Newly diagnosed with rls

[Newberryk]

Hi ya IV just been diagnosed with rls by a consultant at uclh London I'm in a lot of pain with my feet some times I can't feel my toes IV been put on pregabalin it helps at night with the pain in my legs what's the best pain relief to use as well as that

[Neil46]

Hi Newberryk, sorry to read about your pains. I have not had severe pain with my RLS just the distressing feeling that makes me keep stretching and moving my legs. I am so glad, though, that you have been prescribed pregabalin instead of ropinirol or pramipexole. You will be much better off I think. (Though if you need them both these drugs have their place if carefully managed). I am sure you will get good advice here from fellow sufferers. you have come to the right place. I hope you find relief

[Hidden]

Hi ... did you already suspect that you had RLS? I've had it severely for 60 years (but only diagnosed 12 years ago so at the other end of the spectra). My RLS is under control ATM but good drug info is available on rls.org

[Newberryk in reply to Hidden]

I get the same feelings in my legs mainly at night iv had this for 10 yrs iv also got b12 deficiency and insomnia only recently been diagnosed with both i never thought I had rls buy my consultant thinks I have by my description of the aches and pains I get in my legs

[Graham3196]

Pain in the feet and numb toes don't sound like symptoms of RLS. Are you diabetic? Who am I to argue with your consultant? I am not trying to be rude but your description seems to be so different from most others on this forum. This doesn't match the usual symptoms that are observed in order to diagnose RLS. My understanding is that RLS is not a disease in itself but is a bunch of symptoms that conform to a particular definition. That's why one man's (persons) cure is another persons trigger, almost. I believe there is a list of symptoms that result in a diagnosis of RLS on RLS.org

Is it possible that your consultant is an RLS specialist so tends to find RLS. The old saying that if the only tool you have is a hammer then every problem looks like a nail!

[Newberryk in reply to Graham3196]

As far as I know I'm not diabetic I get all the other symptoms of rls at night it's really bad I can't keep my legs still iv also got servere insomnia because of this iv had all this for the last 10 yrs

[Graham3196]

I would ask my GP to investigate other possibilities in case you have two problems and the symptoms just happen to be in the same area. My wife is diabetic and every 6 months they measure the blood flow in her feet because one of the effects of diabetes is a reduction of blood flow in the extremities and I think the symptoms of this are pain and numbness because the nerves are also affected. Of course there might be other problems that they can look for but I would encourage him/her to work harder.

Good Luck

[martino in reply to Graham3196]

This is quite possible. I am under the care of uclh in London and first went there with RLS symptoms. It turns out I have Small Fibre Neuropathy as well which seems to contribute to, or be the cause of, the pain in my legs. The fact that I have SFN is a bit academic as there is no separable treatment.

[Graham3196 in reply to martino]

That's bad news. Does that mean you have to take a painkiller for your feet and some drugs for the RLS? I have had incredibly good luck with a diet for the RLS If you search this forum for my name you will get a few posts to guide you. With a bit of luck you might have only one set of symptoms to worry about. Diets work for some but not all unfortunately.

Is there a forum on SFN? There seems to be more wisdom in these forums than in most of the professional drug distributors.

Good Luck

[martino in reply to Graham3196]

Thanks very much Graham. I have seen posts about the diet and will look again. I have a 2mg Neupro patch and 200mg of Tramulief. These are RLS meds. I do not have anything specifically for SFN but Gabapentin,which I also take, helps with both

[Newberryk in reply to Graham3196]

Thank u for your help il take a look