Living with Restless Legs

I have been living with restless legs since the age of 14. It began after having flu. Over the years it was mild only happening about four or five times a year - not pleasant, but livable with. Five years ago it got much worse and now I have it all the time, in both my legs and arms. I take pramipexole and have rotigotine patches which I alternate. If I don't get the dosage right on any one day then I pay the price! I am writing this at 1am! I have tried every alternative medicine and home remedy to no avail: no caffine; alcohol only at lunch; vitamine B; iron; magnessium spray; epsom salts baths; lavendor oil; alternate hot and cold water; legs elevated; flight stockings; warm socks; exercise - nothing works. I was taking antidepressants and HRT. I stopped taking both in the hope that it would help. I get very little sleep and therefore feel tired and depressed most of the time. It would be lovely just to have a normal life again. Is there anything else that I can try?

[Pippins2]

Hi welcome.When you say you alternate how does that work?Do you mean you takr the Prami fot a few weeks then change to Neupro ot you take them on alternate nights? What is the daily dosage? Have you had to up the dosage over time? Does RLS run in yout familu? Has your ferratin iron been checked? Sorry for all the questiond but need a bit more to go on.How long have you been on the meds? Did they work at first? You could be experiencimg problem from the meds themselves known as augmentation.It may be that you need to change yout meds from dopamine to painkiller.Painkillers help with the urge to move not just pain

Anyway will leave it there until i get yout teply and its turned 4am so i am off to sleep now!...Pipps x

[Hidden in reply to Pippins2]

I usually take the prami for a few days and then have a patch for a few days. I try not to take too high a dose so usually end up having to take more as the evening progresses! Sometimes I will put on a 1mg patch (have had patches up to 5mg) and then if needed take a prami later in the evening if needed. The severity of my RL is cyclicle - it is always pretty bad, but sometimes, much worse and I then have to up the medication. I try not to take too much medication, hence experimentation with dosage. Been on meds for about five years. They have always worked, but have had to up the dosage as the years progressed. Have tried painkillers which do not work at all. Have tried strong sleeping pills which when my RL is really bad do not work. Hope all this makes sense. Thanks so much for responding - it is really appreciated.

[Pippins2]

Also take a look at some other posts amd replies x

[frances1]

Hi know how you feel took slow release tramadol last night for the first time slept 6 hours not slept that long in years will keep you posted early days, RSL can ruin your life hugs

[Hidden in reply to frances1]

I will be really interested to hear how you get on - yes RSL can ruin your life - thanks so much for responding.

[frances1 in reply to Hidden]

Hi took 100mg of tramadol made me feel ill it took 36 hours to get out of system .I tried zopiclone last night did not make me sleep still felt pains in my legs. Going to try the ropiniirole 0.25 three times aday hope this woks really cheesed off not has much sleep x

[Altair]

Hi. This story is very familiar. Lots of us have a similar experience - including me. Distraction is good. I have just finished the ironing and listening to the BBC World Service that thankfully runs through the night.

One comfort is that you will find lots of support here.

No one thing seems to help, and improvements can be very subtle. I THINK I have seen an improvement by cutting down on sugar as well as the things you mention.

All the best.

[Hidden in reply to Altair]

Thanks so much for responding. On the whole, I don't think the medical profession take RSL seriously - it can really ruin your life. I have been known to watch a whole episode of Midsomer Murders standing up in the middle of the night, not to mention long walks at 3am. it is a very lonely place to be in the middle of the night. Hope cutting down sugar continues to improve things for you. All good wishes.

[johannasuar]

It seems you've tried many things, but there are more. I'll only mention my experience since I'm not as knowledgeable as others here but at least it will be a contribution to try and help. I take TRAMADOL , I've been on it for close to six years. I get no side effects, the augmentation record is the best and you have room to increase without any problems. Of course like many meds, it works for some and not for others, I think I'm a lucky one because it's my miracle pill. My dose is one 50 mg pill at 5:30 pm and another at 11:30pm. The trick, as you know and have experienced is to be ahead of an attack, that's why I have my schedule and I use my alarm clock on my phone so I don't forget or screw up the timing . I did start the TRAMADOL with only one pill at night but then I started to feel the THING in my arms as well, that's when I increased my dosage. If you haven't tried TRAMADOL ask your doctor for a script and give it a try. There are a few people here that also love TRAMADOL, as well as those that it didn't do a thing for them. Good luck and keep us posted..

[Hidden in reply to johannasuar]

Thanks so much for your response. Am going to my doctor today, so will mention tramadol to him. So glad you have found something that works for you. With all good wishes.

[beady3]

LIKE you I have tryed the lot but don't give up I also take Tramodol and can tell you it's the best I have taken,I take 2 tabs and find that's enough,I do get a bit of skin itching but not enough to worry about, go for it you will not get augmentation with those x

[Hidden in reply to beady3]

Thanks so much for your response. So glad you have found something that works. Am going to the doctor today so will mention tramadol. All good wishes.

