Coping with RLS

[Juliamc]

Hello I am Julia, I have just discovered this forum for RLS . I have suffered this condition since childhood,I find it so disabilitating,it blights my life so much.Its a nightmare in every aspect of my life from work to traveling , trying to relax and sleep is so awful that i am near to tears. I am hoping to find information and maybe some helpful tips that could help with RLS X thank you x

[Madlegs1]

Hi Julia- welcome.

We'll need to know a bit more about your rls history- such as what medications you've tried, what you're on now and what experiences you've had with different meds.

Meanwhile - two good sites to check out are -rlshelp.org and- rlsuk .

There is a lot of good information on these to get your teeth into.

Good luck.

[beady3]

Hi Julia,you are among friends on this forum,we all have the same probs and near to tears ,write a bit more about what meds you are on and you will get help from here x

[stan38angler]

hi JULIA welcome I am newish myself but the best advice I can give you is to send a post to PIPPINS 2 what she don't know about RLS isn't worth knowing!!!! goodluck

[Madlegs1 in reply to stan38angler]

I'm not sure if Pippins would welcome taking on the whole workload of this site! 😩 - that's why it is good to share between all of us- we all have different experiences and perspectives.

Mind you- she is some authority!!😁

[Pippins2 in reply to Madlegs1]

Ha ha yes best to share it out! X

[Pippins2 in reply to stan38angler]

Thankyou for the vote of confidence Stantheangler but there are many members who know as much and much more than I do but I try to do my bit x

[Hidden]

Hello Julie It was in 1998 I had RLS so I spent years until 2013 for them to tell me at the hospital that I dident Have RLS it was Fibromygia, now it turns out I have both , there are some great members on RLS site who will give you great advise as they did me Also on the Fibromygia Foram too So I wish you all the best wishes and trust you will benefit from being here x

[Jeanniebeannie]

hi .well if you have quite bad rls as i had since child hood then the only way is medication .but you will b on for the rest of your life .cause there is no other way unless a doc comes up with the awnser as to why it suddenly happens and why it can sometimes go away as quickly or , stays there for long enuf to torment the hell out of you. there are more pple than i ever thought that have it and i dont kno why noboby has an awnser .how different our lives could be .if only

[John_naylor]

You may be lucky and have a shortage of iron or magnesium which can be solved by supplements. You may find triggers to avoid such as spicy food, chocolate (ouch) alcohol (ouch) odd items like potatoes and making a food diary can help you identify them and make life easier. Other triggers are stress, irregular bed times etc. Read the book RLS by Buchfuhrer Maning etc and become your own expert as you will need to educate your doctor. These forums are excellent. Good luck!

[Altair]

I have also had RLS since childhood - but I suspect I am a lot older than you (I am 70).

DO try the obvious things first before you resort to medications. Cut out caffeine for example. Sugar and alcohol are other things to try. I found this not as difficult as you might think. All the meds only seem to work for a limited time, although initially they might seem to work miracles, and then it can get worse than before. Look up "Augmentation".

You are not alone!

Best wishes!

[Hidden]

As Madlegs has said we need to know a bit more about your RLS. Have you been diagnosed by your doctor to confirm you have RLS. ? Have you tried any meds for RLS. Are you taking any OTC meds for any other issues you may have. There are many OTC meds or even ones your doctor prescribes that can make RLS worse. It sound as if you have Primary RLS, the inherited type, as you have said your have suffered since childhood. So, do you have a parent who also has RLS. The two sites that Madlegs has said to check are rlshelp.org and the British one is rls-uk.org. Both give good info about RLS which you will find helpful.

[lauraflora]

It depends upon your history and it would be good to know your age, as well. Many of us have had this for much of our lives, some more recently, some after spinal operations, or injuries, etc. Also what approach you might like to take - ie medical or non-medical. (tho probably you will say "Help! Whatever works, please!"

I myself prefer the nom-medical approach, and I have had quite a bit of success that way. As John Naylor says about iron and magnesium, I will add also calcium (to calm the nerves, but take with Vitamin k (mk-7 source) to keep the calcium from settling in your arteries (there is info about this online elsewhere.) An easily absorbable source of calcium, not hard tablets that don't dissolve. (I use one by Jarrow called Bone-Up which has several minerals and the vitamin k.)

I also swear by my chiropractor, to get the spine back in alignment. When it is out of alignment it presses on the nerves and makes RLS so much worse. When it is fixed and maintained in alignment, the nerve impulses are much milder or even gone. ( My misalignment comes from falling several times, since a child, on my tailbone.) Chiropractors are well versed in treating RLS, from the standpoint of the spine.

That being said there is an internal imbalance of various things like dopamine. Without overwhelming you just now, that is to be addressed as well. Others on here can explain in more detail.

I use a 2 pronged approach - chiropractic and various supplements, both of which I feel are helpful and important. One could have a 3 pronged approach by adding drugs if necessary, as well. It all depends. There is a lot of good info on here and support.

