I've had this for about 20 years, but it's got worse (and in my arms too) since I've been on hrt. I've tried a load of meds*, but so far the only thing that helps (sometimes) is mollasses. It's driving me nuts, messes with my already messed-up sleep (I have CPTSD, and Asperger's, and idiopathic neuropathy).
*gabapentin, pregabalin, ropinirole, quinine...
Hi womandrogyne,
How long have you been on Ropinirole? The fact you mention ii's got worse and is now affecting your arms makes me think it's augmentation from the ropinirole. Enter Augmentation in the search box above and have a look at the posts.
jools
I was only on it for two weeks, acpupps of months ago. It didn't help, and it caused terrible reflux. I'm not currently taking anything medical.
Aah, sorry I assumed the list of meds was a list of meds you are currently taking. Have you asked your GP for blood tests to check your serum ferritin level? If it's low, that can cause severe RLS. Just a thought.
Jools
They did test that recently before prescribing the ropinirole.
Hey. I also have it in my arms, back and hips - affecting my legs.
I'm on Neupro patches 2mg patch once a day. I've found it really helpful.
But I've now moved to nz where I can't get these patches. Disaster.
So I'm looking at other avenues.
Have you ever wondered if it's actually trapped nerves. There are nerve centres around the arms and hips apparently.
I've been involved in work which adds extra weight bearing in these areas.
I'm going down the route of sports massage at the moment. To loosen off these areas. And also looking at my food triggers. I think the food and the biomechanics play a massive part that may of been overlooked.
But in the interim. I can recommend the Neupro!
" it contains significant amounts of vitamin B6 and minerals, including calcium, magnesium, iron, and manganese; one tablespoon provides up to 20% of the recommended daily value of each of those nutrients". BLACKSTRAP Molasses taken form Wikipedia
You may be picking up some Iron that could be helping. Might I suggest Gentle Iron taken on an empty stomach in the evening for a week or two to see if that improves anything.
Have you ever tried an opioid for the RLS - they can be very effective. Targinact is licensed in the UK for RLS.
Good luck.
My iron is fine, I'm assuming it's some other mineral balance that the mollasses sometimes helps with. I've tried coincidentally the opiates tramadol and tapentadol, basically nothing reliably stops the rls.
Your blood Ferritin levels may be fine but people with RLS have difficulty storing Iron in their brain, (which is needed to utilise the dopamine). Thus you get 'normal' results but low levels.
Use the search function on here and look up iron, or gentle Iron and you'll find out a bit more.
Ha - Black Strap Molasses - that was the clue that helped me - IT'S IRON! Low normal level for me at 49 - read all about it. Iron Bisglycinate Chelate worked almost immediatly. hopkinsmedicine.org/neurolo...
My iron is fine.
There is information on the fact that excess estrogen can cause RLS to be worse. Dr. John R. Lee (What Your Doctor May Not Tell You About Menopause) and other doctors of the alternative type use bio-identical progesterone to counter the estrogen dominance that causes trouble with many body systems. If you are on HRT then there is probably estrogen in it and that is causing you RLS to be worse. Some other people on here have noticed that when they ran out of their HRT prescriptions their RLS got better. Read up on Estrogen Dominance and RLS. Also xenoestrogens -the chemical ones in our environment, plastics, foods, etc. that add to the estrogen dominance.
Maybe the molasses helps because (at least blackstrap molasses) has iron in it. Iron bisglycinate 25 mg. has been very helpful to a lot of us on this website. Take it at night. There is a lot of info on this website on iron bisglyscinate and the need for iron for RLS sufferers. Also Magnesium is very important for the effect it has on soothing the nerves of RLS. But not just any magnesium. Magnesium citrate or magnesium malate are good sources that do not cause such severe diarrhea as magnesium oxide. Look these up also. (Iron and Magnesium.)
I do not take any drugs for my RLS, so other people on here can give you that information.
I get my estradiol levels checked regularly, they're actually always on the low side.
Restless head syndrome 
Newcomer - Restless legs AND arms !
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