rls

[springmedow]

hi I have it badly in my arms my legs not so much ,I was diagnosed with it around 10 years ago ,,looking back I think I have had it longer ,,I was on tablets for it but came off them for some reason I cant remember why ,,I was wondering if cbd would help,,i have been looking for a massaging tube for my arms that I could use but cant seem to find anything at all ,, grrrr

[Hidden]

Interesting, that there's probably a lot of people who have RLS that don't realise it. I was given the diagnosis by a neurologist about 12 years ago, but like you, "looking back" must have had it way before then. I had PLMS at least 30 years ago and only know that with hindsight. At the time, I couldn't understand why my wife kept telling me I was kicking her.

I admire sufferers who manage their RLS by apparently incredible feats of self discipline, diets, supplements, creams, exercise and the folks who use devices such as vibro pads. I took the apparently easy way and resorted to medication.

I'm sorry I can't help with any information about massage tubes.

[springmedow in reply to Hidden]

there seems to be no permanent cure ,I was told it can be hereditary ,,I think my gran had it even though she wasn't ever diagnosed I remember she could never keep her arms still,, also I don't think there is any such thing as a massaging tube for arms ,, I have looked everywhere ,,,, I'm hoping some one will invent one ,,,,,

[Hidden in reply to springmedow]

Yes, you're right, unless it's secondary RLS, (caused by some other condition), there is no cure. There are genetic factors but they're not straightforward. From what I've read, several genes may be involved and the way they interact is complicated.

Since gene therapy has only recently become a possibility and RLS not exactly a popular subject for medical research, it's probably going to be a long time, if even ever, before there's a cure.r

Perhaps you could get very rich if you invented a massage tube!

[Graham3196 in reply to springmedow]

Hi It depends on what you mean by a cure. If all the symptoms go away is that a cure? I have been very successful in moving from severe hereditary RLS to mild annoying RLS and I still have expectations of getting rid of it altogether. There are so many things that help someone else that you just have to keep trying to find the magic triggers that you need or that you have to avoid. It can be a long search but giving up is not an option

[Hidden in reply to Graham3196]

A medical definition of cure means completely eliminating the cause of the symptoms. A treatment which cures a condition only has to be applied until the cure occurs. After the cure the treatment can be stopped and no symptoms return.

Any treatment which relieves symptoms even to the point that they entirely disappear, but does NOT cure the condition is known as symptomatic treatment. (or palliative).

Symptomatic treatment may have to be constant and/or permanent. If you stop the treatment, the symptoms return.

This is another example if where our use if language, (or misuse), can have a major impact on our well being. For example it is a fairly common phenomenon for people prescribed medication for newly diagnosed type 2 diabetes to stop taking the medication because they think they are "cured". Of course, they relapse. Such "non concerdance" (not taking medication as prescribed) is recognised to cause significant costs, both in terms of a person's well being and economically.

There is a significant difference for people diagnosed with cancer whether they are told treatment is "curative" or "palliative".

Realistically, from a medical point of view, there is no current "cure" for RLS only remedies to relieve symptoms.

When I was prescribed Pramipexole for my RLS in 2007, although I didn't consciously think it, I "felt" as if I was cured. Now I'm quite clear Pramipexole did NOT "cure" my RLS. It would have been better if I'd been informed of the possible consequences of taking Pramipexole.

Apart from that, it's a personal theory that the use of the word "cure" in relation to RLS is a part of what I would call the "disease model" of RLS. A disease model is the idea that "normally" we are in a disease free state and then we "catch" or are "infected" by a disease agent which causes negative changes. We "fight" the disease to get rid of it, so we can return to "normal".

The significance of this that it appears reasonable to "struggle" with the disease or its symptoms. My own experience of RLS and observation of what others say about their experience, is increasingly led me to think that it is better to "accept" RLS rather than "struggle" with it. It appears to me that people who accept it generally have a better experience than people who struggle.

Part of acceptance is recognising that there is no "cure" and we will never return to "normal". Acceptance however does not mean "giving up" and it can also lead us to finding a "new normal". Which includes doing things to relieve the symptoms.

The concept of "new normal" is not mine, I borrowed it from a cancer charity. I also recently read about ACT, i.e. Acceptance and Commitment Therapy which is aimed at helping people to stop struggling with their condition and for which there is some evidence of benefit.

Sorry Springmeadow, gone off on a bit if a tangent here.

[Shelhelp in reply to Graham3196]

How did you go from severe to mild? My husband is very severe and has been this way for over 30 years!

