NEED ADVICE ON RLS

[woman1]

Hi.. I wonder if anyone can help, My husband has been diagnosed with RLS, he was taking .25mg of Adartrel per night for a week but then the burning started to come through and he started not being able to sleep again.. the doctor has upped his dose ..50mg.. he has taken this for 2 x nights but has had NO sleep.. the burning is worse than ever and moved from his shins to also effect his feet arms and shoulders... can anyone tell me if this will settle down or should we go back to .25mg ??... he takes the pill at night about an hour before he is ready for bed... Also can he take a mild sleeping pill to help with his sleep ?.. how long does RLS last for... it came on more a less over night... will it go the same way ?.. Thanks

[Hidden]

Woman, does your husband just have a burning sensation or does he have the URGE to move his legs.Is this urge so strong he has no choice but to get up and walk to ease the sensations?

[woman1 in reply to Hidden]

HI Ya.. Thanks for coming back so quick... he is always walking about.. cannot sit still... has hot sweats, is now very miserable because he is not sleeping.. kicks out in bed... we are under a neurologist but just wanted to get other sufferers advice... the 1st thing is .. that he needs to sleep... Thanks

[Hidden in reply to woman1]

Some people take a combination of meds such as adartel and a sleeping pill but this would have to be checked out by your doctor first.The Adatrel is obviously not the right med for him so you need to seek medical advice as to what ekse he can try.There are many meds to try for RLS so dont suffer any longer with one that is not working.

As for how long it lasts. Primary restless legs is often inherited and sadly lasts a lifetime, Secondary restless legs is caused by something e, se such as low ferratin irom.kidney disease, or in women pregnancy. With thisvtype if the underlying problem is dealt with rls will improve.

Sometimes certain medications can set off rls the usual culprits being antidepressants, antihistamines and anti sickness tablets.Has your husband had his ferratin iron checked! It needs to be over 75.Burning type pain usually responds to gabapentin or pregablin.Hope this helps a little ..pipps

[woman1 in reply to Hidden]

Hi Ya.. That really helps.. No he has not had his iron levels tested.. will get that done.. he was on Pregablin for 2 months.. this did help with the burning but he had horrible side effects on it.... god.. we didn't realise this was something that he potentially had to live with... so depressing !!! so would you say that its ok to take a sleeping pill as long as it has o antihistamine in it ?.. Thanks again

[Hidden in reply to woman1]

Yes get Ferratin iron checked, getting this level up helps SOME people.Mine is at 80 and my RLS are severe without treatment so it doesn't help some sufferers.Most sufferers find something to help although it can be trial and error finding the right meds to suit you. Sometimes a low dose of 2 or 3 different meds work better.Yes sleeping pills help many but they very often they stop being effective after a short time and higher doses needed.I would use them but just on a very occasional basis when desperate.Take a look at a couple of websites .RLS-UK and rlshelp.org

are excellent sites, Good luck

[woman1 in reply to Hidden]

Thanks very much for your help..

[Pete-1 in reply to woman1]

Assuming your husband does have RLS an alternative that works for me is a different dopamine agonist i.e. Pramipexole (also caled Mirapexin, Mirapex and Sifrol). Different to Adartel that is. Very difficult to stop taking this class of drugs due to very unpleasant withdrawal symptoms, Bur id it works then that is better than no sleep.

[blokie]

Hi women1, I do simperthise with you and your husband,it's such an unpleasant experience and from my perspective it doesn't get any better.

I've had RLS for 5 years and it starts at any time of day or night. I've found that Tramadol 50mg does the trick for me I take 2x50mg as soon as I feel the symptoms start and within an hour the symptoms start to fade. I would see your doctor and request that you give Tramadol a try, I sincerely hope your husband finds relief on these tablets,they work wonders for me.

Lots of luck, Blokie.

[woman1 in reply to blokie]

Thanks for your advice we are talking to the Neurologist tomorrow..

[annakalia]

I take pramipexole for my rls you really need to take a look at other posts to see what other poele are taking maybe you will find one that works for your husband. I'm sorry to say yes its somthing he will need to live with unless there is an underline cause. you will find he has good nights and bad. all i can say is do your resurch i found nhs direct a good place to look. good luck.

[Hidden]

Hi, if your husbands RLS symptoms came on more or less over night, then there has to be a reason. Did he start taking any other medication around that time. RLS usually starts off mildly and for most of us gets worse over time. Can you explain the burning sensation.. RLS doesnt normally get described as a burning feeling. It could be that the med he is taking is not for him. There are other meds for RLS that maybe work better. I cant say whether or not he should take a sleeping pill, that would be down to his doctor to say.

