Fed up: I'm new on here tonight came... - Restless Legs Syn...

Restless Legs Syndrome

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Fed up

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I'm new on here tonight came upon the site by accident, I have severe rls and don't really know which way to turn now, I'm on pregabalin already aswell as tramadol and oromorph, I've had a liver transplant last year and I'm also type 2 diabetic, I really need help, my GP has never acknowledged I've got rls although it's on my notes, I am using a tens machine on my calves but even this has appeared to stop working now, I'm stood in the middle of the lounge now because I can't sit or lie down because it starts, can anybody help I'm desperate now

9 Replies

Both Tramadol and oromorph should control the rls.

What is the full range of meds that you are taking?

Some may be interacting with others ,or acting as triggers.

It's easy to check by googling

" 'medication' and rls"

Good luck.

Hidden
Hidden in reply to Madlegs1

I'm on anti rejection meds as I've had a transplant, so my meds are monitored closely, Also when meds are given they show alerts and or warnings of interaction on the doctors computer system, I been to docs this morning and she has increased the MG of my pregabalin, see if that works

Madlegs1
Madlegs1 in reply to Hidden

That's great, but what I'm getting at is that many medications actually cause rls. You need to check them all individually and not be relying on the doctors. They know sweet Fanny about RLS- usually.

Hidden
Hidden in reply to Madlegs1

Haha that made me giggle, you mean check all the leaflets inside the meds? What do I check for ?

Hidden
Hidden in reply to Hidden

Look at this website and the treatment page , it gives a list of meds that can make RLS worse for most people. rlshelp.org Thats what Madlegs means.

Madlegs1
Madlegs1 in reply to Hidden

You Google" 'medication' and rls" whatever med you wish to research.

It may surprise you to see what effect some meds have on rls.

For instance- most antihistamines and ssri's will set it off horrendously.

Parminter
Parminter in reply to Hidden

Check everything, trust no-one. Unlike Madlegs, who said that many doctors know Sweet Fanny, I would say something like Sweet F..k All.

This affliction is very complicated, it is also very serious.

No doubt you have specialists for your transplant, I would suggest you get a Sleep Specialist for your WED, who knows more that F..k All.

Others on this site may know who you should see, depending upon where you are.

Someone mentioned a London specialist recently - who was that?

Read everything you can on this site, and follow all the leads to doctors like Christopher Earley and Mark Buchfuhrer. The latter is to be found at rlshelp.org. He is an RLS expert at Stanford University. You can write to him through the site, telling him of your particular unique plight, giving him all the information. He will reply, and he will help if he can.

It is a horrible condition and made worse when medical professionals refuse to recognise the misery it causes. What dose of pregabalin are you on? It might be worth trying a different opioid. If you go to the Johns Hopkins University Hospital website they have a great section on rls and there is a video of Dr. Early discussing the impact of various opiates and opioids on rls which is illuminating. If tramadol doesn't work oxycontin might be worth a try. Also depending on where you live you could try kratom - I find it very helpful against rls. It's not legal everywhere unfortunately.

Dietary changes can be helpful - there are a number of people on here who are reporting benefits to a gluten and sugar free vegan diet. Also there is some evidence that taking a cup of coffee when symptoms strike could be helpful.

Raising iron levels is considered one of the single most effective means of combating rls for many sufferers but I don't know how this would interact with your other health issues. Definitely worth discussing with your health care providers though. Low iron levels (serum ferritin) can exacerbate symptoms considerably in many sufferers.

Many people find that taking a bath in epsom salts (magnesium) or taking oral magnesium also helps. Though just to show how different we all are, I find that my legs are sometimes worse after I have an epsom salts bath and madlegs who posted above has very high iron levels and still suffers with rls. It is well worth reading widely around the subject and the various things that people post about which afford relief. Experimentation is important when it comes to finding what works for rls. Good luck.

I had severe RLS for 9 miserable years. I was on a litany of drugs, some with their own side effects. Nothing worked and my GP was not too helpful. I read everything I could and finally bought a Relaxis pad. It was expensive but can be rented. The pad was designed by a doctor who had RLS. The folks there are extremely helpful and will guide you through the first couple of weeks. I now have no pain at all and only need the pad every couple of weeks. I urge you to give it a try. Good luck!

Daren

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