Issues relating to disorders which are related to, or which may occur as a consequence of HMS. Including but not limited to: Ehlers-Danlos Syndrome, Marfans, Osteogenesis Imperfecta, Sticklers Syndrome, arthritis, depression, chronic fatigue syndrome. To include everyday problems such as IBS, eyes, teeth, etc.....
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by loosebones » Thu Feb 28, 2008 4:53 pm
Is it possible to have restless legs in your sleep? I'm going through bedsheets with my leg wiggling at night.
"Just when I got my head together, my body fell apart".
"I think I have a problem with my joints..."
The heaviest thing I can carry is a grudge.
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by Hayley » Fri Feb 29, 2008 11:09 pm
LB, I used to wake my husband up all through the night because I'd be kicking out at him, so yes it does happen during sleep!! Hope you can manage to get some help for it soon, it's really uncomfortable and annoying isn't it?
Hayley

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Hayley
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by loosebones » Fri Feb 29, 2008 11:13 pm
VERY annoying and getting expensive - wish just one gp would listen so I could get some sleep and not have to get mum to make my bed every evening. I had to make it myself this eve and have put shoulder out even more - tis getting beyond ridiculous.
"Just when I got my head together, my body fell apart".
"I think I have a problem with my joints..."
The heaviest thing I can carry is a grudge.
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loosebones
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by sarahh » Sat Mar 01, 2008 11:48 am
Hi Just wanted to add I too get restless legs and it drives me mad, I was prescribed Gabapentin to help which it does but I also take Ginko Biloba and have taken Horse chesnut aswell to help with it and it does work.
Loosebones it might be worth trying these or speaking to the health food shop people like Holland and Barrett.
Sarah x
Hms December 99, Dormant Lupus Sept 07, Back Pain, Raynauds, RLS, Fibromyalgia June 08, EDs Aug 08, Marfanoid features Aug 08, Dyspraxia age 5
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by loosebones » Sat Mar 01, 2008 7:28 pm
good idea - the gabapentin hasn't helped the restless legs so will look down the natural route
"Just when I got my head together, my body fell apart".
"I think I have a problem with my joints..."
The heaviest thing I can carry is a grudge.
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loosebones
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by lil_miffy » Wed Mar 26, 2008 10:53 pm
i was diagnosed with restless legs as a child. its not so much of a problem now as im on long term sleeping tablets for a different condition. but when i do experience it it is the most frustrating thing and often brings me to tears.
i also get the same sensation in my arms which is even more stressfull and disturbing. i find this usually happens when i drink alcohol but can happen randomly. i dont drink now thankfully.
i get so annoyed and desperate i end up jumping out of bed an shaking my arms and legs sometimes so vigoursly that the joint pop out.
i get milder forms of restless legs when im sitting or traveling.
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by cnc03 » Mon May 12, 2008 10:13 pm
I'm a bit late coming to this thread, but I've had some reasonable success using Baclofen for RLS, as well as lifting the end of the bed slightly, the Baclofen is more effective for me, and seems to calm my legs down a lot- I have problems with spasms/ spasticity so that may explain why it works quite well for me, but I have been led to believe that it is used for RLS in the general population as well.
I tried quinine tablets but noticed no different. I saw and checked my Iron levels when the GP did them and they were fine as well as they suspected this may have been the problem, but apparently not.
I've never tried Magnesium as I'm scared to add supplements to the random mix of medication I'm already on.
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by Rosie » Mon May 12, 2008 10:30 pm
Hi cnc03
Your pharmacist will be able to tell you if it is safe to take a supplement like magnesium with your medication. They are very good at things like this and if they don't know they will look it up.
Rosie
Diagnosed HEDS December 1st 2005. DD1 (20) HEDS and scoliosis (now corrected by surgery), diagnosed June 2006. DD2 (18) mild HMS. Son (11) some hypermobile joints, poor muscle strength and seems to be developing scoliosis as well, woopee!
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by Eloise » Mon May 12, 2008 10:44 pm
There is some evidence that magnesium works for RLS, but as Rosie says it is best to check with your pharmacist if you are on medication.
Magnesium can cause a problem if mixing with some medications in the stomach stopping them getting absorped into the blood stream, so even if the doctor/pharmacist says they don't have a interaction in the way they work - they may still suggest taking them at a different time to other medication so they don't mix in the stomach.
I sometimes get restless legs, and find I need to do an appropraite amount of stretching and relaxation of my muscles before bed, as well as doing some exercise during the day. I also have to make sure I keep hydrated. However, when I try and sleep upright, such as on a plane or train or bus, my legs go overboard and keep me awake forever (travelling for over 24 hours - I got less than 30 minutes sleep)
Benign Joint Familial Hypermobility Syndrome (BJFHS) - Confirmed Prof Bird April 2008

