Full body RLS

[Alyson66]

I am really quite jealous of people who so far have managed to stay off the opioid route because to the best of my knowledge there is nowhere to go after that 😢

[Katerina22]

Have you tried pregabalin?It takes time to work.Plus tramadol works better.

[Alyson66 in reply to Katerina22]

Tried everything before the opioids,had the argumentation, you name it I've had it over the years x

[Katerina22 in reply to Alyson66]

Sorry to hear this...

[Coraliej in reply to Katerina22]

I have rls due to withdrawing from Tramadol. It’s a horrible drug! There are other choices from the doctor related to meds for Parkinson’s treatment etc.

[OnAQuest in reply to Coraliej]

You actually have RLS that was triggered from Tramadol withdrawal?! Was the Tramadol for pain? My friend has full body RLS and takes 3 doses of Tramadol starting at 2p (he also has psoriatic arthritis that is very painful and made worse by RLS) and then the time released oxycontin so he can sleep. I'm trying to figure this all out and everyone has a slightly different experience. Its so hard to see him suffer I'm determined to find some answer to this!

[Joolsg]

I hear you Alyson. However, there are interesting anecdotal reports about Low Dose Naltrexone. Flowergirl used a micro dose of LDN to reduce her opioids without suffering withdrawal symptoms. Once off opioids, she then increased her dose of LDN to around 3.5mg and she is RLS free.

Who knows, it may work and it is something to hold onto in case the opioids stop working.

Involuntary Dancer is using Dipryadimole with some success so that would be another possibility.

However, don't worry yet as a lot of people use opioids long term and they still work.

jools

[Alyson66 in reply to Joolsg]

Thank you for your reply, could you please tell me what Naltrexone is ? Because I must admit that is one I've not had and also LDN ? Felt a flutter of hope there because as you know the side effects of the opioids are nasty and my life has become a slave to them.tia xx

[Joolsg in reply to Alyson66]

Hi Alison

Low Dose Naltrexone is a drug used to help people with addiction.

It is used off label for other diseases like Multiple Sclerosis & Crohn’s disease with a lot of success.

Some people with RLS have discovered it also helps their RLS.

Flower girl posted about 3 months ago that she was on opioids and pregabalin and used micro doses of LDN to get off both OxyContin and pregabalin.

She managed to do it without the withdrawal symptoms.

She then increased LDN to 3.5 mg a day and it stopped her RLS completely.

It gave me hope that I could try LDN if and when my OxyContin and pregabalin doses stop working.

I’m seeing my MS neurologist in July and I’ll talk it through with her. I don’t think my GP would go along with itBUT you can get LDN on private prescription in UK and there’s a doctor in Scotland who will help.

I don’t have all the links to hand but I’ll look them up and send them over.

Take care

Jools

[Joolsg in reply to Alyson66]

LDN is Low Dose Naltrexone

X

[lorrinet in reply to Alyson66]

I've been on opiates for many years. The only side -effect I've had is constipation, but with a healthy diet with of lots of fruit and veg, and a daily bar of liquorice, I'm fine.

[Madlegs1 in reply to lorrinet]

I agree completely- I'm on low dose oxycontin and have no side effects at all. Just complete freedom from rls. Except on the occasions when I either deliberately or unknowingly take triggers. But even then a small dose of Paracetamol clears it up almost immediately.

[involuntarydancer]

Hi Alyson,

I know you have very severe rls which requires a lot of opioids and I really feel for you. Try not to despair. It is worth bearing in mind that rls can also respond well to a combination of drugs. So maybe a lower dose of opioids together with pregabalin might help you. If you have been off the dopamine agonists for a while you could consider adding back in a very low dose of pramipexole (obviously this doesn't work for everyone but there is a relatively good outcome for returning users if they take a very low dose, exercise great care not to increase it and build in breaks from it so that receptors are reset).

Have you had your serum ferritin checked? I'm sure you know but it should be over 100 and if it is lower you should consider finding someone who would give you an iv iron infusion.