[Rontgen]

TRIGGER WARNING

It runs in my family too. It gets so bad and drives me so mad that I want to cut my legs up to get relief. I used to take temazapam but now on 6 clonazepam a day and getting used to that dose now. I take a lot of meds to calm me down but I have a high tolerance level and it takes a lot to have a proper affect on me. Different meds work for different people and need upping and changing as you get used to them and they stop working for you. Good luck <3

[Hidden in reply to Rontgen]

Thanks somuch for your response. A couple of people have recommended tramadol - so am going to mention this to my GP today. All good wishes.

[Hidden]

Dear All

Many thanks for all the responses to my post. It is good to know that I am not alone - but sad that so many people suffer. Am going to visit the GP again tomorrow!

[SuperMNew]

You sound like me, HMM-R! I've been searching 40 years for some answers, only to continue to grow worse and worse. I have tried everything you listed and experienced NO results, just like you! My doctor was killed in a freak accident and I had to get another one, and this one may have nailed the problem! He said that I needed to have my leg veins checked. I did. The Vein Clinic did an ultrasound of my legs and showed me veins where the blood was NOT recirculating sufficiently back to the heart CLEANED UP. The bottom line: my legs were retaining "dirty blood" which causes the leg tremors and jerking so typical of restless legs. I am in the process of getting approval from Medicare (they will pay for this treatment), and then I will start the process of the doctor closing off the stretched out veins that cannot sufficiently clean and return the cleaned blood to the heart. I'm no medical person, but I can understand this. The doctor in the Vein Clinic said that they cure "80 Percent" of patients with Restless Legs. At last there is hope on the horizon for me! I encourage you to look into this. It could be a permanent answer, which is what we all look for--not just continuing to "cover up the problem" with medicine that eventually does not work. God bless! Report back any progress you come across.

[Hidden in reply to SuperMNew]

Do hope this works for you. Would be grateful if you would keep me posted. Many thanks.

[SuperMNew in reply to Hidden]

This does not promise to be a quick "fix." But I can see it as healing permanently a problem I've struggled with 40 years. Restless legs is not the way I was born, nor was it part of my early years. So, I know there is a problem that needs to be fixed. My appointments are set and I will start treatments next week. There are 14 (one per week) in all with interim ultrasounds of my legs to see which veins still need to be "shut down." The blood then re-routes through healthier, smaller veins that can do the job of cleaning the blood. (This, the doctor tells me, is the problem. Dirty blood.) This treatment is covered 80% by my insurance (Medicare) with the remainder by me. For me it is worth it if the problem is permanently fixed. I really freak out at the thought of living the rest of my life on drugs that eventually will not help at all but only make my problem worse.

[Hidden in reply to SuperMNew]

Many thanks for your response. This sounds really interesting. Am going to my doctor today so will certainly mention this. do hope it goes well for you. Wouldn't it be wonderful to have a permanent answer! RLS really is no fun.

With all good wishies.

[Pennyfarthing in reply to SuperMNew]

hi I do hope that this works for you. I had it done also but unfortunately it’s made no difference to my RLS. It has made my legs feel lighter which was and is a benefit. Good luck

[Milescircus]

Oh I just saw your post.. how are you now????? I have almost the exact same story. I don’t know if you’ll reply since it’s been so long ago but I am 45, I have had horrible RLS since the age of 14 however I don’t recall that specifically anything came before or brought it on. I saw my first dr for it though as an adult, as a nurse actually at maybe age, 24? I don’t know how I lived until then as it only got worse and worse. I started on low doses of mirapex, dosed by a neurologist, and eventually ended up on mirapex and gabapentin and Tylenol #3, just to sleep, eventually Ambien, that was discontinued quickly!!! Then Lunesta was tried a few years later too... cooking in the middle of the night and burning my hand or changing aquarium water and not recalling it until I saw the 5 gallon buckets the next morning and seeing that I had painted my nails in the middle of the night got those discontinued!!! 😳😳anyhow... I now take mirapex 0.5, (1.0), gabapentin 300 (1200), trazadone 25 (75-100), neupro patch 3 mg every 24 hours or every other day if I can make it stay on as they’re so expensive even with insurance... mostly I’m better but lately my legs have been a wreck! I have found out through a series of different medical events that I have autoimmune atrophic metablastic gastritis which means I can’t absorb b12 or iron either really so if what I understand about RLS is that it’s a brain iron deficiency than couldn’t being deficient be causing worse RLS symptoms? Have you had all your labs checked? Iron, TIBC, b12, folate? RLS is a miserable existence. I would love to hear how you are doing now!

[BE2oza4]

When I was in hospital; a few months ago having a knee replacement the nurse mentioned that her husband took Rapinorole for restless legs. Maybe?