Restless leg

[davegoldtooth12]

Can anyone tell me of a cure I've suffered from 10!yrs of age I'm now 45 I've tried all the dopamine tablets I'm now on 20 mil amatriptaline but they are not helping ) I've had my bloods done got results back to say all is ok and last month I had a scan on my legs and that was all clear it's so doing my head in I want to score heroin but I'm an x addict and I no the out come would be bad

[Hidden]

Hi mate, sorry to hear things are so bad, and with the old addiction, (fair f**ks on getting clean btw) it makes things that much more difficult.

The Amitryptaline could be making things worse - is it for pain, RLS or depression, (if a may ask)? There are alternatives to it that you may avail of.

IRON is a BIG factor. Your Iron levels may come back normal, (they normally do it on a Haemoglobin test), but a more in-depth Iron profile may show different. Even then we can still have low levels as we can't store it properly in our brains.

I take gentle Iron, (easier to metabolise) every evening on an empty stomach, (meant to take something citric to help it too but I rarely do). I've noticed my body has at last reached a good level, (it can effect your stools), and my RLS is as quiet as it has been in a long time. That said I've been taking it a long time so don't give up in the early days.

I had also been taking calcium and magnesium but have stopped as I am not sure how effective they are, it will be interesting to see if things change over the next dew days.

Hot baths/hot showers -so hot you'll want to puke are quite helpful, (although the wanting to puke bit isn't so nice!), it doesn't last for a long period but definitely a help. Sleep when you get a chance. You don't say if you are working if you are can you squeeze in a sleep at diner time? Make up sleep where and when you can.

Yoga/gentle exercise can help not only as a distraction but it has also been shown to help reduce the symptoms of RLS.

Hobbies and interests can help distract too, I am using my sons drum kit as it takes a hell of a lot of concentration using 4 limbs independently and it allows me to flail my limbs about a bit too, (my RLS effects my whole body unfortunately).

There are the Kratom and Cannabis routes you can look into but with the addiction history I would tread very lightly as you know addiction is a hard pit to crawl out of, (again I commend you on that and long may your sobriety flourish). If you search my posts you'll get plenty of info there.

Talk to people, reach out - social isolation, depression and anxiety can go hand and hand with RLS and needs to be addressed too.

Take care

[davegoldtooth12 in reply to Hidden]

Thank you for your reply my maine problem is rls ) and then all the concerquences that it brings , I've been clean complete absternance for 12 years now ) I had the rls back then but I didint no I had it I thought I was rattling of the drugs and drink don't get me wrong I would have been ,but now I no about the rls I can u derstand why I allmyst wanted to cut my legs of ) yet even now clean and dare I say peace of mind when the legs go at night I still wanna chop them of ) I've read lots of research from America and uk and it seems as if the dopamine which I've tried various ones and failed are the first one they give out after that it seems like benzo and the opiats my doctors still have me down as a drug addict and are very cagey with me at present ;I did feel they were judging me but the more research I've done I can see there being cuasious ) are noticing my addiction seems to like the idea of Valium and opioids but not methadone I was on that for 17 years but I'm also aware that some people also get results with them , it's do frustrating at the moment trying different tablets )I'm in the spare room while my wife sleeps in our room (lol maybe it's a wife problem 😎) seriously the amitiptylinev 20 make me a bit sleepy but then the legs kick in and overpower the tablets ) I've tried yogi with some relief and showers and baths but if I sleep then the legs wake me up at 2 or 3 in the morning I'm just not in the mood for contemplation and showers ) I do hope you get through your own difficulties respect from dave

[Frankieanddaisy123 in reply to Hidden]

Wow some great advice thanks

[Frankieanddaisy123 in reply to Hidden]

I have started on some iron tablets to see if they help x

[Hidden in reply to Frankieanddaisy123]

Remember Gentle Iron is best as it is more easily taken up by our bodies. You take it in the evening on an empty stomach and with some orange juice for best results.

I think I have been taking it for a few months now and its only really starting to work.

Don't forget the Yoga help stretch those legs out.

Good luck and let us know how you get on.

Take care.

[Madlegs1]

Agree with all Raffs says.

Just on the bloods and rls- most doctors don't test for serum ferritin- which is the important measure for the rls. And even then they will say you're ok with a level of 50 or so- but you need to be higher - 75 to 100 to be helpful with the rls. It's a complicated business and not to be messed with- you can do yourself in with too much iron taken unnecessarily. Search "iron" on this site to get educated- and you will!😈

Unfortunately the best controls for rls are opiates- which you need to keep clear of. But meds like Gabapentin or Lyrica may be of help.

There is a guy in USA - Dr Mark Buchfurer - who may be better able to help you. You can email him through his website - rlshelp.org - and he will reply for free. A good guy and real knowledgeable . One of the top world experts on this miserable experience.