You are comparatively young so it is worth trying lots of options. Rls is a journey - as you know.

Dietary changes have been remarkably effective even for people with relatively severe rls. Have a look at Raffs' recent posts.

You could look at my posts about dipyridamole.

Ldn has helped some people as Jules says. LotteM and I are both trying it though the consensus is that we may have to wait up to six months before we know if it affords relief.

Kratom might help you to reduce your opioid dose (I appreciate it is not legal everywhere but it can be ordered by post and no one is any the wiser - desperate measures for desperate times). You could then look at adding some of the other drugs in as you reduce the opioids. I am repeating myself but it is worth considering a cocktail of drugs. It seems to sort of fool the rls - it doesn't know where to turn to get past the drugs!

It can all seem very hopeless, especially when one perceive's that one is coming to the end of the drug treatment road, but in fact there are always other possibilities.

[Alyson66 in reply to involuntarydancer]

Hi hun, have tried the prami again but seems less effective now even after being off it for over 12 months,I don't know and am guessing but maybe now my body expects and replies on opioids to deal with it, don't get me wrong,the fentenayl is still effective against RLS in fact best thing I've ever had for it but it's the side effects and dependancy that is ruining me...tbh I don't know what Kratom is either,is it available in the UK ? Like I said in previous post,thank you for these suggestions and my little bit of hope,felt I was doomed to a life of opioids xxx

[Dougg in reply to Alyson66]

Hi Alyson66.

Kratom is a naturally occurring plant which for some people provides huge relief from RLS symptoms. I had been taking 25 milligrams of Oxycodone daily for a couple of years, and I also wondered if I might have to be on it for the rest of my life. I started taking kratom and was able to drop the Oxy 100% all at once with no discernible withdrawal symptoms. The kratom did a much better job at alleviating my RLS symptoms than the Oxycodone. It was virtually miraculous for me, and it gave me back some real quality of life. It’s also my understanding that withdrawing from kratom is much easier than withdrawing from opiates.

Wishing you much success on your journey.

— Doug

[Alyson66 in reply to Dougg]

Thanks,I just need to find out the UK equivalent,also thank you for the hope,it's a massive thing for me xxx

[Parminter in reply to Dougg]

Which Kratom did you use Dougg? Red Borneo? And during the day? There are so many varieties, like cannabis, and unravelling it all can be daunting. MInd you, there is nothing about RLS that is NOT daunting. So much experimentation, so much expense, so much hope, so much blighted hope........

[Dougg in reply to Parminter]

Hi Parminter.

I so hear you about the unraveling and experimintation needed. I suspect that’s because RLS is possibly a symptom of something else amiss, and the “something else” may differ for each person affected, and we also all seem to react differently to different substances (hence the wide variety on this site of things that work for various people). With regard to kratom, I started with one called Red Dragon Bali, based on a recommendation from this forum. That worked very well for me. It’s a slow strain. I then started experimenting with other slow strains so I could trade off between them to avoid or delay development of any tolerance. Some worked better than others for me, and I was able to find four or five others that had about the same effect as Red Bali. I do take it during the day as well as at night, and it’s massively improved my quality of life. I hope this information is helpful. Glad to answer any other questions. Wishing you speedy relief.

— Doug

[Parminter in reply to Dougg]

Well Dougg, I think that no-one has a very clear idea of what is happening. It seems, latterly, that in fact a lot of things are happening in our brains. Dopamine, iron, glutamate, adenosine............

Western Medicine is highly atomistic and is trained to break things down into discrete pieces and look at them as though they did not belong to a whole. A result of the whole of Western thought, paternalistic and mechanistic - and thus disinclined to believe the testimony of patients who complain if conditions that cannot be easily nailed to the wall. A pill for every ill is so last century! But things are changing, I hope.

Thank you sincerely for the information on Kratom. May I ask what dose, both at night and during the day?

