RLS

[amrgadah]

I have continuous toes movements that stops during walking & sleeping. It’s associated with severe hyperthesia & pain in toes. In the same time associated with painful ano-rectal rhythmic contractions. I tried lots of medicine with no improvement. At first I was diagnosed as painful legs & rotatory toes syndrome, now the gave me a new diagnosis of abnormal type of restless toes syndrome. Does anyone has suggestions.

[Madlegs1]

Certainly not classic RLS!

I would suspect some form of neuropathy.

Some things to do would be to check your serum ferritin level. Is it very low? Under 50. Or over 200?

Also check for possible triggers- medications and food/drink. Keeping a diary of inputs is very helpful.

The fact that your symptoms are so specific points to a neuropathic source, but the urge to move and associated relief are certainly like RLS.

Good luck.

[amrgadah in reply to Madlegs1]

Thanks a lot for your reply, I did all neuropsychological studies & nerve studies for lower limbs. I stopped statin for 3 months with no change. I didn’t measure ferritin ( what is its relationship). I’m on cipralex, but I used lots of antidepressants for around 30 years.

[Madlegs1 in reply to amrgadah]

Thank you.Ferritin can be a marker for brain iron, which for some people is a cause of RLS.

Levels should be at least 100. Otherwise need to look at supplementation.

Most antidepressants including cipralex, set off RLS. Same for statins.

So--- in your particular case, you are taking triggers that would set off RLS in most people.

That may be only a part of your story, but at least it can be investigated and measures taken to seek alternatives to those meds that won't set off RLS symptoms.

As for your other issues, I can't really help . I do think it's a neuralogical issue and hope your future investigations can throw some light on to it.

Good luck.

[amrgadah in reply to Madlegs1]

My serum ferritin turned to be 48.9. Is it diagnostic of RLS or just I need supplement. I contacted my hematologist, he asked for iron binding capacity. How long Ferritin level should reach????

[SueJohnson]

It does not sound like RLS. All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition. You meet some of these but not all.

[amrgadah in reply to SueJohnson]

Thanks a lot for your reply. I did MRI all body, EEG , EMG, all neuro-physiological studies . I was examined by a Professor of motor disorders neurologist in England . All were negative. I have no arm abnormal movements. I’m on on cipralex & statin. I tried lots of medicines during the last 3 years with no improvement. I’m now on around 4 or 5 medicines BID .

[amrgadah in reply to amrgadah]

It has no effect at all , do you think I should stop it , it’s nearly 2 years I’m using.

[SueJohnson]

Have you tried gabapentin? It is prescribed for nerve pain.

[amrgadah in reply to SueJohnson]

I’m on Gabapentin for long time reached 1600mg/day dose but know I’m only on 400mg BID .

[SueJohnson in reply to amrgadah]

If it were restless legs gabapentin is the 1st line of treatment for it and would have probably relieved your symptoms.

[Munroist]

I also can’t help thinking there’s an element of neuropathy. I’ve had what you describe and I believe it’s nerve related rather than RLS but quite difficult to be 100%. My nerve issues come from a disc touching (but not pressing on) the spine as far as the pain clinic could tell but that caused and still causes sensations in the toes when aggravated although not quite as painful as yours sound. I would consider higher doses of gabapentin or pregabalin. I’d also try to come off antidepressants or find some which don’t affect RLS (lots of posts on this forum about that)

[Zurp111]

Very bad, but not RLS otherwise you couldn't sleep...