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Crohn's Disease Forum » Extra Intestinal Manifestations » Curious - Restless leg syndrome as a symptom of Crohn's


 
01-15-2013, 04:50 PM   #1
MJH157
 
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Curious - Restless leg syndrome as a symptom of Crohn's

Hi all, i get my results tomorrow from the MRI scan for ? Crohn's i was curious to know if 'restless leg syndrome' is a known symptom? Ive been getting it really bad, and aching joints amongst other things, i just wondered if anyone else suffered with this?
Thanks
Mandie x
01-15-2013, 05:20 PM   #2
CLynn
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I have had restless leg syndrome here and there over the years, but not certain if it is from or goes along with the Crohn's. I do know that achy joints do. I got them badly the first few years of my diagnosis, when my Crohn's was at it's worst. My GI said the arthritis like symptoms just go along with.
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01-15-2013, 05:29 PM   #3
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Thanks Cheryl, i have seen different posts about the restless legs syndrome, but not o sure myself.. Ill mention it to the Dr tomorrow
Mandie x
01-15-2013, 05:38 PM   #4
rygon
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Didnt know it was a syndrome tbh, but yeh I guess Ive had it for as long as I can remember. It comes and goes and moving gets rid of it straight away. I guess thats why I fidget all the time lol
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01-15-2013, 05:44 PM   #5
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Apparently it is a syndrome lol .... Lovingly known in the UK as the fidgets !! I get it in my arms sometimes as well, not sure if its a deficiency of something ?
01-15-2013, 06:05 PM   #6
Susan2
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Have you all tried magnesium supplements for your restless leg syndrome? I used to have it, too, but I now take magnesium capsules (one 300mg a day of a broad spectrum mag.) and it has disappeared completely. Other people on the forum have had the same result. You need to take the magnesium with something oily or fatty for it to absorb properly. I have full fat yoghurt for breakfast, so take the capsules with that.
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01-15-2013, 06:08 PM   #7
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Thanks Susan, im seeing my Consultant tomorrow for scan results so will mention it to him, much appreciate x
01-15-2013, 08:41 PM   #8
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I agree with Susan 100%. If you have restless leg syndrome and Crohn's, supplement magnesium. The serum magnesium test is pretty useless so don't rely on that, try supplementing under your doctors guidance and see what happens.
01-16-2013, 03:28 AM   #9
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Thanks for your reply David, i appreciate it. I am seeing my Consultant today for results from MRI scan for ? Crohn's sowill discuss it then, will let you know
Regards
Mandie
01-17-2013, 08:57 AM   #10
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I don't think it's related to Crohn's. I get it, but only after general anaesthetics - apparantly they can cause Restless Leg Syndrome, as can some medications (some anti-histamines and anti-depressants can, I believe), and deficiencies, as had already been mentioned.

At my last surgery I asked the anaethetist if there was any way to prevent or treat it, and she basically said no. :P That's not strictly true - searching online I found there are some medications used to treat RLS, but since I only get it so very occasionally and predictably I didn't bother trying any out.

When I had the most major of my operations the restless leg thing just went insane on a couple of nights though - I couldn't sleep, was in pain and feeling awful from the surgery, and I literally kept getting out of bed and lying back down again, over and over, all night long. The people sharing a ward with me must have loved me lol!
01-17-2013, 09:17 AM   #11
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I don't have crohns (son does) but I do have RLS. It can be horribly annoying! It can be a sign of iron deficiency - it has been bothering a fair bit lately and my HGB and ferritin levels are very low right now.

I've allso found that the more tired I am whan I go to bed, the worse the RLS acts up.
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01-17-2013, 09:20 AM   #12
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I wasn't aware of the iron connection Tess, very interesting. Do you by chance have a paper/study that discusses that? I'd love to read more.
01-17-2013, 02:26 PM   #13
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I don't have RLS, but I do have Essential Tremor. I was diagnosed with that before I was diagnosed with Crohns. ET is the most common of the movement disorders. Actually, It was my neurologist who first caught on to me not absorbing vitamins, nutrients, (and meds), like I should.

After she got my tremors under control she went on the search of correcting my deficient vitamin levels. Vit D3, B6,B12,Folic Acid, etc.. During this time I had a very bad flare and ended up in the ER. At this ER trip I was given a CT scan and ER doctor, to whom I am eternally grateful, told me I have Crohns. I got in to my new G.I. and he ran numerous tests, (all the scopes, etc...) and confirmed the diagnosis.

When I told my neuro my IBS diagnosis had been changed to Crohn's, I remember she spent most of that appointment telling me how sorry she was. I also remember this statement. "Well, I think we know what caused the malabsorbtion that caused your tremors." If ET can be a result of Crohn's, I don't know why RLS can't.
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01-17-2013, 06:32 PM   #14
Tesscorm
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David, I don't have any papers on it but my GP has told me a number of times that it's related to my low iron levels and when googling RLS to try to find some ideas to relieve the RLS, I've come across the connection of RLS and iron levels on most of the sites.



