Crocheting helps

[booras]

Hello, I have had occasional RLS even as a teenager. As I have gotten older, it has worsened and now I cannot sleep without medication and the RLS will act up on long plane rides and typically if I try to nap in the late afternoon. These are the things I have found make it worse:

alcohol, benzodiazapines, THC, melatonin, being overtired

And, these are the things I have found that make it better:

ropinirole (I am currently at 1-2mg daily)

Gabapentin (I have just started taking 300mg nightly)

Strangely, if I am feeling it come on and I begin crocheting, the problem goes away. This would not help insomnia, however if on a long plane ride and I don't have my medication or if I have taken the meds too late and am waiting for them to kick in, I can crochet and then I don't have it at all. This does not solve the insomnia issue, because as soon as I stop, I wouldn't be able to sleep without the meds. It is interesting however, that crocheting can have any benefit at all.

I have tried iron replacement but not given it a long enough try, I have not tried acupuncture (not affordable) nor have I tried electrolytes or the Therapulse. I will try the electrolytes next and I will add iron for a longer duration before I give up on it.

[SueJohnson]

Crocheting works because it is a distraction. Before continuing with the iron you should have your ferritin checked. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45%. When you get your results, if your ferritin is not over 100, post them here and we can give you advice.

[Clarence1936]

dI don't remember That drug.

[Doodles-61]

Hello yes I am on Ropinirole I take 1mg every night, the only relief I can get is when I am on my feet as soon as I sit or relax or go to bed off it all starts I also knit and crochet and do cross stitch because that helps to distract your mind however I can’t stay awake as soon as I start to read or do crafts I start to fall asleep and the off start the legs !!it’s most distressing and I have suffered now for a number of years I find stress definitely makes the condition come on too and occasionally it comes in my arms, I am also anaemic I was on iron tablets but it didn’t seem to make any difference I also have other health conditions I have severe osteoarthritis I have just had a total knee replacement 5 weeks ago I was hoping perhaps that might reduce my symptoms but sadly it did not. I have multiple prolapse discs Lumber and Cervical with compression with sciatica down both legs this definitely makes RLS worse I have also just had my 4th caudal guided epidural in my lumber area it helps for around 5 months i have also had my right foot operated on and am due for my left foot to be done I am only 5 weeks post op from my knee replacement, I have multi joint osteoarthritis which has spiralled over the past 3 years I find the whole situation dismal , I have 6 grandchildren so I have to keep with it if I had no one who would miss me I would have opted out by now because as soon as I try to sleep/rest-or relax off it all starts and it robs you of any quality of life and taking the tablets my consultant keeps trying to put me on Gabapentin nerve tablets which carry a substantial weight gain I have just got my weight to a stable situation I need to lose around a stone and I would then be happy with my weight, when you go to see the consultant after they have put you on all these drugs that Ballon your weight up then they say to you that need to lose weight as it would help grrr…. !! It’s an ever diminishing circle of misery with very little support and of course your sleep pattern is disturbed every night with RLS and it then gives you massive anxiety and depression, I have only been on the Ropinirole for a year , yes it works but the side effects of taking this drug clearly warns that it may increase the RLS symptoms and also once again you have to reduce the drug very gradually to reduce the withdrawal effects if you want to come off from it , it’s a minefield out there and you end up searching for the magic cure when it seems in fact that there is a lack of knowledge or understanding about this awful illness, you try to research it all desperately looking for just that glimmer of hope😢 here in the UK we have a shortage of Gp’s long waiting lists to see consultants only for them to add addictive drugs that carry worse side affects and off it all starts again until you end up having to go to a drug rehabilitation unit to slowly reduce the prescription drugs, if you can try to join a gym yoga , swimming, just small amounts it definitely helps both physically and mentally , I know this is probably grim reading but it is what is is !!and at least you can get some support from other sufferers , meditation helps listen to natures sounds rain, thunder birds singing etc the trouble is when you are in so much pain with multiple problems it’s hard to find that motivation and the best support is talking to people who know how it is because they suffer too, I hope this is of some help all I can end with is that you are a warrior and keep fighting back I hope your situation improves for you sending everyone a hug , a hug goes a long way x

[TheQuarryman]

You are right in your listing of things that aggravate RLS. Add Caffeine to the list. For very many years I have had severe RLS and have relied on Ropinirole as the most effective remedy. I use 4 mg/day, importantly the 24 hour slow release. This has prevented augmentation. Insommnia can be a problem but the occasional use of Diphenhydramine can help.