Please advise!

[Boomerang83]

Things don't seem to be getting better at night. While I have foot tightening and spasm like sensations during the day, I get an irresistible urge to stretch my legs at night so I can never get comfortable in bed. Sometimes I have to lie on top of the blankets to get any relief. I had a chat with my PD nurse who confirmed RLS as a symptom of Parkinson's. Since I only started my meds three weeks ago she commented that I had not yet reached a therapeutic dose so I wouldn't be getting any benefit from the levodopa as yet. She also insisted that I take my meds at exactly the same time each day. So I have to be patient by the looks of it. She said that I should expect some improvement in my symptoms in a few weeks. The problem is that I don't think I can hold out that long, I am already exhausted due to months of broken sleep and need something in the meantime to help me. Is there anything I could take in the meantime to break the cycle of sleepless nights and RLS. I just wish someone would knock me out! Thanks in advance for any suggestions.

[Hidden]

I'm very sorry, but you may not like my answers

Levodopa can work for RLS symptoms in 15 minutes if taken on an empty stomach.

ncbi.nlm.nih.gov/pmc/articl...

RLS and PD are two separate conditions and their causes are different. In addition they affect different parts of the brain.

I've never heard it said that RLS is a symptom of PD. At best, I think that's a very misleading statement. At worst, it's completely wrong.

In this post and your previous post, you have described your symptoms as tightness and spasm, heaviness etc,

You have confirmed that the levodopa hasn't relieved your symptoms.

The need to "stretch" your legs isn't typical of people's description of the "urge to move".

In my opinion then, you don't have RLS at all.

I'm sure your PD nurse is very competent and very knowledgeable about PD. I suspect he/she knows very little about RLS, and I wouldn't expect them to, so no fault there.

The diagnostic criteria for RLS are

1) An urge to move the legs usually but not always accompanied by or felt to be caused by uncomfortable and unpleasant sensations in the legs.

The sensations are usually described as creepy, crawling, ants, tingling, itching

2) The urge to move the legs and any accompanying unpleasant sensations begin or worsen during periods of rest or inactivity such as lying down or sitting

3) The urge to move the legs and any accompanying unpleasant sensations are partially or totally relieved by movement, such as walking or stretching, at least as long as the activity continues.

4) The urge to move the legs and any accompanying unpleasant sensations during rest or inactivity only occur or are worse in the evening or night than during the day

5) The occurrence of the above features are not solely accounted for as symptoms primary to another medical or a behavioral condition (e.g., myalgia, venous stasis, leg edema, arthritis, leg cramps, positional discomfort).

irlssg.org/diagnostic-criteria

If the symptoms you described are what you told your PD nurse, then it's possible that these are symptoms of PD. It does not make them RLS.

If you are struggling to sleep, it might be a good idea to approach your doctor and ask for a benzodiazepine or a "Z" drug. It is up to them, of course whether they will do this.

If it takes several weeks for the levodopa to start working for PD, then hopefully, if these symptoms are a part of your PD, then they will settle.

I appreciate it's difficult and it's also hard not knowing one way or the other, but I believe you will have to be patient.

[Boomerang83 in reply to Hidden]

Thanks so much for your informed response. I really appreciate your advice,

[Sleepylamb]

I had read years ago that people with PD can develop RLS but most people with RLS don't develop PD. I also have the muscle tightness in my calf area and my leg jerks at the same time, but started at night, not during the day. My spasm lasts about a 2 seconds and repeats about every 15 seconds. No relief until I stand up and walk and stretch my calfs and ankles. I have had this over 30 years ago, which started with my pregnancy.

The only medication relief that helped was Mirapex that is for Rls. I am on a low dose and NEVER go higher.If I had to do it all over again concerning this medication (Mirapex), I would try every way possible not to use this medication. Read up on the MANY posts about Mirapex.

Also read posts dealing on alternative routes if possible to help relieve your symptoms. Check your ferritin iron levels for example. Many posts about the ferritin iron levels. Hot baths with Epsom salts can help before you go to bed. Use one of those devices that looks like a rolling pin, but it's thinner to roll over your leg muscles before you go to bed. Magnesium for many helps.

Most have the crawling sensations, but I have the muscle tightness sensation also. I am so sorry you are going through this. I don't know if you have RLS. I hope that you don't. It's not an easy road for any of us and we all look for natural alternatives to help, but we do need our sleep and unfortunately have to resort to meditation, if we have no choice.

[Joolsg]

ncbi.nlm.nih.gov/pmc/articl... people with PD will also have RLS. See the above link. RLS is also common amongst MS patients (30%).

Until we have more research into causes of RLS we won't know the exact interactions.

I know if at least one PD patient who also has RLS. The problem then is that the drugs that help PD (levodopa) will eventually worsen RLS.

[MumofSam]

I can identify with the description of RLS as an irresistible urge to stretch. It’s another way of describing those sensations that make you need to move. I’ve often said it’s like the urge to stretch multiplied hundreds of times until it’s unbearable to stay still. So I’d say you are suffering from RLS in your legs, especially if the sensation is only relieved by movement, or stretching.