I am a Pharmacist and I will give my opinion on these boards. However, always ask your own health professionals for your individual circumstance.
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by Zoe* » Thu May 15, 2008 11:54 am
ooo came across this and thought that i could ask a question. I dont have any thoughts about shaking of your hands but i was wondering if anyone had any idea's or had experienced really shakey legs.
Its a bit like ive done lots of excerecise and my muscles are spasming but it lasts ages. It happens quite frequently and doesnt matter if i am standing or sitting. Its not painful but more embarassing. I cant seem to stop it once it starts and sometimes it gets so bad my whole body shakes. It really freaks people out.
Not meaning to thread hyjack
Zoe
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by kerry-lou » Sun Aug 10, 2008 11:04 pm
not sure where this would go guys! Mods- move as needed (sorry)
my husband and i both suffer restless legs mine through pain his not sure but we stumbled upon this article the other day
http://www.peoplespharmacy.com/archives/home_remedies/soap_under_the_sheets_for_rls_leg_cramps.phpwe figured it would do no harm so tried it.
IT WORKED !!!!
no restless legs for over a week
thought it would be interesting to see if it works for any one else.
i know it sounds mad but i may just work
kez
xx
May your light within shine bright no matter how dark the cloudsearch me out on facebook
Kerry Louise Aston
just let me know who you are in message

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by barkingmad » Mon Aug 11, 2008 12:09 am
That does sound bizarre! But it must be worth ago..am going to try it tonight.
But why would it work? And how on earth did someone come up with that?
Eloise any ideas?
Donna
barkingmad (Donna)
HMSA SENIOR MEDICAL LIAISON OFFICER/ ADMINISTRATOR
Retired RMN, HEDS, Fibro,
3 children,
eldest son, HEDS, dyspraxia, IBS, ADHD, ASD
middle son, HEDS,
youngest daughter HEDS, dyslexia
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by Blaadyblah » Mon Aug 11, 2008 12:32 am
*wanders off to find a bar of soap...*
Will report back in the morning!
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by Finarda » Mon Aug 11, 2008 2:38 am
I had terrible RLS for a few years when I was having kids, then they discovered that although I wasn't anaemic my iron stores were incredibly low. Once I started taking iron, my iron levels only slightly rose (the iron tablets made my stomach bleed!) but the higher my iron levels rose, the better my RLS got. I eventually found natural sourced liquid iron that got my levels up although they weren't near normal until after I stopped breastfeeding my last child. So I'm also a believer in iron deficiency causing RLS.
Mind you, my husband still complains about my legs fidgeting in bed but that's only because I'm a fidgeter anyway, it's not as annoying for
me as RLS was.
Fiona
Diagnosed EDS - Hypermobility 2004. Severe Hemiplegic Migraines. Both kids show hypermobility but haven't been tested.
A Scot living in Canada
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by kerry-lou » Tue Aug 12, 2008 7:32 pm
any results on the soap guys??
mines working a treat, just the pain keeping me up now!
kerry-lou
xx
May your light within shine bright no matter how dark the cloudsearch me out on facebook
Kerry Louise Aston
just let me know who you are in message

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