RLS nightmare
Posted , 18 users are following.
Hello all, I have had RLS for a few years now and it drives me mad. My gp won't do anything even though feeling sorry for me! Just lately it has got worse and is now in the arms too! Any advice would be grateful
5 likes, 28 replies
RobertT Flangies
Posted
Your case is rather interesting though since your profile says you have haemochromostosis. I have a 94 year old anaemic mother who needs transfusions to treat it and I'm sure we'd be glad to here there's iron rich blood in the blood banks, but it's interesting in regard to RLS since RLS is associated with a particular lack of iron in processing dopamine. I wonder if there isn't some sort of reverse effect when there's too much iron in the blood. For a long time I have taken an iron supplement not least in respect of the amount of exercise I take and my suffering with RLS. Recently I read that older people can store up too much iron in the brain and that that excess iron can cause oxidation damage to the brain. I now seldom take an iron supplement. How does this all hang together, I wonder.
petejb RobertT
Posted
Lilac_S Flangies
Posted
RobertT Lilac_S
Posted
A number of antidepressants make RLS worse (Mirtazapine possibly the most). What one really wants to know is why a dopamine agonist won't help or a painkiller if necessary.
[...glad to hear ... (sorry)]
Flangies RobertT
Posted
I didn't take your response badly and appreciate your advice and Suzy's advice too. I do suffer with hemochromostis and don't really know enough about RLS so wasn't aware that it can be caused due to low iron! How strange is that knowing I have high iron overload. I have been advised to get referee to a specialist. I have private medical insurance through my partner work.
So I will hopefully get some help. I can go 2weeks with no restless legs then bang it back with a big bang. It has got worse over the years too and is now in the arms
Flangies Lilac_S
Posted
I was given amitriptlyn a year ago as I had shoulder pain following extensive surgery I was also given gabepatene too. I no longer take these.
Didn't know they could help with rls x
RobertT Flangies
Posted
I believe you can buy an extract from black velvet beans online or even OTC quite legally in this country. It contains L-DOPA, a precursor to the neurotransmitter dopamine, but I understand this has even greater augmentation problems.
nikki74962 Lilac_S
Posted
coral81968 Flangies
Posted
Regards coral
RobertT coral81968
Posted
Flangies RobertT
Posted
Thanks for your advice
JWH Flangies
Posted
I certainly understand what you're going through. I got RLS about 8 years ago and the medication I was prescribed stopped working, and in fact, was making my RLS worse (called "augmentation"). I was losing sleep and losing my mind.
Fortunately my sister found a RLS specialist at Johns Hopkins, where she works - Dr Christopher Earley. He may be the top RLS research doctor in the country, and he started me on low dosage Methadone (15mg) for my RLS. It's been an absolute miracle for me! It quieted my legs down right away, and the dosage hasn't needed to be increased any. Another sister has also had great success with Methadone. Get your doctor to prescribe 10-15mg Methadone, as it works for 85% of RLS patients.
Good bless you and good luck!
J.W. Hornsby
JWH Flangies
Posted
Flangies JWH
Posted
Must add this condition is surely debilitating.
Even when I fall asleep through exhaustion I still wake up jerking my legs and arms. On a really bad night is a nightmare, other nights it is not so bad and a walk up and down the stairs or go and sit downstairs for an hour.
I wonder if exercise daily may help. Like walking or light jogging
coral81968 Flangies
Posted