Found a couple of articles:

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001810/

http://www.mayoclinic.com/health/res...SECTION=causes

http://www.webmd.com/brain/restless-...s-syndrome-rls


Last edited by Tesscorm; 01-17-2013 at 07:30 PM.
09-10-2014, 12:56 PM   #15
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just ran across this- restless legs can be alieviated with tonic water with quinine- however, quinine can cause severe allergic reactions in some people- but it is rare- the FDA took quinine off the market because of the risk, however, to avoid enraging gin and tonic drinkers for which there are millions, they allowed tonic water to still contain it- there isn't much in tonic water, but enough to alieviate both restless leg syndrome and leg cramps BUT please do your own research into it and make up your own mind about whether to use it or not- even a small amount can affect a person negatively IF they are allergic to it- but it is very rare-

A much safer alternative is magnesium (and calcium and potassium) as magnesium is critical for the correct functioning of muscles- restless leg is an improper reaction in the muscles- magnesium can help ease those symptoms
09-10-2014, 01:48 PM   #16
nogutsnoglory
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I don't think there is a connection aside from magnesium deficiency which most people have but likely worse for us. I have RLS as part of fibromyalgia but since I am using magnesium oil and doing magnesium foot soaks it seems better.
09-10-2014, 04:41 PM   #17
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I started to get it with the onset of Crohn's and it persisted into remission. But I recently started taking Magnesium as advised by folks on here for migraine/aura and it seems to have helped with the jumpy legs too :-)
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09-10-2014, 07:08 PM   #18
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RLS cross relates with a lot of chronic issues actually, betting the poster notices it most when trying to go to sleep.
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09-10-2014, 07:37 PM   #19
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Perhaps the reason that magnesium supplementation is particularly effective for those with Crohn's and other intestinal disorders is that it is highly soluble in water and so lost through diarrhoea. I know from personal experience that, if I stop taking magnesium supplements, my restless legs return.
09-10-2014, 07:48 PM   #20
nogutsnoglory
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Susan do you find though that the magnesium increases your diarrhea? I can't seem to take it without running.
09-10-2014, 08:25 PM   #21
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No, I don't. I wonder if it has to do with the type of magnesium, how and how much you are taking...

The literature does give softening of the stools and diarrhoea as possible side effects, especially of overdosing with magnesium. The upper limit for adults seems to be about 350-400 mg/day for adults - BUT that includes the magnesium that you get from food such as leafy green vegetables, nuts, beans, etc.

Using the oil externally on your skin and as foot baths would make it very difficult to measure how much magnesium is actually getting absorbed. It seems to be a very efficient way of absorbing it and perhaps you getting a bit too much. You could try cutting back for a while and seeing whether that has any effect.
09-10-2014, 08:27 PM   #22
nogutsnoglory
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I do think the magnesium transdermally shouldn't be an issue though because it's bypassing the GI tract and whatever is absorbing is going into the blood stream.
09-10-2014, 10:10 PM   #23
Susan2
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This website is promoting the benefits of Magnesium Oil, but also deals with the side effects:

Abdominal Cramp and Diarrhea
Another relatively common side effect of external use of magnesium oil is loose stools.

In the more severe cases, this can lead to acute diarrhea and even abdominal cramping.

This is a definite sign that you are absorbing too much magnesium and you should cut back on the amount you use if this happens.

Moreover, you should probably discontinue use for a few days until your system gets back to normal.
09-10-2014, 10:46 PM   #24
nogutsnoglory
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Wow, that's crazy. I mean who knows? There aren't many studies on TD supplements. The site may be right though I have no clue. I guess trial and error?
09-10-2014, 10:51 PM   #25
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I have an ileostomy, so I'm quite loose anyways, however, when I tried transdermal mag- it didn't seem to cause D but if I take mag in pill form it does- I usually take a 1/2 pill of it and don't seem to suffer too much D-

Edit: Just found this study, showing restless leg syndrome is around 40% of people with crohn's if I'm reading it right-

http://www.gidoctor.net/client_files...-RLS-10-08.pdf

Last edited by nazareth; 09-10-2014 at 11:36 PM.
09-11-2014, 01:38 AM   #26
Susan2
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Wow, that's crazy. I mean who knows? There aren't many studies on TD supplements. The site may be right though I have no clue. I guess trial and error?
There are some other websites mentioning the effects of supplementing with too much Magnesium but I think that one is particularly relevant because its main purpose is to promote the benefits of using Magnesium Oil - they are unlikely to mention negative side effects unless they needed to.

I agree that trial and error seems to be the only way of finding where your particular tolerance levels are.
09-11-2014, 01:58 AM   #27
Susan2
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I have an ileostomy, so I'm quite loose anyways, however, when I tried transdermal mag- it didn't seem to cause D but if I take mag in pill form it does- I usually take a 1/2 pill of it and don't seem to suffer too much D-

Edit: Just found this study, showing restless leg syndrome is around 40% of people with crohn's if I'm reading it right-

http://www.gidoctor.net/client_files...-RLS-10-08.pdf
This study looks at whether Crohn’s disease was associated with RLS since both are associated with iron deficiency. It would be interesting if they did the same sort of study on the correlation between magnesium deficiency and RLS in Crohn's Disease sufferers.
09-11-2014, 09:22 AM   #28
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Susan do you find though that the magnesium increases your diarrhea? I can't seem to take it without running.
What form of magnesium are you taking?
09-11-2014, 09:35 AM   #29
nogutsnoglory
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Magnesium sulfate and magnesium chloride applied transdermally through foot soaks and magnesium oil on the skin. I don't take any internally.
09-11-2014, 09:52 AM   #30
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I see. Interesting. Do the transdermal forms make a claim as to how much you're getting?

Do you notice anything different while on them? As in, you think they're working?
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