[Dougg in reply to Parminter]

Parminter -

I agree completely. In fact, I’ve wondered if we’ve accidentally done ourselves a disservice by naming this Restless Leg Syndrome, because the “Syndrome” part may subtly imply that it’s a condition for which there is a single cure. I tend to think of it more like having a stomach ache. The stomach ache is a result of some other issue, and there could be lots of causes.

To that end, I have high hopes for what is now being called “Functional Medicine”, which takes a much more holistic view of the body as an entire system, rather than the discrete mechanistic view you mentioned above (which still seems to prevail in much of western medicine). Interestingly, it’s my understanding that Chinese Medicine has always had this more holistic view of the body and health.

With regard to Kratom, it’s like everything else in that dosages vary by individual. Based on some helpful information on the internet, I started out with one teaspoon (which I take with hot water like matcha green tea; I add stevia and sometimes coconut creamer to cover the taste, which is a bit on the bitter side), and then I waited an hour to see what happened. I then upped that amount a little at a time, until I reached a point where my symptoms were adequately covered. For me, that ended up being about two rounded teaspoons, and the effects for me last about three to five hours. At that point, I can feel it starting to wear off, and I take some more. I do that throughout the day, and then I tend to take just a bit more right before bed, and that usually allows me a full night’s sleep. Like most things related to restless legs, it’s a bit of a trial and error process.

All the best to you,

— Doug

[Parminter in reply to Dougg]

Thank you Doug. I shall attempt more than one level teaspoon. No harm, no augmentation.

I think the name Restless Legs Syndrome does an extreme disservice in that it implies something very - ummm - blehhh, so what, we all get it, take some magnesium and hot milk and stop whining.

I believe it is not even mentioned in many medical schools. I once watched a very eminent medical professor in my area laugh his head off at the idea that it was any more than neurosis. Teehee. May he rot in hell.

[involuntarydancer in reply to Parminter]

May he have some nights of bad rls - you mean

[Tabs1212 in reply to Alyson66]

Can I just say... I stopped taking opioids 2 years ago and my rls was so severe that I was desperate to try anything else... that's when I found kratom. Though it completely relieves my rls, it is highly addictive and super expensive. I had to take a drug test for work and I failed for methadone! The problem with that is, kratom was the only thing I was taking!! So beware of kratom because I can't seem to quit, and it isn't regulated. There is methadone in kratom! I know rls is horrible, but i wouldn't try kratom if I were you. It is no different than being addicted to hydrocodone

[Alyson66 in reply to involuntarydancer]

Sorry,also have done the pregabalin with the opioids and no it didn't work xxx

[Parminter in reply to involuntarydancer]

Dancer. how does the dipyridamole help? Is it because of the vessel dilation? If so, what is happening - is it in the brain? And does the anti-clot part thin the blood? If the latter, then one would need to be aware of other blood thinning agents if food and pharma. Yes? no? I assume it is off-label, and you have smart physician.

[involuntarydancer in reply to Parminter]

It is off-label and there are some risks to taking a blood thinner. My GP pretty much accedes to my every request regarding rls (he is an old friend also). Dipyridamole was used in a radical (but small) study into its effects on rls and found to be helpful. I mentioned it to my GP and he gave me a script for it (he loves dipyridamole). It took me a while to decide to take it it I am finding it helpful. It doesn’t work for me as a mono therapy but it has allowed me to reduce other meds. Have a look at my posts (search ‘dipyridamole’). They will refer you to the study (very technical) from which you can discover the physiology.

[Parminter in reply to involuntarydancer]

Ah well, if it is a blood thinner I cannot take it. Even baby aspirin gives me nosebleeds. One to strike off my personal list! But thank you for the careful reply.

[jimmcar in reply to involuntarydancer]

This answer embodies the heart of this forum - compassion, empathy and very knowledgeable.

[involuntarydancer in reply to jimmcar]

Thank you so much. You’ve made my day.

