Heat helps with RLS

[intermk]

Tonight I got up at 0245 with my typical pain after my medicine wore off. And I decided to try another natural remedy for pain called "capsaicin" in the form of a patch. I've had some luck with applying heat pads to my quads in the past but nowhere near complete relief. I would get the chemical pads and tape them to my legs and get heat for about 3 hours. All it did was postpone the onset of symptoms but that was a good thing. Tonight I am trying the capsaicin pads which are self-adhesive and cover most of my quadricep muscles. I thought it would feel hot but instead they feel cold. And after one hour they appear to be staving off the pain. I will try them for a couple more nights then report back about my findings.

[Hidden]

Hi Capsaicin, I believe, is derived from Chilli and appears to be quite a strong "counterirritant" so could relieve localised pain.

I hope it helps you, it should do.

[intermk in reply to Hidden]

"Counterirritant" is an apt descriptor. The first evening of use it felt cold upon application and throughout the next 3 hours (they are supposed to last up to 4 hrs). The second evening it felt hot like chemical burning. This may be due to the fact that removing the first patches also removed hair follicles allowing the second application of capsaicin to get further into the skin via pores (I'm just guessing). But neither application worked completely. Once the RLS symptoms become overwhelming late in the evening the pain from RLS fights the irritating effect of the capsaicin. And what a weird feeling that is. As usual the RLS pain wins the game. I'm going out today to try finding more patches. There has been a run on nearly everything here. American's are huge hoarders I guess. A lot of people are absolutely freaking out about the new coronavirus.

My goal is to have enough patches to replace the first application after 3 hours with new patches to see if the greater concentration of capsaicin will continue to stave off RLS symptoms. But at this point it only seems to be helpful when I'm mildly symptomatic.

[Hidden in reply to intermk]

Counterirritants are effective because they stimulate "non pain" nerves which in turn inhibit "pain transmission" cells in the spinal cord hence blocking pain signals going TO the brain.

These are however all "sensory" nerves.

RLS also involves "motor" nerves, nerves coming FROM the brain. Counterirritants do not inhibit motor nerve transmission.

Hence, although counterirritants may relieve pain they might only have a limited effect on other RLS symptoms.

If the capsaicin helps, that's great and I wouldn't want to discourage using the patches, but don't expect too much from them.

Having re - read your previous post I am curious about 1 or 2 things, which may or may not cast some light on your predicament.

1). You say you tried DAs ( and gabapentin) with little success. Whereas these are effective for most people for RLS.

2). You've said the only meds that have worked for you are narcotics, (by which I assume you mean opiates), and which you also refer to as "pain" meds.

3). You mentioned, apparently, having to use a "walker" during the day. The implication being that this is necessary because your RLS is so severe. I have never heard of RLS causing walking difficulty.

4). You mention that steroids helped, but steroids have little or no effect on RLS.

5). You say capsaicin works for your pain, which you associate with RLS.

I think some RLS sufferers use the word "pain" to describe their RLS sensory symptoms when actually their symptoms are not what I'd call pain at all.

I don't think this is you. I believe you, that you do experience pain.

I do understand that some RLS sufferers experience pain as part of their RLS, but I never have.

Taking all this into account I am wondering if you have RLS at all.

OR

If you have some degree of RLS PLUS some other condition causing symptoms which you're associating, perhaps wrongly, with RLS.

This may be some condition causing pain, ( and difficulty walking) for which painkillers and steroids work, but RLS medicines don't. This could be a neuropathy and/or some inflammatory condition.

It may be that you already know you have some other condition that causes pain and walking difficulty.

If you have any such a condition, and it is correctly diagnosed then you would be more likely to get an appropriate treatment.

Unfortunately if that condition was effectively treated, you may still have some RLS symptoms, but things overall, might be better for you.

