

I also have insomnia - possibly initially as a byproduct of RLS, but also maybe now just part of the aging process. I have been on 1 mg or less of Clonazepam for a long time (over 15 years), and it really worked well for many years, but over the past 3-4 years it is much less effective. I have tried to wean myself off of it but the RLS gets unbearable so I feel like I am damned if I do, damned if I don't. I am not willing to increase the dosage to greater than 1 mg, in fact most nights I try to take .75 mg.

I have tried acupuncture, which seemed to help at first but I am not sure now. I don't drink alcohol (or if I do, I just accept that I will have a horrible night) and I try to limit caffeine, and only drink tea in the morning. Magnesium oil is a recent discovery that has helped me quite a bit, albeit temporarily. I rub it into the soles of my feet in the evening before I go to bed and then often I wake up at 2:00 or 3:00 and have to reapply or soak my feet in cold water because of the heat. I used to tie ice packs to the bottoms of my feet but it's awkward to sleep that way!

I have found that THC tincture might be helping with the insomnia a bit, but I am very sensitive to it and if I take too much my brain just gets super active and busy. I have had some success just with 5 or 6 drops under my tongue - Absolute Xtracts Sleepytime THC tincture if anyone is interested. I am not so sure if CBD helps or not, but I am also trying that recently.

For my hot feet I am waiting anxiously for a package to arrive of a cooling CBD and Magnesium cream called Magsoothium. It also contains arnica and menthol. I am really looking forward to trying it and will report back once I have given it a try.

Sorry for being so long winded. I look forward to hearing anyone else's experience with "hot feet syndrome".

[RoadRunner44]

I was particularly interested in your post as I have a kind of neuropathy in legs, feet and arms. I suffer with a burning kind of sensation on my feet. Not every day or night but sometimes which is very uncomfortable. I also have very cold feet at the moment which is so uncomfortable too. As I'm prediabetic I wonder if these foot problems are connected to either the neuropathy or prediabetes.

I have purchased some of the magnesium oil but found it didn't make any difference to me. If you find a solution I'd like to know.

Cheers, 😃

[glamourcat]

Hi

I also have RLS and recently developed very hot feet. I too bought ice packs and wraps to put on the soles of my feet. I don’t know if this is definitely Linked to RLS or not but would love some advice too.

Many thanks

Suzy 😊

[silkusmaximus]

Dopamine affects the bodies ability to regulate temperature but from what you've said you're not on any dopamine agents. I take Ropinorole and used to get terrible sweats if I took too much I'd feel to hot so I'd take the duvet off, then I'd feel cold...would go on for ages....I reduced my dose and that stopped.

[Hidden]

If you only get symptoms in your feet then I'd say this is not RLS.

If you don't get the "urge to move" which is the principal defining characteristic of RLS, then you don't have RLS.

This may be a neuropathy or circulation problem.

Clonazepam is not particularly effective for RLS, it can help sleep, but doesn't really affect RLS symptoms. If clonazepam "worked" for you, it doesn't mean you have RLS.

I hope you find the remedies you're trying are effective for you, but you might want to see a doctor to get a more accurate diagnosis.

[TwitchyFeet50 in reply to Hidden]

Hi Manerva, I definitely do have the intense urge to move, hence the banging together and rubbing my feet. If I don't move them, I get an unbearable "jolt" that shoots up my legs. Pretty sure I've got RLS, and so have numerous doctors. I have pretty classic triggers from what I have read - alcohol, caffeine, benadryl. Wish I had never been prescribed Clonazepam since it's so hard to get off of, but yes it did work for the RLS symptoms for a long time.

I do not know, however, why my feet are so dang hot much of the time.

[Hidden in reply to TwitchyFeet50]

Thanks for confirming that.

It remains unusual to have such apparently severe symptoms only in the feet but it may be possible. It may also be possible that the RLS-like symptoms are due to some other underlying condition e.g. neuropathy or circulatory.

