Over the past 10 days or so, I’ve had a horrible creepy crawly feeling at night in my body, not just my legs but also arms. It’s happened when I’m going to sleep, but also when I first wake up in the early a.m. to go to the bathroom, keeping me from going back to sleep. Not every day, but several times.
Anyone else have this? Suggestions?
Hi, I have been having those feelings in my legs, especially my calves and sometimes my calves and my thighs, also it can be just one leg not both. What I have been doing is spraying and rubbing in the liquid magnesium also using the massager and if all else fails I can run in place or you can go on a stationary bicycle you can just March as fast as you can
. Has anything changed in your diet. Are you eating more fruit since it's the fruit season right now? I know that Park bear doesn't agree with me but I have noticed a correlation between eating more fruit and eating more grains and RLS. I posted an article before but if you Google RLS and lectins it probably will come up.
And again for all I know it might be related to Parkinson somehow too. Mary
The odd thing for me is that it’s a full body sensation, not just legs. I tried the magnesium spray, didn’t help much. I should probably get up when this happens an move around as you suggest, I’ve been staying in bed hoping it will go away. Lol. I’ve been eating more chocolate, perhaps that’s it.
I find it odd that there is very little information about this on the internet as related to PD, despite being a common symptom.
Supposedly nobody knows what causes RLS. That's why I found this hypothesis of RLS is caused by lectins very interesting.
Yes, interesting. Here are some other possible causes.
I take Repinerol for restless leg syndrome. it works like a charm.
Actually, chocolate contains xanthines (e.g., caffeine, theobromine, theophylline), which in excess OR in sensitive individuals can cause side effects: restlessness, insomnia, palpitations. . ? I can't eat dark chocolate in the afternoon or evening for that reason.
Good to know. I’ll stop the chocolate for a while, see what happens. Thanks.
> Park bear doesn't agree with me but I have noticed a correlation between eating more fruit and eating more grains and RLS...
>hypothesis of RLS is caused by lectins
If by lectins you are referring to Steven Gundry's Plant Paradox, it has been soundly refuted - his references do not support the claims he makes for them. Could diet make a difference for RLS or PD? Sure.
All the research that you do have you come across suggestion of the cause of RLS?
Both iron deficiency and dopamine dysregulation are implicated in RLS. You may have a normal level of iron in your blood but not enough in your brain tissue. Many, but not all RLS patients are found to have this iron deficiency in brain tissue when autopsied.
hopkinsmedicine.org/neurolo...
ncbi.nlm.nih.gov/pubmed/175...
Iron supplementation often helps. However, it's probably not a good idea for PD patients to supplement with iron. People with PD generally have excess iron in their brain tissue, which may be toxic to neurons.
cureparkinsons.org.uk/News/...
parkinson.org/blog/science-...
And this one is interesting because this research shows elevated iron in some areas of the brain but "There is a region in the lower brain called dentate nucleus, which is normally iron rich. Yet, our whole-brain approach indicated decreased iron content in this area in Parkinson's patients - extremely so in some individuals."
medicalxpress.com/news/2016...
Gosh, hard to know whether more or less iron would be better then.
I have not studied the RLS literature so I defer to rebtar's comment.
I am acquainted with someone with RLS and find it interesting that levodopa alleviates her symptoms and that it may have been triggered by a toxic exposure. So a couple of similarities to Parkinson's.
I'm sorry to hear that and hope you feel better soon! I hope the more experienced people in this group can help you. Blessings! Paul
rebtar,
If it actually is RLS, some people find relief in drinking tonic water with real quinine in it.
A B-vitamin multi with a significant amount of niacin in it may also be useful.
A very absorbable form of magnesium such as magnesium glycinate may also be helpful or an epsom salt bath right before bed will let you know quickly if magnesium is going to be helpful.
Some people find relief by taking a quality multimineral supplement.
As you can see, all four methods are trying to replace something that may be deficient in your body.
The anti-inflammatory effects of a high quality fish oil may be useful also.