[intermk in reply to Hidden]

1.Yes I have tried almost every medicine available for RLS. Was on Mirapex for a while and it seemed to help somewhat for about 3 months then suddenly it stopped helping in the least. Doc had me on gabapentin when it first came out. We were both very excited to try it because it sounded so promising. We increased the dose to maximum rather quickly – over 3-4 months I think, with no help at all. The most recent drug they had me on was pregabalin and it showed some promise at first. But they had me on a second med, the name of which I can’t recall. So I’m not sure whether it was pregabalin, the other med or the combination that was somewhat helpful. Even after going beyond max suggested dose I couldn’t get pain relief at night and eventually it became worthless even during the evening hours when I had more moderate symptoms. After that I did my own thing and went to Kratom use. That took me several months to find an effective dose but I was only having constipation so I kept going up on the dose and eventually found a level the allowed for complete cessation of RLS symptom’s and disability. I got up to 8 hours of sleep the first several nights. That scaled back to 7 hrs, then 6, where it stayed for many months. Still using Kratom now but I think augmentation is at hand. I get very little relief and the side effects now include a miserable dizziness. So it’s clear that at least tolerance is an issue and that I am at a toxic dose(TD) to get an effective dose (ED). I worry that the lethal dose (LD)is not far off. Hence the reason to look for another option.

2.When I say pain meds I usually mean anything that I might be taking by mouth at any given time which could include the narcotic imposter Kratom (or quasi narcotic). When I use the term narcotics, yes I do mean opiate derivatives.

3.Yes I do need a walker to get around at times. But not at all when I have short term narcotics available including Kratom. I need the walker to help me stay upright at night when I have to visit the bathroom because I am somewhat dizzy from the Kratom. During the day, usually early morning hours my legs are so exhausted that I can’t stand on them. They just don’t hole me up. And I exercise regularly by cycling, hiking, Stairmaster and weights. My legs are fairly strong for my age but no match for the devastating effects of RLS. If I can get some sleep from 0600 to 1400 hours then I can walk without the walker but I’m shaky.

4.My experience with steroids is that they lessen the need for me to take Kratom often during the evening and nighttime. In fact, they decrease my need for Kratom by about 50%. Within a week to 10 days of stopping steroid use my RLS are in full swing again. I don’t know why this happens. I don’t have a lot of experience with steroids. Docs have only ordered them rarely to help me heal from major injuries or to quickly lessen inflammation. Perhaps it’s the fact that they do lessen inflammation?

5.In addition to capsaicin I’ve also tried lidocaine and menthol patches, patches with camphor , menthol and capsaicin plus patches with just lidocaine in them. None of these totally stop the pain associated with my RLS. What they do (so far), is to change the character of the pain. Using them every day for several days now I can say that they create their own type of pain which I can handle, but it’s not easy. Heat, whether chemical or from electric heating pads helps defer the disability of RLS when to me means that uncontrollable urge to move the legs fast and hard. Before covid-19 shut down my life I would go to the gym every evening to workout. Working out staves off both the pain and disability of RLS until I get home and sit down. But once you do sit down to eat dinner or just relax, the pain hits fast and hard. So it’s worse when I delay the onset of symptoms. I’m using the heat pads now because I am stuck at home in a little apartment. I’m never free of RLS symptoms. But they are manageable during the day between the hours of 1100 – 1600 only. They begin to build after that time-frame.

6.It’s interesting that you suggest that I might not have RLS at all. Interesting because my primary care doc has recently started wondering the same thing. He’s wondered if it might be fibromyalgia. We have recently ruled that out. But the neurologists I’ve seen and I’ve seen 7 of them; all say it is RLS and that my three sleep studies prove that. One senior neurologist, practicing for 37 years says he thinks I have the most severe form of RLS he’s ever seen. When I tell primary care docs about the arm pain along with facial issues such as blepharospasm and bruxism they immediately think it’s not RLS. But they go with what the neurologists tell them.

7.The pain is excruciating for me. It feels like several things are happening at once. One woman described her pain as millions of little worms crawling around under the skin along with an acid like burning. An apt description for sure. That’s how I feel along with aching pain as if someone has beaten my legs and arms with a baseball bat.

