RLS symptoms in other parts of the body?
Hello!
I've suffered from RLS on and off for about 30 years ( I'm 66). I have a motor neurone disease (non fatal) called Primary Lateral Sclerosis ( PLS), a non fatal cousin of ALS. Ive had it since around 1998. It involves a gradaual weakening of only one set of motor neurones and only affects voluntary and semi voluntary muscles.
In addition, I have degenerative disc disease quite badly in my neck mid to upper spine.
RLS was always limited to my legs, but in the last year identical symptoms are appearing in my arms ( especially mid arm), stomach and urethra. At first I assumed I had a bladder infection however tests proved negative. Sometimes ( in the last year only), that awful RLS starts in my urethra area. If my bladder gets at all full the RLS goes wild in the aforementioned parts of my body. Relieving my bladder frequently helps settle my legs down but not entirely and it returns again within 30 mins.
I find something strange is that a muscle rub in all affected areas (except urethra of course) helps only for about 5 days in a
row. After that I have to switch to a different type of cream or gel. 'Salonpas' patches work the longest but, since I have to use so many, can get quite expensive.
The other thing that helps after about a week is an ounce of pure Aloe Vera juice mixed with an ounce of 'Noni Juice', taken 3x a day for the first 2 weeks then twice daily (one ounce of each) 2 to 3x daily.
Unfortunately Noni juice can be a bit pricey but it does help. I end up sweating a lot so obviously detoxifying muscles ( perhaps helping nerve function?) is a major component.
Anyway, anyone else have RLS symptoms not just in your legs but other places ... especially bladder and urethra?
Sorry for the long read and typos. I'm having trouble scrolling up to proof read.
PLS: I am on both gabapentin and Baclofen as well as 2 antidepressants.
I found years ago that chewing gum helps with restless legs. Just recently I have found out that eating watermelon, during an episode, stops the symptoms. It has worked for me, all that I can say is try it.
How interesting,
. I am always fascinated by the alternative treatments people discover for RLS. Thanks for sharing. - Lori (Team Member)
I have similar occurrences of full bladder leads to mild rls at first, progressing worse if I try to ignore it. Usually it occurs long before I feel the need to urinate.
My Rls is also worse if I drink sodas or more than one drink of alcohol. I’m taking a magnesium glyconate supplement recommended by my doctor. Solid caps do not work as well as the “plastic capsules. But they both work eventually to tone it down. I’m also finding CBD from hemp (no thc) really helps.Hello everyone. I’ve been reading reports here for ages, but only signed up just now. I definitely get RLS in my arms at times. Too awful for words. My legs have been at me since childhood, but now I’m in my late 60s it’s pretty much my main obsession: conquer this RLS or life is insupportable. Therefore I’ve made my peace with a medium/high dose of horrible Pregabalin (Lyrica), along with with high dose codeine. I loathe and detest having to rely on heavy medication, but it’s the only means of getting shot of RLS. The thought of ever being without this relief fills me with dread, but being drugged up when I’m 80 (if I’m still here) is equally terrifying. God I wish I knew what causes this affliction. Thank you all for this community. x
Hi
. I am glad you decided to post. No one wants to be dependent on medication, especially drugs like codeine, but when your sanity and health are at stake, you do what you have to do. I hope new breakthroughs bring about safer and easier methods of release before you hit 80 or that we finally learn what causes this awful disease and get rid of it for you. Gentle hugs. - Lori (Team Member)
Oh thank you so very much for this information! I'm going to check out these links. Bless your heart!
Cheers
Thank you SO much! Support is half the battle. Byes I have a Motor Neurone Disease called PLS ( Primary Lateral Sclerosis). Its a close cousin of ALS but not fatal. I also had a stroke 2 years ago AND severe degenerative Disc Disease. I was on Clonazepam and it stopped the RLS but now , at age 66, my doctor is making me withdraw from it slowly. That may be part of it too.
Anyway thank you so much for your very helpful support! xx
Cheers
You're very welcome! Thanks for telling me a little more about your history. I'm not a doctor and can't give medical advice, but knowing that you have other conditions, it is likely that your non-leg symptoms are coming from one of them, and not from RLS. I am curious to hear what your care team suggests, so keep us posted. I'm sorry you are coming off clonezepam after such a long time. Was it not working anymore, or was your doctor worried about dependence? I have used clonezepam in the past, but only for very short periods (less than two weeks) because of those concerns. I hope you are doing OK physically and mentally as you are weaning off -- I know it's not easy! Be gentle with yourself. Sending hugs. -Melissa, team member