[Graham3196 in reply to Shelhelp]

Hi I am lucky in that my RLS is diet related. I've had RLS for about 60 years and for the first 30 or so it was controlled by taking some fairly unhealthy over the counter medication, Then it started becoming worse until I was sleeping about 2 hours per night, every night. I tried some diet things and found possible slight improvements so I went to a gluten free diet and there was a significant improvement. The it was suggested that I try an exclusion diet to try to determine what was triggering the RLS. The only diet I had heard about was the Monash hospital FODMAP diet so I tried it and after a fair bit of learning I had a great improvement. There are other diets but one that might be appropriate is the Low Chemical diet from the Royal Prince Alfred Hospital in Sydney. I will send you more details by a private message because I have a long list of things to try that have been recommended over the last few years in this forum.

Graham

[Hidden]

Hi!

What about a compression sleeve? Would that be worth a try for you? I have compression stockings for my legs which help to some extent, so I started using the same principle once m RLS spread to my right arm.

[springmedow in reply to Hidden]

hi yes I do use them for my arms but some times it just will not give up

[Lovelif in reply to springmedow]

Hey please can you explain me whats compresion stockings, i do suffer mostly in my left leg and left arm, and shoulder. I am having a hard time with it. In th arm it started like two months ago I think but in the legs is been like years maybe. The arm does bother me so much I can’t find any thing to relieve the pain in my arm please any help.

[springmedow in reply to Lovelif]

hi ,, I use the arm support tube bandages size smaller and I double it ,, also getting some one to massage can help ,,I have been looking for a massaging sleeve for arms but there is no such thing ,,I haven't got the funds to invent one

[Joolsg in reply to Lovelif]

Hi lovelif

It may be better to write a separate post to get advice as most people will miss a reply to someone else’s post.

What medications are you taking at the moment, including cough medicine and any anti histamines or anti depressants?

If we learn a little more about you we may be able to help.

[Hidden in reply to Lovelif]

Hi!

I realize this is to springmeadow, but can I jump in here with an answer?

Compression stockings are the same as support stockings. They are designed to be tighter than regular stockings in order to help increase circulation, etc.

Here is a website explaining what they are and what they can be used for:

en.m.wikipedia.org/wiki/Com...

I use mine to help calm my movements; it works quite well most of the time. These stockings can be found in pharmacies.

I also use magnesium oil and a homeopathic cream called “Relaxing Leg Cream” by Magnilife.

magnilife.com/product/magni....

This can be found on Amazon UK.

[Hidden in reply to Lovelif]

Lovelif, I know that some people experience pain as a result of RLS, I'm also quite pedantic about our use of language, particularly having indulged a little in linguistic philosophy and epistemology.

I know that when some people use the word "pain", they do not mean they are having the same experience I have when I have what I call pain. Pain is very subjective.

Petsonally, I have never experienced pain, (apart from transient muscle spasms) as a result of RLS.

To cut a long story short, when someone says they have pain because of RLS, I always think, is it really RLS? Maybe there's something else causing the pain.

Hence, are you really sure the pain in your arm is RLS and not due to something else? Have you seen a doctor about it?

[Sara_2611]

hello spring meadow

I had a bad attack of it last night I put some Balneum cream on my feet. A few hours later it started up again so I put more on & this time on my legs & finally I got a good nights kip

[Lovelif in reply to Sara_2611]

Sara please whats balneum cream. I am having a hard time with my arm.

[Graham3196 in reply to Sara_2611]

Balneum Plus seems to be more designed for skin conditions like itching and psoriasis . Has anyone else found that it helps with RLS?

[Sara_2611 in reply to Graham3196]

Hi Graham

Although it is good for me - I have to say that it may not be a solution for everyone as everyone's skin is different - & thee may be a risk that anyone using it could realise that they may be allergic to it

Anyone deciding to try it does so at their own risk -I felt it important to put that out to my fellow sufferers

[Graham3196 in reply to Sara_2611]

Thanks. I think anyone trying anything that's not prescribed by a doctor should understand that the risk is theirs and they probably should confirm with their GP that its safe for their particular state of health. Even a diet might harm you (Perhaps especially a diet)

Thanks Cheers

[Sara_2611 in reply to Graham3196]

Yes I agree -I have this on my prescription regularly - it starts up in an evening-sometimes I dont get it at all therefore I dont put any cream on at all

Thanks for the reply

[craigm1114]

I have not tried cod or messaging., I just went back on ropinerole (Requip) until augmentation tears it’s ugly again again. I have read that nathoxetone (so) that med that stops heroin overdose cold is supposed to keep augmentation at bay. Keep on keepin on

[Sara_2611]

Eek Even as Im messaging you now mine has started off - I think because Ive been for a long bike ride. Im going to put some Balneum cream on my feet when I go to bed