[Hidden in reply to intermk]

Thanks for sharing that detail.

Your case seems to be quite complex.

The description you give of your "pain", i.e. millions of worms and burning sounds exactly like my experience of the RLS sensation.

However, this sensation which you identify as "excruciating", for myself I would identify as being "unpleasant" and for me is NOT pain.

Just to make that clear, the same sensation that you find painful, I do not.

The principal defining symptom of RLS is the "urge to move". Principal defining means this is what RLS is. If you don't have this symptom, then you don't have RLS.

I don't find my RLS sensation painful, but I do find it an overwhelming urge to move. Additionally, when my RLS has been at its worst, I have experienced involuntary movements.

You've nevet mentioned this urge to move. The "pain" is yoyr main symptom, fir me, it's the urge to move.

I wonder then if you do get the urge to move.

A further defining characteristic of RLS is that when you DO move, it relieves the symptoms. Yet a further one is that the symptoms are worse at night.

RLS is diagnosed according to whether your symptoms match the RLS diagnostic criteria. If your symptoms do NOT match the criteria, they you can't say you have RLS.

Furthermore, "sleep studies" cannot, in themselves, show you have RLS. They can demonstrate that you have PLMS (Periodic Limb Movement whilst Sleeping). That is all. RLS only occurs when you're awake.

RLS is associated with PLMS certainly, but being diagnosed with it by a sleep study does not automatically mean you have RLS.

Here's a link to the diagnostic criteria for RLS.

irlssg.org/diagnostic-criteria

Again, steroids do not treat RLS. Steroids are also not painkillers. They reduce inflammation. Inflammation can cause pain and in that case, steroids will reduce the pain by reducing the inflammation. If pain is not due to inflammation, hen sterouds will have no effect.

I am not sure either way if you have RLS or not. It is possible you have the worst case ever, but I also think there may be something else going on, i.e. RLS plus -

I believe some people suffer a condition known as hyperalgesia. That might be a possible complication in your predicament. I don't know enough about this to say. It means heightened pain sensitivity.

Please do not take offense at my next suggestion, it is just that, a suggestion. I also fully accept that your symptoms are real and that their cause is physical. I do not believe you are imagining your symptoms.

However, I think you may possibly benefit from Cognitive Behaviour Therapy (CBT). CBT is useful for people suffering chronic pain. It may be useful for chronic pain where opiates are no longer of use.

I've no real answers for you, but I hope this might give you some fresh ideas.

Incidentally, "narcotics" are any drug which alter mood or behaviour and the word also implies that the drugs are used for non-medical purposes. There are many such drugs which are not painkilkers, e.g. cocaine or barbiturates. Opiates can be used as narcotics, but if used medically as painkillers, they are simply opiates

[intermk in reply to Hidden]

Yes I do and I think that may be due to my added descriptor of being beaten with a baseball bat. I can recall being hit accidentally with a bat when I was young and the resulting residual pain is very similar to what I feel now. But I'm surprised that you don't find a "burning" feeling as painful. Maybe you have a high tolerance for pain and my tolerance is low?

[Hidden in reply to intermk]

I've edited and added to my response since you replied. You need to read it again to get it all.

I can't honestly say I have a high tolerance to pain. The sensation is LIKE burning, but no, it's not painful.

I have burned myself, painfully the sensation has the same quality. The difference may be a matter of intensity or anount, but pain has an "emotional" element to it.

When I get a pain the "emotion" is one of driving me to protect myself from harm.

When I get RLS, it makes me want to move.

The worst "real" pain I experience is cramps, which luckily don't last long.

[ria25]

I put capsaicin cream on my legs. As long as I have put enough it does soothe the symptoms because it's like applying a heat pack to my legs. Even though my legs don't experience pain what they do experience is itching sensations so heat is actually the perfect thing for it. I'm doing a lot to fight the underlying condition as well, with diet, herbs and exercise.