One of the diagnostic criteria for RLS is that all other explanations for the symptoms are eliminated. I wonder if any alternative diagnoses were discussed with you.

This is significant because if this is not RLS then the usual remedies for RLS won't work.

Has any doctor tried a test dose of L Dopa to confirm the diagnosis? Usually taking a dose of L Dopa controls RLS symptoms within hours. If it doesn't work then it's probably not RLS.

If you're convinced that it is RLS then apart from magnesium there is a range of non pharmacological remedies you can try.

The first thing you might consider, if you've not already done so, is to have a blood test for ferritin. It's quite well known that RLS is associated with brain iron deficicency and this can be indicated by ferritin levels. 50% of RLS sufferers benefit from raising their ferritin level to at least 100ug/L. Some RLS experts advise it be up to 350ug/L.

This can be done by taking oral iron, but it's not easy or quick.

Some of the usual remedies don't seem appropriate for you e.g compression stockings, hot baths. A vibrating pad might be of help, but with this, symptoms re-appear more or less as soon as you stop using it.

Vitamin B12 and vitamin D supplements might also help. So might celery juice (tablets).

Avoiding "triggers". If you're taking any medications for anything else, there is a long list of things that can make RLS worse that should be avoided if possible.

Some people find what they eat and drink affects RLS. Alcohol is a very common trigger. Caffeine is for some as is refined sugar. Some find a low carbohydrate or low oxalate diet helpful.

Most non-pharmacological remedies require trial and error and may take quite a while to work e.g. for iron, it could be months. Also if you try several things at the same time. if anything works, you won't know what it is.

If the symptoms and lack of sleep are seriously affecting your life and you want a more immediate solution then you may need RLS medication. Clonazepam is not RLS medication.

If you do consider taking medication, this is a minefield and I suggest you seek further information before making a decision. If suggested by any doctor, I'd say if they advise a dopamine agonist you ask for a gabapentinoid first., especially if you have insomnia.

Dopamine agonists have a high risk if causing a condition known as augmentation. Something a lot f doctors have never even herdr of.

It's no criticism of anybody, but doctors, even neurologists don't get much training about RLS and they may also not be up to date with RLS developments. Some people are diagnosed with RLS when they don't have it and some people don't get the diagnosis then they should have it. More signficantly most doctors are quite ignorant about how to manage RLS pharmacologically.

Obviously I dont know the icrcumstances but if any doctor diagnosed RLS, I'm nor clear why they wouldmprescribe a shortterm sleeping aid i.e. clonazepam, rather than a RLS medication.

You might find this link helpful.

uptodate.com/contents/treat...

[TwitchyFeet50 in reply to Hidden]

Manerva, thanks for the advice. It is a lot to chew on, particularly during this crazy pandemic. I will carefully read all this great info that you sent. My doctor did, in fact, give me an RX for a dopamine agonist- Ropinirole. I only tried it a few times because I felt so groggy after using it and didn't at all like what I was reading about it. I am really uncomfortable with medications in general- all the side effects and the possibility of addiction and augmentation. But I will read about gabapentin.

Thanks again for all the time you have taken with me.

[Hidden in reply to TwitchyFeet50]

I'm afraid gabapentin can also produce dependency, but that's not the same as addiction. It does have it own side effects. However, in the longer term, it does not cause augmentation.

[dormarpor]

I have found acupuncture beneficial for RLS but mine is in my shoulders and arms, I am on Pramipexole for it, recently it started to get unbearable so spkoe to my Dr who asked me to reduce my amitriptylene from 3 to 2. Since doing that my shoulders have been a lot better. Acupuncture has been very good for my non sleeping, improved it greatly up to the lock down, can't wait for it to be over and things get back to normal again.

[Hidden in reply to dormarpor]

I'm a great supporter of acupuncture and have found it very beneficial for my neuropathy. Generally speaking, it's not partiularly good for RLS symptoms but can be a great general benefit.

Amitriptyline like all tricyclic and SSRI antidepressants is known to make RLS worse. Good that your doctor has reduced it.

