New Member, old RLS

[Neil46]

RLS for 30 years, have taken various tablets prescribed by my doctor which used to work for a while but now nothing works except to make my condition worse. Treatments prescribed by hospital neurologists have given me tremors or semi-fits so had to cease using these. My RLS affects my calves, thighs, arms and back in various combinations and though starting mostly during the evenings or nights also strikes earlier in the day if I have been exercising (DIY enthusiast). I have got to the point that I hate evening times because I know I will be in for hours of walking the floor doing John Cleese funny walks whilst shadow boxing if my arms are affected that night. Sounds funny but it is not at all funny for me. I am lacking sleep and therefore feel this is beating me. I am not usually a whinger but have taken this opportunity to air my frustration. Sorry guys... Any advice will be gratefully received.

[Jumpey]

Sorry you are struggling so much. We all know how you feel! What drugs have you tried so far? If you post these details someone will be able to help you.x

[Neil46 in reply to Jumpey]

Thank you Jumpey. I started off with mirapexin 0.088 (pramipexole of course) and it helped for about six months. Then it just stopped working and dr put me on ropinirole 2mg. Again it soon stopped working and I was referred to a neurologist at the local hospital. He prescribed Requip XL - a larger, longer lasting daily dose which made me feel dizzy and as if it was too strong for me (I am not a pill-taker, even for headaches so perhaps a small dose acts more strongly for me). My dr then recommended repeating ropinirol, which helped for a couple more months, i have also since been given Gabapentin, Neurontin and Clonazepam, all of which gave me mini-fits and bad nights. I am now back on pramipexole (0.18 once per night) and I get really sleepy but RLS won't let me relax and I pace the floor again finally sleeping at about 5am then I cannot wake properly until maybe 11 am so my sleep hygiene is ruined and day is becoming night. Reading fellow sufferers' comments I think I must come off the dopamine agonists and ask dr for help with withdrawal.

[Jumpey in reply to Neil46]

I am no expert on drugs. But you should google / look at the treatment page of The Southern California RLS Support Group. I would suggest an opiate may help you-it is a recognised treatment for RLS. The world renowned RLS expert Dr. mark Buchfuhrer will respond to you by email via the support group if you would like his advice. He has helped many people on here. good luck.xx

[Pinkston]

I know EXACTLY WHAT YOU MEAN. I HAVE IT IN THE EXACT SAME PLACES AS YOU TOO. I am 40 and have been fighting this since the age of a teenager. It's Like horror movie ever night.. I can hardly sit down... car rides i can't do... either now. I have been given a sample of the Neupro patch. This Monday... and it helped.

[Neil46]

I am sorry to hear you have it too. No cinema, no theatre, no long car rides etc etc. No fun is it? I am trying to get courage up to book a flight to France. Only an hour for me but when I went to Germany (One hour ten minutes) it was torture as the plane was absolutely packed and no room to walk! And again on the way back home, so I am interested in the Neupro patch. Do you have any info?

Neil

[Bluey2017]

Sorry to hear about your symptoms. We did a lot of research into RLS a few years back when I became aware of my husband's symptoms at night time. During the middle of the night his legs would start cramping, so much so that I thought he must have been dreaming of running a marathon, or running away. After investigating, we started with the Epsom salt baths and had some relief. Epsom salts are form of magnesium. By taking magnesium citrate instead my husband has had consistent long term relief from within about 10 days of taking the magnesium last thing at night. He takes 200mg to 400mg every night and has done so for over 3 years. Magnesium also helps with getting a good night sleep. Both of us take it now and it totally lessens any aches and pains one gets on wakening. Hope this is of help to you.

[Neil46 in reply to Bluey2017]

Thank you Bluey, I have actually bought some Magnesium Citrate 100mg because I found not much relief with the Epsom Salt baths (2 cups and a one hour hot bath). I think the heat helps best. After reading some reviews about MCitrate I am concerned that I will be racing frequently to the loo. I decided to wait till my doctors appointment before taking it. I also have some Gentle Iron 20mg, again waiting to discuss with doc. How did you start?

[Bluey2017 in reply to Neil46]

Hi Neil46,

Medics use the frequency of going to the loo as an indicator of the upper limit of a product you can tolerate.

100mg is of magnesium citrate is very low. Our multi vitamin contains 400mg alone. With this knowledge I would start with 2x100mg magnesium last thing at night for a couple of days, just to let your system get used to it.

You may find at this level you get a better night sleep.

Within a few days, increase to 300mg together at night and within a few more days increase to 400mg (4x100mg tablets) at night.

Make sure that the magnesium tablets do not contain any other vitamins or supplements because these can keep you awake half the night!

400mg is the level of our multivitamin so you are now at "normal" levels. You can speed up this process, if you go too quickly your system will tell you with "very loose" movement / like diarrhea. If this happens just cut back 1 tablet that night.

From 400mg you can start feeling relief from rls. Give this level a few days, if no relief just increase by 100mg at a time as before. You are finding your own level of need here. between 400mg and 700mg you should find your sweetspot! Let me know!!

By now you will most likely have better nights sleep, feeling more relaxed and resiliant during the day, less anxiety (if you ever had any), improved bowel movements (if you were ever constipated), free from rls, fewer aches and pains on waking.

My 82 year old mother started her multi vit which contains 133mg magnesium. within 4 days she added her second multi vit to 266mg magnesium, she tolerates a further 2x100mg magnesium. She takes the multi vit in the morning and the magnesium supplement last thing at night. She plays golf twice a week.

See below about magnesium citrate study to relieve rls symptoms. They used 300mg and received some benefit warranting further study.

See also their note about 600mg for migraine relief, so you know that higher doses are tolerable.

livestrong.com/article/5232...

It would be great to hear your progress.

kind wishes

[Neil46 in reply to Bluey2017]

Thank you so much for this advice. I will definitely start with 200mg and increase slowly as you suggest. Could this be the end of prami for me? I hope so. I will certainly feed back results.

Happy Days

Neil

[Bluey2017 in reply to Neil46]

Hi Neil,

Just did some more research this morning.... backed by the US National Health Institute etc all on livestrong.com

short version:

The RDA for magnesium is 410 mg per day for males over 30. (This is well below what is tolerable and needed for specific problems. )

Mag deficiency is found in ALL instances of depression. Which is why the two often go together rls and depression. Also casues insomnia. Migraines. If left untreated it can cause symptoms to worsen over time. Even the worsening symptoms are treatable with magnesium supplementation.

Deficiency can be caused by:

Coffee and alcohol leach magnesium from the system.

Sweating profusely after workouts, stress

In women, heavy menstruation - very common

Hopefully you are on the right track!!

Best wishes

Ann

[Neil46 in reply to Bluey2017]

Thanks for the info again Ann, I am certainly on the right track now. I lose magnesium in 3 out of 4 of the above examples, so I am now more confident in taking the Magnesium Citrate. I will report back