RLS

sarah1282 said:

Today at clinic I was diagnosed with restless leg syndrome. My hbac1 is 6.8
Does having rls mean I have nerve damage and would an emg/ncs test show that. Im very confused.

Type 1

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Hi Sarah I'm so sorry to hear you have been diagnosed with RLS. I have suffered this horrible condition for many years and a few years ago put on medication. Have you seen your GP yet, to have a blood test for iron deficiency or has that been done already?

I take Ropinirole tablets, before bed and also during the day as my legs are well, pretty bad ( as I am writing this, the left one has started :x ) The tablets I take are actually for the treatment for Parkinson's disease, when I asked my GP about this he said, there is no evidence that people who suffer from RLS will get Parkinson's even though both are affected by the brain. The tablets are a group of medicines called Dopamine agonists, it acts in a similar way to the natural substance called Dopamine in the brain. RLS is also called Ekbom Syndrome.

It's more common in females and also people with diabetes. I am also type 1, for 24 years.

I hope you can get some help with RLS, please don't suffer with this awful condition, there is help.

Good luck, with best wishes

RRB

I was diagnosed with diabetic amyotrophy, but also get awful RLS all day all night... With one exception...

The more activity I do the less RLS I experience. It is chronic as soon as I stop and sit down or go to bed, and also with the DA its horrible.

I am having an EMG study being done soon, as this should have been done at diagnosis of DA. However, the pain clinic consultant did say it would be painful whilst being done, but that it would finally confirm whether my legs (hips n top half front of legs) is muscular or nerves.... ( havent had the appt come through yet though..it takes 2 weeks for letters to be wtitten!)

sarah1282 said:

Hi robin thank you so much for your help you have no idea how much better I feel knowing someone understands what im going through. Im gonna see my gp asap. Its getting to the point where I wanna chop my legs of and smack them against the wall lol. Im lucky as it doesnt wake me up even though it takes me at least 2 hours to get my sleep grrrrr.


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Hi I know exactly what you mean with the legs, I have been up many a times during the night and saying For god's sake stop, give me some peace and other darker things I have thought. I also get it in my arm, but milder. Before medication I couldn't even sit down for a length of time with out my legs jerking and the horrible pulling sensation.

In the meantime, I found at night that if I did something that took my mind off of the RLS, like cleaning out a cupboard, a drawer, preparing a dinner for the next day or getting washing sorted that helped a lot more than just walking about, because it takes the mind off of the actual condition for about 30minutes. Massaging the backof your calves may help, also shaking the Restless leg, then stretching and repeating a few times can help.

I went to the cinema with my daughter in the summer hols and I took one 500 microgram of Ropinirole but half way through the film, one leg started. so I went into the ladies and shook my leg, then walked up and down the foyer, back into the ladies more leg shaking, behind cubicle doors, and walking about up and down the foyer again. It's a miserable condition. I have recently been in hospital, a nurse suffers from mild RLS so I showed her my Ropiniroleso she could write it down and I then said if I was told I could take only one medication and nothing else at all, I would choose the RLS Ropinirole everytime, she said "oh no, don't say that you need your Insulin". Tha's how bad It can be sometimes.

Take care and wishing you lots of luck and a good nights sleep.

RRB

donnellysdogs said:

I was diagnosed with diabetic amyotrophy, but also get awful RLS all day all night... With one exception...

The more activity I do the less RLS I experience. It is chronic as soon as I stop and sit down or go to bed, and also with the DA its horrible.

I am having an EMG study being done soon, as this should have been done at diagnosis of DA. However, the pain clinic consultant did say it would be painful whilst being done, but that it would finally confirm whether my legs (hips n top half front of legs) is muscular or nerves.... ( havent had the appt come through yet though..it takes 2 weeks for letters to be wtitten!)

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Hi DD I hope your appointment comes through very soon.

Have you seen your GP about being tested for iron deficiency and possibly getting some medication for your RLS ? It's a horrible, miserable condition :cry: and all I can say now, is, thank goodness for Ropinirole :thumbup:

Take care

RRB

Gp's have never listened about my legs - glad you mention the pulling.. Because even the pain clinic consultant didnt understand what I meant by "pulling" sensations.
My pain clinic consultant told me to ask for the RLS tablet, but she couldnt tell the GP to prescribe it!! So I'm going to ask next week..thnx for the name of it.
I hope appt comes thru quick. Seeing pain consultant in 3 months, so she wants me to have the EMG first, so fingers crossed!!

Good luck with the test DD. Hope it reveals what the true cause of your symptoms really is. DA is one thing but RLS as well is an awful lot to contend with. I just hope that statins haven't lit the flames on your bonfire.

Keep us updated and take care