As Raffs says- the Ami is bad for rls- you need to kick that stuff- there are alternatives- again Dr B can advise.

Good luck in your Quest.

[davegoldtooth12 in reply to Madlegs1]

Thank you will take what you have said on board

[Madlegs1 in reply to davegoldtooth12]

Just wondering- theres a med called Targinact , which is an opiate with suboxone added to take away the hit effect. The doctors might consider that one for your case.

Good luck.

[Hidden in reply to Madlegs1]

You will still get the hit from Targinact orally the nalaxone only makes it inactive if crushed and injected.

12 years clean and suffering RLS, I take my hat off to you. It is such a f**king horrible condition and I use any and every drug I can get to get relief, (although always trying to stop altogether), I salute your dedication to your sobriety.

You mention the dopamine agonists. I was on Mirapexin which although initially great it soon became a nightmare with the side-effects, put me right off them and I swore never again. However I found out about the Neupro patch, (and augmentation - why did my GP not know?) here and have been getting some success with it with no side-effects so might be worth visiting that route again, just in case.

It's a tough one that's for sure but between us all here we're bound to get something that suits. You are up against it with the Dr's as the will be overly cautious with you. Might be worth seeking a referral to a pain clinic see what they can come up with, ( a properly monitored regime can easily be used if an opiate is deemed appropriate and you are willing to use it).

If I can be of any help feel free to PM me, I spent a lot of time working in addictions in a previous life, (although you might have had more than enough of the likes of me ), and am a life long suffer of RLS so have walked that proverbial mile. I am currently looking into Epigenomic manipulation and the use of a God helmet to try and control bad episodes but research is in the early days!!!

Take care.

PS.Thanks to Madlegs1 for including the rlshelp.org site, should of had that in there. Check along the treatment links on the left side of the page for some really good advice

[Pippins2]

Hi,not much to add as Raffs and Madlegs have given brilliant replies . I would reiterate on the Amitriptyline , just 10 mg sends my RLS crazy (and my mother had her first attack in years after taking one pill )

Just a suggestion maybe as you have to steer clear of the opiates it may be ok for you to try one of the anticonvulsant meds eg Gabapentin and Pregablin ( Lyrica )

Good luck

Pipps x

[Frankieanddaisy123]

Have you tried pramapexole? Although I am trying to wean myself off these as have put a lot of weight on I think for you they are worth trying rather than being tempted with heroin x

[DicCarlson]

My Ferritin level was 49 in June (horrible RLS BTW). I eventually settled on once a day of 18mg Albion Ferrous Bisglycinate Chelate. Ferritin level rose to 106 by late Sept. All RLS symptoms GONE except for some insomnia. I discontinued the Iron completely. Retested in early Dec. Ferritin level back down to 74 and some RLS returning. Now doing 3 days week of the Iron Supplement and working on the insomnia. Good Luck!

[Terricotta in reply to DicCarlson]

Go you, DicCarlson! Fantastic results!

There's a lot of good advice in these posts, so won't try to add anything to these. Al I will say is that when I was on ADs, the increase in serotonin was the issue. I have been taking iron over the last year or so since coming off them and all seems ok now (the rls continued even when off the AD). Iron is required for serotonin (as well as for dopamine). It's well worth increasing your levels. ADs mess your brain up. I would recommend some fish oil capsules to help repair any damage and refrain from eating or drinking anything that's a stimulant, like sugar, coffee, etc.

Congratulations on your abstenance, davidgoldtooth12!

[Hidden in reply to DicCarlson]

Mr. Carlson, do you take the iron with a meal? Or in morning on an empty stomach? Or at night on an empty stomach? Thank you.

[DicCarlson in reply to Hidden]

I originally hit on the iron as a RLS solution when I read somewhere to take 2 tsp. of Black Strap Molasees (fairly high in iron) before bed or when waking up with RLS - and it helped somewhat. I then found the Chelated Iron. I take it mid morning 1 hr. after breakfast and 2 hrs before eating again. I take it with Vitamin C (500mg, you can use less). Ferritin blood tests are a helpful guideline. Also you may consider this probiotic Lactobacillius plantarium 299V (LP299V). ncbi.nlm.nih.gov/pubmed/264.... So, you increase absorption and use a chelated iron (crosses the blood brain barrier more readily).

[Hidden in reply to DicCarlson]

Thank you very much. I read very many other comments here about the chelated iron and some take it right before bed. One member claimed it helped his/her insomnia??? by taking it this way. Go figure.

[DicCarlson in reply to Hidden]

Take any iron supplement away from food on an empty stomach and well away from any dairy. Vitamin C increases absorption.