[involuntarydancer]

Just to let you know, it is possible to move beyond a mono-therapy of opioids: I needed the maximum dose of oxycontin for my rls for a while - I can't remember how long I took it for - it wasn't years by any means but it was long enough for me to be completely dependent on oxycontin and to experience withdrawal symptoms by about 11am every day as the effect of my evening dose wore off. It wasn't easy coming off the oxycontin but I did manage it. If I had to do it again now I would definitely use kratom to help - I hadn't worked out how to order it when I came off oxycontin unfortunately.

[Alyson66 in reply to involuntarydancer]

If I can figure out a strategy with the medications suggested and also my GP would it be possible to pick your brain when the time comes (if) as you have also been through the hideous withdrawal ? I want nothing more than to come off them but I don't want to be back in the equally hideous place with full body RLS....The post about that poor lady really hit a nerve with me as I'm sure it did with quite a few others..it in a way felt for me like permission and that is sad and terrifying xxx

[involuntarydancer in reply to Alyson66]

Delighted to have my brains picked - what’s left of them with all the medication!

[Parminter in reply to involuntarydancer]

You must have had a lot to start with, more than most, so no worries there!

[Yakester]

It is such a crazy dance we do with our RLS drugs. I’ve had it for many many years...before doctors diagnosed it. Mirapex was the first rx I used. It worked for quite a while but the side effects caught up with me. I had sudden onset of extreme sleepiness while driving. Crossed the road into a ditch and couldn’t be seen from the road. In the hospital they abruptly took me off mirapax and started me on a gaba... after being on that for a few months I got so depressed and anxious that I couldn’t even go grocery shopping. So was prescribed antidepressant and anti anxiety. Those drugs messed me up so much that I ended up leaving a 36 year marriage. There were, of course, underlying problems but I lost the ability to cope. In the last few years I have worked out a system where I take prami in the middle to late afternoon and if I have breakthrough symptoms I take hydrocodone. I have managed to make this work until recently when I have more breakthrough symptoms and wake up in the wee hours of the morning with pain. I guess what I’m trying to say is that it takes some experimenting. Side effects can be life changing.

[Memmy]

Dont despair there is always something new to try

[Kayakcarole]

I was suffering from augmentation after 10 years on Pramipexole. I am thrilled with my results after almost 2 months on Low Dose Naltrexone! I take one mid to late afternoon and another about an hour before bed. In am currently in Spain on a two week vacation and have even been able to have one glass of red wine every evening with dinner without going crazy from the increase in rls that I had before beginning LDN. If I get some rls sensations before bed or in bed, I lightly massage my leg in a figure 8 pattern which sounds like absurd voodoo but it really works. An energy healer suggested that for any area of discomfort. I now see a path forward for living again. Good luck to all. 💕

[Parminter in reply to Kayakcarole]

Kayak Carole, great name, how did you accomplish the DA wean?

[Kayakcarole in reply to Parminter]

My Functional Medicine PA did not have me build up on KDN but instead said to just start taking two pills a day which equal 4.5 mg total. I cut my Pramipexole dose in half for the first few weeks then just stopped it altogether. It took a few more weeks before my rls symptoms abated. I am so thrilled with my results and hope more sufferers find the help I have.

[Alyson66 in reply to Kayakcarole]

What is KDN chick ? X

[Kayakcarole in reply to Alyson66]

Oops! Autocorrect strikes again. LDN is what I meant to say.

[lbrosa]

