Living nightmare.

[Boomerang83]

I am having terrible problems getting to sleep at night because my left leg in particular feels heavy and tight. I also have an urge to stretch my legs, probably part pf RLS so I am finding it difficult to cope with life as I am continually exhausted during the day time. I have also been recently diagnosed with Parkinson's which doesn't help the situation. I can't go on the way I am and I would love any constructive advice as to how I can get some quality sleep at night. Thanking you all in anticipation.

[Pagan707]

Have you tried massaging in a deep heat, ibruprofen or magnesium cream? Caspian cream is also very good. Even though it is a natural product made from chillies, it’s so strong it can only be got on prescription. There is also a family of drugs that are used as muscle relaxants. I am on diazepam which I find a life saver though many Drs won’t prescribe this there are other muscle relaxants. Smoking a small cannabis joint just before bedtime usually sends me into a deep sleep. Why it’s not legal in UK yet is beyond me.

[Boomerang83 in reply to Pagan707]

Thanks for your prompt and helpful response. A few other people have recommended massage with Magnesium oil. I have a supply of CBD oil and I am wondering if it might be as effective as the real thing. I will let you know how I get on. I have used deep heat before for sporting activities and I might give that a go. Thanks again.

[Hidden]

Sorry to hear about your plight!

Have you been diagnosed with RLS?

It's actually difficult to say from what you write whether the symptoms in your leg are RLS or not. it certainly sounds though that this is disturbing enough to keep you awake.

If this is definitely RLS, then it would be good to confirm this, then it would make it clearer what the best thing to do about it is. Simply taking a benzodiazepine (e.g. diazepam) may not help much..

On the other hand, if the discomfort is due to something else, then what it is needs to be identified.

There is some overlap between treatments for RLS and for Parkinson's Disease so it would help if you could say what medication you're taking.

There are many products that are labelled "CBD oil" and they're all different and have different contents. However, the most effective products to either help sleep or relieve RLS have a relativelyhigh THC content and aren't legally available everywhere.

Hence, if you do live in the UK, I'd suggest you don't waste money.

[Boomerang83 in reply to Hidden]

Thanks very much for your helpful response. I am not sure if it is RLS as I can go most of the night without moving my legs, it's more a feeling of discomfort due to spasm like sensations in my left foot in particular. Also a feeling of numbness which makes it feel like a dead weight. Then very occasionally I will get the urge to stretch out my legs. I notice it most when I am sleeping on my side and I get some relief using a cushion. I have only recently started taking levodopa for suspected Parkinson's and a blood thinner for an irregular heartbeat. So I am at a loss to explain where the problem is coming from. I have tried taking a magnesium supplement and a good advanced nerve support formula so here's hoping. CBD oil I have tried but I agree with you that it is a waste of time. Any other suggestions as to what I should do would be most welcome. Thanks again.

[Hidden in reply to Boomerang83]

I see that the other responses you're getting are all assuming that you do have RLS and that the symptoms you describe are due to that.

As I wrote previously it's first important to confirm -

a) That you really do have RLS

b) That these symptoms are due to that and not something else.

As for medications, it's best to avoid taking any medication for RLS, if that's what you have, if possible. There are things that can be done for RLS before resorting to medications.

In addition if it's suggested to you that you should be taking a particular medicine then you need to know the possible consequences of that before you consent to taking it.

This forum has a lot of posts from people who have suffered significantly as a consequence of taking medicines about which they knew little.

RLS is currently diagnosed by symptoms and family history only. There are no tests for it.

If there is a history of RLS in your family this increases the likelihood that you have "primary" RLS. It's ony a likelihood however.

You can see the official diagnostic criteria in this link

irlssg.org/diagnostic-criteria

There are five and your symptoms have to match all five.

The principal defining symptom of RLS is the "urge" to move. Simply put, if you don't have this, then you don't have RLS. Sometimes, but not always, this is accompanied by an unpleasant sensation.

Problematically the "urge to move" is not easy to describe or define. People with other conditions may describe their symptom as the urge, it doesn't necessarily on its own mean you have RLS.

I recently described it as like holding your breath. You try to keep still, but the urge to move just keeps building up until eventually you have to move.

The sensation is often described as creep-crawling, ants, electric currents, tingling, itching and so on.

The symptoms are worse when relaxing, sitting or lying down. It may take a few minutes before they start.

The symptoms are relieved by moving. This usally means getting up and walking.

They usually only occur at night. Especially when lying down to sleep, after which they prevent you from sleeping. Thios also means that if you lie down during the day, then symptoms don't start then.

Two other things which the criteria don't mention is that SOME people experience pain. I believe they usually say a "deep ache". RLS generally causes poor sleep, even if you're not aware of it.

The way people describe their symptoms is very diverse, so from waht you write it is possible you have RLS. I'd say it's not definite.

Why I suspect it's not -

Tightness and heaviness is not a typical decsription of the sensation of RLS.

Numbness is not typical and sounds like neuropathy. This can be spinal or peripheral.

Your symptoms seem to be related to your posture which also suggests neruopathy or a circulatory problem.

If you're now taking L Dopa and your symptoms are no better, then as L Dopa is a very effective and very quick treatment for RLS, it suggests you don't have RLS.

Summary

I'd say you need to get the RLS diagnosis confirmed.

Even if you do have RLS confirmed, the problem with your leg may be coincident and needs investiagting.

If you do have RLS find out more about possible treatments before accepting any medication : This is really important. You can learn loads in this forum.

Some blood tests might help, it's up to your doctor, but typically might be tests for iron and vitamin deficiency and diabetes.

They might also do simple circulatory and neurological exams.

[Boomerang83 in reply to Hidden]

From what I’ve read I tend to think I don’t have RLS and it sounds more like neuropathy. Thanks again for taking the time to respond to my posts. Much appreciated.

[Hidden in reply to Boomerang83]

Best wishes

[Runedrun26]

I’m taking trazodone 50mg and ropinerole 2mg then I take warm bath.good luck

[Boomerang83 in reply to Runedrun26]

I read recently that trazadone can exacerbate RSL. I have never heard of ropinerole. Can I get it on prescription?

[Hidden in reply to Boomerang83]

Trazodone is OK for RLS.

[RLSdaily]

Peppermint oil make be worth a try on you legs,

[Boomerang83 in reply to RLSdaily]

thanks for advice. I will give it a try. What about magnesium oil?

[Runedrun26]

What medication are you taking

[Boomerang83 in reply to Runedrun26]

Levodopa for suspected Parkinson’s and a blood thinner for an irregular heartbeat.

[Runedrun26]

Try ropinerole it works for me

[Guitarpickin]

I’m sorry you’re having such difficulty. As far as topical things go, from my limited experience, it is less about what you’re rubbing on/in and more about how vigorous and deep/hard you’re willing to go. The harder and deeper I am able to rub, the longer I feel relief. Though I agree with whoever recommended peppermint oil (added to a carrier oil, of course). I haven’t tried but peppermint in lotions feels amazing, in general, and it makes sense that it might help. I don’t think you clarified whether or not you’re in the UK or elsewhere, but if you are somewhere you can get THC (to take orally, not topically), it may be a big help.

[Boomerang83]

I am in the UK. I have tried CBD oil but it has little or no effect. where can i get THC?

[Runedrun26]

Hopefully a doctor will prescribe some medication for you and this will help you, don’t ever give up. Bless you my friend