[Hidden]

Hi Woman1, I would listen to Elisse on this one. I too tend to think there might have been a triggering event. Burning legs can result from many things including damage to nerves in the legs from trauma or toxic substances. Burning legs might also result from impaired blood flow to the legs because of a leg injury. People with certain chronic conditions like MS may get burning sensations in the legs. It's just a guess here but I would tend to think nerve damage because of the sensations of restless legs. Signals and chemicals have to be able to relay between the brain and body, or more technically, from the central nervous system (brain and spine) to the peripheral nervous system (rest of body). So a condition called peripheral neuropathy results when signals between the body, brain and spinal cord lose function. This loss of function can be caused by diabetes or long standing alcohol use or a lot of times no reason is found.

It seems that when there is a complete disconnect, such as in traumatic spinal cord injury, and subsequent paralysis, studies have shown that essentially 100% of these people complain of sensations of restless legs. If dopamine cannot travel the full length of the spinal column and through the peripheral nervous system then RLS is likely to follow. Even bumps in the road so to speak (more minor back problems) can trigger RLS in people with a genetic predisposition.

I would also make sure your husband is well hydrated and has a good balance of electrolytes ie potassium calcium. Magnesium (glycinate or citrate) is great for quieting nerves, so is taurine. And as someone suggested, iron is essential for all bodily functions.

[Hidden in reply to Hidden]

Well said, Tcho. There just about has to be a trigger that brought this on, and my best guess would be like you say- physical damage to back, legs, etc. or as someone else suggested, some new med or over-the-counter stimulant like allergy meds. Something triggered this. I know the RLS I deal with is mostly from lower back abuse for over 40 years which an inversion table has helped greatly.

[Hidden in reply to Hidden]

Aahh, not so fast with the blaming of yourself. My understanding of our backs is that starting in our 20s our discs begin to slowly degenerate, no matter what we do or don't do. A lot of us will also see arthritic changes happening to our backs no matter what we do or don't do. And maybe, most importantly, our pathetic dopamine receptors become even more pathetic with age no matter what we do.

For the vast majority of people, these age-related changes will not bring about RLS and I believe that's because upstream of their spines they have a healthy stream of dopamine. We don't, we probably have a drip. And drips may be enough if there are no interruptions along the way to the peripheral nervous system. And anything that makes that drip even less, such as anemia and certain medications will send us right over the edge with RLS. On the other hand, anything that makes that drip stronger such as the dopamine agonists, iron, possibly magnesium, methyl folate and potassium will help push the dopamine past the bumps in your spine/central nervous system and ease your RLS.

You, on the other hand, have found something that treats the bumps in the road directly. And, the inversion table may not only be treating the bumps in the road but stimulating the release of dopamine because you're upside down and off balance. And probably any diet and supplement that reduces our body's inflammation load is bound to help.

And just to support your theory about your back, there are studies out there that show that among people with MS those with lesions on their spine (versus brain) have a much higher incidence of RLS. Those lesions affect the myelin sheath that insulates the nerves in the spine. Without that insulation, electrical signals/impulses can be disrupted and I imagine dopamine as well. So yes, treating your spine is a great idea!!!

[MatthewHalliday]

Hi Woman1 I was on Tramadol and my body became addicted to them so your Husband needs to be very careful if starts taking tramadol he doesn't become addicted to them. But they did work when I had restlessness legs and arms.

[Hidden]

Hi, my RLS came on overnight, I had been prescribed Digoxin, a heart drug 2 days previously. When I came off that drug 18 months later the RLS subsided and was gone altogether after a few weeks.

So is there anything your husband has recently started taking that's new ? Prescribed or not ( a friend had several RLS episodes after taking Benelyn cough medicine !)

There are quite a lot of medications that can be triggers. I believe you can find them listed on RLSuk (someone else can hopefully confirm this).

Regarding the burning feelings, I also have this in my lower legs and feet. Mine is caused by a serious back problem which causes pressure on the spinal nerves. Could you husband have injured his back at all ?

Don't know if this will help at all, but I do hope your husband gets the help he needs.

Just a thought about the Pregabalin I had horrendous side effects from it, now on a slightly less powerful but still effective med called Gabapentin it's been brilliant and for me - no side effects !

Please keep in touch and let us know how he gets on.