Hi Alyson66...I am taking LDN for nearly two months. My Neurologist started me at 1.5mg and he said he felt I would need the recommended dose for LDN which is 4.5mg. I have now worked up from 1.5mg to 4.5mg and LDN is ALL I take with only occasional flares of mild RLS! My RLS had been SEVERE and I had been on DA's (first Ropinirole (Requip) and then Pramipexole (Mirapex) and I used Gabapentin and Tramadol to wean off from one to the other! It was not so bad coming down from Ropinirole 3mg (I had taken it for about 4 years and had been in augmentation for about 3 of those years). Crazy me I did not do any research about meds and my GP then put me on Pramipexole which is also a DA and I augmented on it almost immediately and getting off it was rough for a couple of weeks and I used Gabapentin and Tramadol again to wean down and then started the LDN while I was still withdrawing from the Pramipexole. I believe the LDN helped me get rid of the withdrawal from the Pram and then I started slowly increasing the LDN...I have been very pleased with it! I also tried Kratom but did not find that it helped me because possibly I was not taking a large enough dose, but it is nasty tasting and causes constipation...so I stuck with the LDN. Please research LDN...if you have MS it could possibly help with it also. My Neurologist had not used LDN for RLS patients before but said he did prescribe it for his MS and Fibro patients so he was willing to let me try it for RLS. Read about LDN here at ldnresearchtrust.org/ and on Facebook by searching Low-Dose Naltrexone. In the US it is not approved by FDA at the low dose but is approved at the 50-100mg dose for addiction so my insurance will not pay for it at the low dose. I have to order it from a special compounding pharmacy and it costs $53 for about 3 months supply. Good Luck

[Hidden in reply to lbrosa]

That link to the ldn research trust has led me to seeing that there's a conference about it at Glasgow university in July 2018. I live a 1 hour train ride from Glasgow and there are non medical tickets available at £100. I might just consider going, expensive as it is. If I do I'll pass on any relevant information I discover.

[Coraliej]

I have rls as part of withdrawing, gradually even, from Tramadol. A good one to stay away from. There are other choices

[Matrix]

Hi I have been on opioids for thirty years plus and I’m just reducing now by myself . They work to a point . I also gave full body RLSits not fun when it happens it feels so bad I want to pull my limbs off , all that I can do is walk and keep walking until it stops and sometimes I have it for days , I’m exhausted by the finish of it then a little break and off we go again. Take care 🦋🤗😇

[martino]

I take 2700mg of Gabapentin, have a 2mg Neupro patch and take 200mg of Tramulief. My neurologist wants me to stop the Tramulief as she thinks the Neupro is controlling the RLS. I accept that at the present time the RLS which has been severe is in a quiet phase. Her plan is to reduce the Tramulief by 25 mg a week with an increase of Gabapentin by increments so that when the Tramulief is gone the Gabapentin may be at 3600 mg. I am not convinced but said I would give it a try. I will post again when I am into this but have my doubts

[LotteM in reply to martino]

Martino, I am appalled by the amounts of the meds that you take. Of each class of RLS meds, you take one at doses at, or close to, the advised maximum - when this type of med is taken on its own. Usually, a combination of (types of) meds should involve taking those meds at (much) lower doses.

Why don’t you discuss with your neurologist to reduce the tramulief without changing the other doses? If that doesn’t work, personally I would rather try the same approach with first the neupro and then gabapentin as well. And if you have succeeded in reducing and/or eliminating one med, go for the second one. But, take it very slowly and take your time. Reducing each of these meds may initially lead to withdrawal, thus increased RLS symptoms, before the RLS settles - if it does. I hope you can!

[martino in reply to LotteM]

Things are a bit complicated. On my journey to finding out the cause of my leg pain and movement, and treatments along the way, RLS was identified early. A nerve conduction test should have been had earlier but when I finally had this it was established that additionally I had Small Fibre Neuropathy. Apart from painkillers little can be done and the Gabapentin, initially prescribed for the RLS, was continued in part for this. Now, I suspect because the neurologist is fearful about opioid, I am in the odd situation of the Gabapentin being increased to support the Tramulief reduction. This was initially given for pain but I found it suppressed the urge to move my legs. I agree I am on a lot of meds. I have tried to stop the Tramulief before but I probably approached this too abruptly-I just stopped. I will do the 25mg steady reduction downwards and see what happens!

[involuntarydancer in reply to martino]

LotteM speaks good sense here - it seems to me.

[involuntarydancer]

Wow! Two successful ldn posts. I think it might be worth starting a separate thread.