Is it RLS?

[Dazedallday]

Hi I'm wondering if anyone has similar symptoms to me and if anything is helping them?

After about an hour of getting into bed, a calf muscle in one leg will start to ache. Usually the same leg but sometimes the other one. The pain is spread across the whole muscle and slightly into the knee. My legs don't move involuntarily but I do get a moment of relief for a split second if I do move them. My calves are often cold to the touch, although I don't feel cold in myself. This is worse in the winter of course, and although it may be circumstantial, I'm convinced this is linked to the pain. I do definitely have reduced problems in the summer.

I've seen many gp's and a neurologist and have been diagnosed with RLS but I wonder if it's something vascular? Im currently on a mixture of gabapentin and coedine that I take once before bed. I think this helps sometimes but often has no effect.

Does any of this sound familiar to anyone? Any help or suggestions would be greatly appreciated

Thanks

[Joolsg]

I don’t experience pain but I know a lot of people with RLS do have pain.

Does it stop if you move/ are moving around? Does it stop you sleeping or wake you from sleep?

Often a dopaminergic challenge can establish if you have RLS. This is where a single dose of 100mg Levodopa is administered when you are symptomatic. If you show a better than 50% benefit then it’s likely you have RLS.

Hopefully someone who experiences RLS in the same way as you will comment in more detail.

[Jphickory]

With my RLS.... my leg will involuntarily jerk if I don’t move it first to relieve the RLS sensation. I would describe my RLS as

a deep gnawing/tickling sensation. Its an agitated feeling with my RLS but not painful. So what you described isn’t like my RLS. Best to you.

[Hidden]

Hi, it does sound more vascular than RLS.

Some thoughts on this.

If it were so then the slight movement wouldn't be likely to relieve it.

Claudication pain, i.e. due to reduced blood flow into the calf, is brought on by exercise, not rest.

Does the calf change colour, go blue or redder.

Has your GP checked your pulses, ankle and foot. You could try checking them yourself but if you couldn't find them, it might be because, not being practiced, you just can't find them which wouldn't be very reassuring.

It's clearly not a venous problem.

If it was a more general circulatory problem, you would have symptoms in other places.

Another possibility is that it's nerve pain from spinal nerves. In this case the pain would follow the distribution pattern of a particular nerve and it doesn't sound as if you're does.

Neuropathic pain, in peripheral nerves might cause calf pain. Have you been checked for Diabetes?

It might be a knee problem and the pain is referred. I get pain in my knees when I'm bed and lying flat on my back with legs straight. But I also have other symptoms with my knees cracking and creaking.

However, I'm not a doctor, your GP should have thought of the possibilities. It may just be part of your RLS, the dopaminergic test sounds a good idea.

[Graham3196]

When you see your GP ask him for a blood test for iron. If you find your ferritin level is very low then you are anemic and you should be able to get an iron infusion without any problem. If you ferritin level is not indicative of anemia then your ferritin level might still be low enough to cause RLS I don't remember hearing about a dopaminergic test but if it gives some certainty to the diagnosis then it has to be worthwhile. I thought RLS was only diagnosed by the symptoms. How do you judge a 50% improvement? If the tests indicate that it is RLS then as soon as possible get an iron infusion and get your ferritin level up to about 300 to 350 which is the latest recomendation by the experts, We are all interested in hearing about your ferritin and what happens. If its good it gives us all hope.

Cheers

Graham

[Dazedallday]

Thanks to everyone for the replies and to Graham for the list you messaged. Certainly lots of things to try and think about!

In answer to some of the questions:

I find it hard to describe the sensation I have so I often say ache or pain, but you could also say it's an uncomfortable agitation.

The sensation does stop if I move but only for a brief moment.

Yes it does stop me from sleeping and it does wake me up.

I haven't noticed a colour change in my calves.

Yes I've been checked for diabetes.

Im pretty sure the pulse behind my knee was checked but not in my foot, ankle.

I have had iron levels checked but can't remember the results.

I'm back to the gp's on Friday so I'll ask about ankle, foot pulses and iron, magnesium, potassium levels and also about the various tests and treatments or supplements suggested.

Thank you again

[Dancing_Legs]

Dazedallday I too get an ache in my calf, usually worse in my left calf. Also aching on the outsides of both hips. It definately kicks off my RLS and find I often have to get up and stretch in the night. Will be very interested to hear what your GP says.

[Dazedallday]

Well my GP visit wasnt particularly productive, but then my expectations weren't high. He checked the pulses in my feet, which were all ok. He's running the same blood tests I've had in the past but did add folic acid to the things to check after I mentioned it. My previous blood iron level was 196. I mentioned that I'd read about RLS sufferers needing levels over 250 - 300 but he just dismissed it. He suggested that I just increase my gabapentin dose, which already has been higher in the past.

I think I'm just going to work through the supplements lists that I read about in this forum. I'm currently trying selenium after reading about that, but 3 months in and no difference so far

[kika82]

Pls update us when you have back your blood test result.

I hope you feel better soon. It is very frustrating how RLS doesn’t get too much attention from doctors and practitioners. I’m sure this is a common thing most of us have experienced few times.

Good luck