If you're taking amitriptyline for pain then there are alternatives that are actually more effective.

If you're taking it for depression, it would be better to explore non-pharmacological remedies for depression. In most cases of mild to moderate depression antidepressants should only be used short term.

If really necessary, then there are "RLS safe" antidepressants.

If you're taking pramipexole and getting RLS symptoms in your shoulders then it seems the pramipexole is no longer working. Furthermore, it appears thst you may be suffering or at least started to suffer augmentation.

The only effective way of dealing with augmentation caused by pramipexole, or any other dopamine agonists, is toneither reduce the dose significanlty or stop annd switch to an alternative.

You can read aboiut augmentationnhere

sleepreviewmag.com/uncatego...

and here

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

Its because of augmentation that dopamine agonists are no longer the preferred first choice of teratment for RLS.

[Hoochybaby]

Hi I too suffer from hot feet but not as severely as you mine started roughly at the same time as my rls got severe but I don’t think the two are related? I suffer from dry skin particularly on the feet and use moisturiser most days on the feet with some relief. I feel as though my feet are loosing feelings at times it’s difficult to describe the feel worse in the evening particularly if I’ve done a bit of walking and I try to bathe them. It could be due to the fact that I take a beta blocker or a blood thinner I’m not sure I did mention it to my gp once but he ignored it so I just haven’t bothered since I’ve just put it down to old age?

[RachelMary77]

Hi TwitchyFeet!

Let us know how you get on with the cooling magnesium cream that sounds great!

I too have unbearable hot feet that come with my restless legs (I’m taking pramipexole but have had the hot feet also before taking meds).

I get so hot at night my husband can’t touch me as he says I’m like a radiator!!

Like you, I have tried acupuncture (I had 6 sessions) it helped to relax me but got quite expensive and didn’t really improve the restless legs.

I’m reading a really interesting book at the moment about microbes in the gut, and how they can affect the vagus nerve in our bodies (it runs from the gut to the brain) and this also controls chemicals in the brain like dopamine that control nerve function.

I really hope more research goes into this terrible, debilitating condition as it seems so common, there must be a cause...and a cure.

[TwitchyFeet50 in reply to RachelMary77]

Hi RachelMary, I have been using the Magsoothium Cooling cream with some positive results. My trick for several months has been to sit with my feet in a cool tub of water and 2 cups of epsom salts every evening before bed for at least half an hour, followed by the cream I found on the internet called Magsoothium Cooling formula. It contains CBD, arnica, magnesium, and menthol. I rub it generously into the soles of my feet and then wear thin short socks to bed until the lotion is soaked in. It's really helped me a lot with my symptoms.

[RachelMary77 in reply to TwitchyFeet50]

Thanks for the tip, that cream sounds very soothing, I will check it out

[ziggypiggy]

Right there with you. Best relief for burning hot feet I received was from antidepressants. Paxil and Cymbalta were the best. Unfortunately they both made my RLS worse. So I had to choose the lesser evil. Lately though, my burn feet have been so bad I'm about to go back on an SSRI just for some relief even though my legs will suffer.

[Apricottoby]

Yes! Did you ever get any relief? Hot feet was were it all started for me. My feet would burn so bad I would have to put my feet in cold water at night sleep with an ice pack and sleep on my leather couch so I could move my feet onto the cold surface. This began after my first pregnancy and progressively got worse. My feet then started to twitch and pulse in pain and constant urge to move my legs. I lived like this for 10 years circulation/bloods was often checked with no cause of why this was happening until I was prescribed Ropinerole which really did change my quality of life. Basically I could go to bed and fall asleep with no hot feet, urge to move and pain. I’m thankfully still ok but I was changed to pramiplexole due to the shortage of 0.25 dosage of Ropinerole in the UK and it’s not working the same. I have no pain etc but can still feel it all happening (if that makes sense) and my tiredness is off the scale. However, I’m not prepared to up my dosage so really hoping that 0.25 (advartel) Ropinerole becomes available to me again.