Art
I take magnesium glycinate already. And fish oil.
That leaves niacin (there's some in the B complex I take but not much), the miltimineral supplement and the tonic water. I assume it's the quinine in the tonic water that could help -- perhaps quinine drops are just as good?
I think the water form may be the better way to go. This might help :
quickanddirtytips.com/healt...
Art
Cool. Thanks Art.
Although restless leg syndrome is often seen in PD, apparently the restlessness may not be limited to just the legs according to this case report :
ncbi.nlm.nih.gov/pmc/articl...
Art
Hm. Mine feels like whole body, esoecially legs but also arms and trunk.
Yes, I got that, but the report seemed to suggest that the restlessness could potentially appear anywhere in/on the body. Is it an overall restlessness or is there some feelings of pins and needles or crawling skin also?
Inability to keep still, creepy crawly feeling in muscles makes me need to move to relieve discomfort.
You sound similar to the definition for antsy, but also a little like anxiety or and still more with the crawly feeling? Any luck with the tonic water? Please let us know what your mystery turns out to be.
google.com/search?q=antsy+d...
Art
Try having a big glass of wine or apple cider or beer with dinner and another an hour before bed . natural ancient remedy for restless legs and about a thousand other complaints. I find that one or two with lunch helps with my afternoon rest (nap) also.
I am serious
be happy
Yes I have been diagnosed 7 years and just started to notice a creeping feeling in my legs thought I was overdoing it on my bike not sure
What medications are you on?
Are you asking me or jeffmayer?
Rebtar.
C/L usually 2 1/2 tabs per day, 25/100. Rasagiline. Citalopram. Mirtazapine.
rebtar,
I was looking at side effects of Rasagiline and one of the listed "common symptoms" is :
'burning, """""crawling""""", itching, numbness, prickling, "pins and needles" or tingling feelings'.
'feeling of constant movement of self or surroundings'
Here is the link :
goodrx.com/rasagiline/side-...
It does not say it is limited to specific areas of the body. I must admit that I have never seen "crawling" as a side effect before, but they do list both of these side effects as common.
Art
Try drinking Tonic water before bed time. It contains quinine that helps with restless leg syndrome. I hope it works for you.🙏
Have you increased yours meds lately?
No, no increase in meds.
I had those feelings before diagnosis, Mirepex stopped it. Full blown RLS seemed to develop later. I can't sleep without Mirepex.
I had RLS for years. One night I hydrated heavily right before bedtime [for a different reason] and my RLS disappeared forever. Now I have a 12 oz glass of milk every night and not a hint of RLS since.
Hi, many are commenting on RLS, but the symptoms you describe are clearly consistent with Akathisa, which I had as one the first presenting symptoms of my illness about 8 years ago.
Akathisia in my view, is one of the worse symptoms that a PWP can get! PWP who have never had this symptom, cannot possibly imagine this horrible feeling. Mine started before I was diagnosed with PD, and is characterized by an inward feeling of irritability within the whole body which just cannot be satisfied. It makes you shudder, as you search for a position, any position, that would provide some relief...but it is long in coming, so you lie there squirming and writhing hopelessly. Once it starts, the irritable feeling tends to come on in pulses of about 5 to 10 seconds each, and pulses will usually be 2 to 3 minutes apart. When the pulses start it makes you jump out of your sleep if you are sleeping, and it is impossible to go back to sleep. You lie there dreading the next pulse that you know is coming evety few minutes, and you just shudder through them.
This was pure torture before I finally saw a neurologist and started on a course of Sinimet, which stopped it. Once I have Sinimet in my system, I do not get it. But if for some reason I have to stop taking my Sinimet, in about 2 days it will come on again.
Cary
Yes, I've had akathisia too as a side effect of a medication. That's what this feels like. Very similar to RLS except its a whole body thing. really awful. For now it's gone.
DMSO for RLS...Does it work?
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What do you think of Low-Dose Lithium?
What do you think about \"Rapamycin\" 
What to do when things go wrong with PD medications?