[Pippins2]

Welcome to the group Juiamc, I would ask you exactly the same questions as Madlegs and Elisse as it is rather difficult to advice without a bit of background. However you have found yourself a place where we totally understand what a wretched condition RLS can be

Pipps x

[SLMCP]

I too have had RLS since the age of 13. I am currently having great success with Pramiprexole 0.125mg x 2 per night along with codeine and magnesium citrate. I hope you find some answers on here. Good luck.

[Hidden]

Some excellent answers here, (Diet, Iron, etc and where to go to look advice on meds) so I'll not repeat them but here's my own 2ps worth.

I've had it since before I can remember, (mid 40's now) with it moving from my legs to my whole body about 5/6 years ago. I found coping with RLS to be much more than taking drugs, (which I seem to take a lot of) and diet, (between B vits, magnesium, calcium, borax, multi vit, and several others whose names escape me - I'm out a small fortune) One thing on diet I will say is to avoid excitotoxins like MSG and Aspartame:

globalhealingcenter.com/nat...

Coping wise I've learned to change my thinking - instead on why me? I tell myself there are worse things to suffer with, (not minimising our suffering in the least btw I have spent many nights/mornings rolling on the floor in agony wishing I was dead so I know all about it unfortunately). Re-framing of something like this can make a big difference.

USE THIS SITE - I get great satisfaction helping others out and while doing that and it adds meaning to my suffering and that leaves me better able to accept and then cope with things. I know I have helped a number of people and plenty have helped me. There is lots of support which imho is vital and I've used the information I've learned and had reinforced by many here to make my life better. As someone said Pippins2 is great but don't forget -Madlegs1, Elisse and many others.

I've been lucky in a way that due to my health I've lost my job, (although that was a cruel blow) which means if I don't sleep for a night or a couple of nights its not as big a deal any more. SO in that vein if you don't sleep take naps when you can. Look on it like a new mother - when the baby, (RLS) quietens down and 'sleeps' that's the time that you take a sleep. Let the house work sit, tell your friends to go home turn off the phone and take whatever sleep you can - the lack of sleep means we feel pain more acutely, our bodies are under more stress and take more damage. I think it was beady who got a good nights recently and it was joyous for her.

Hot baths and showers are a life saver - I went a year or so recently with little to no drugs, and apart from nearly killing me and destroying my sanity and that of my family I learned that sitting in as hot a bath that I can tolerate brings some relief and a little is better than nothing, take them as often as you need/can. I've stood in the shower til the water ran cold more times than I care to remember.

Two drugs non-prescribed, (well in most of the world) are Kratom and cannabis. Cannabis can be very strain dependant and many claim high CBD ones are good, I have found, er, been told that high THC ones are better. You can get plenty of info easily on cannabis - the biggest harm is its legal status so be careful if you are living outside those areas where it is illegal.

There are a number of us on this site that use these drugs effectively.

For me Kratom was a life saver - I came across it after being without treatment and it gave me hope where I had none. I used it for about 6 or so months iirc but have stopped it now as I am using a cocktail of prescribed drugs that are more or less keeping things under control, (the odd bad night but at least no bad days & nights). There is good info on this thread:

healthunlocked.com/rlsuk/po...

If you use hte search engine at the top right of the screen you should easily find more info.

Finally meditation, if you can before the legs start jittering or the pain starts meditate like your life depends on it. This will strengthen your resolve and relieve the excess stress that builds up due to the pain, frustration and insomnia. When you are in the throws of the RLS you can do a walking meditation which can help too. There are loads of guided meditations online:

google.co.uk/search?q=guide...

personally I don't like guided ones but I know many do. If you are ding a silent meditation set an alarm so you don't have to keep looking at a clock to see when you are done. It is said if you haven't time to meditate 15 minutes a day then you should meditate for an hour - good advice. If you can twice a day for 15 mins would be a good benefit.

Hope this is of some use best of luck and let us know how you get on

PS Welcome to the site btw.

[beady3]

Well Raffs that was a letter and a half you wrote well done. Wanted o say last night was 6 th night sleep am waiting for the bubble to blow,think positive x

[Hidden in reply to beady3]

Congratulations on 6 days must be a record, long may it last. Keep telling yourself that this will last. I am using the Silva Mind body technique to try and reduce the crap my body is doing to me. I am so determined to beat this f**king condition!!!!!

[beady3 in reply to Hidden]

I am sure you know some more words to go with that other and it wouldn't dare come back

[stan38angler in reply to beady3]

hi beady just wondering if you got my last message?????

[beady3]

Well Stan I hope I am safe to say rls has not been with me for 7 nights something I can do without,but the meds still make me so tiered only moan. No never got email but thanks. Back from Barmouth now How are you doing and have you been fishing this super weather. Have a nice day June x

[nitewalker]

poor girl I know how you feel have you tried DEEP FREEZE pain relief spray and gel take a substantial amount and rub it in from hip to toe sometimes helps Nitewalker!