Pregabalin doesn't seem to work any more and I'm desperate to get a bit of my life back, not to mention some sleep.

[feetgrind]

I have been taking 300mg of Pregabalin nightly for about 4 years for RLS secondary to Peripheral Neuropathy of many years standing. My RLS has worsened considerably over the past few weeks and I am in tears and still up at 4 or 5am most nights. As well as this depression I seem to be compulsively eating all day long. My question is whether I could have developed side effects from the Pregabalin after taking it for this long. I understand that Gabapentin would be a backward step and my (Australian) Neurologist won't prescribe anything else other than DA's, which I won't take. I would appreciate some advice from the helpful people on this forum on what else I can beg him for which I might have a reasonable chance of some success with. Bearing in mind that I am not independently mobile to have the luxury of shopping around.

[Hidden]

Firstly, the fact that your RLS has worsened over the last few weeks, suggests that something has happened recently that has triggered your RLS.

It's natural enough when RLS gets worse to think about what could make it better, rather than think about what could be making it worse and if possible, eliminate it.

I wonder then if anything else happened just before your symptoms got worse.

For example have you also recently started.on any new medication?

You mention depression. If you're taking an antidepressant, it will most likely be the trigger.

It's also possible your iron levels have dropped recently. Anaemia can make RLS worse, but even if you have no anaemia you may have an iron deficiency. I suggest a blood test for serum iron, transferrin and ferritin.

If your serum iron and transferrin are low you may have iron deficiency anaemia, if not but ferritin is less than 75 you may benefit from taking an oral iron supplement.

I'm sorry if it turns out that the pregabalin is failing and I can fully appreciate you not wanting a DA.

The next option is, as you may know, is an opioid. Low dose buprenorpine is becoming a popular option.

You would have to persuade somebody to prescrive it

I suggest you contact a forum member who has had some success with buprenorpine in Australia.

You can follow the link below to her profile page and send her a private message and I believe she can offer advice.

healthunlocked.com/user/Shu...

[feetgrind in reply to Hidden]

Thanks Manerva for reply - prompt and helpful as always. You are on the money when you suggest that something has probably triggered this worsening of symptoms. My 81 year old husband is currently in hospital having just had his second hip replacement in 3 months. He has a heart condition and lost quite a lot of blood but he is OK. I can't visit him due to lack of transport not to mention the amount of walking involved in getting around hospitals. I am also battling IBS and a chronic ulcer on my foot for which I've had to take antibiotics. So I have to break into this vicious cycle of stress, actually take the iron supplement I bought, and I will contact Shumbah to gather some ammunition to take with me to my next Neurologist appointment on June 15. I believe he did actually read the study on augmentation recommended by you after I saw him last time so that's a start. Apologies for the length of this screed but, as we all know, it does help to vent!

[Hidden in reply to feetgrind]

Sorry to hear about your husband and hope he recovers and gets home soon. This must be very stressful, so not surprising your RLS has flared up.

[DicCarlson]

Not a cure-all - but certainly something to consider for your ulcer and to promote sleep. I just ordered an Earthing Mat. ncbi.nlm.nih.gov/pmc/articl...

[Guitarpickin in reply to DicCarlson]

Have you already put the mat to use? I’m very curious to hear what you think. Despite the research article, the idea of trying to connect to the earth while in your home via a cord/post/conduit sounds like a gimmick. It’s hard to imagine how it would work, despite the article’s explanation. But it’s interesting because I have noticed my symptoms are significantly improved or nonexistent every time I go camping. I have back and neck problems (to which my neurologist attributes my myriad neurological issues, including RLS, and recommends surgery) but still prefer sleeping on the ground (with a mat) over a tent or making a bed in the truck. We camped almost every weekend during the first year of COVID and this relief from symptoms held true the entire time. I don’t know why I feel like a million bucks when camping but maybe it’ll pay off to try harder to get outside/touch the earth, even when stuck in a city. It certainly can’t hurt! I hope the Earthing Mat does what it’s supposed to do and in turn helps you feel better!

[DicCarlson in reply to Guitarpickin]

I haven't received it yet - but I'll give a fair report. Yes, the camping improved sleep I thought was lack of light, but I think the earthing might be the more prominent effect. I'll let you know!

[Guitarpickin in reply to DicCarlson]

Hi DicCarlson! How are you? How is your Earthing Mat? I hope it is helping you!

[DicCarlson in reply to Guitarpickin]

Not really a game changer at all! I use the sleeping pad and the foot pad when I'm at my desk. I had intermittent use 'till July (only 2-3 nights a week). So, I'll give it another month full time and see what happens.

[Guitarpickin in reply to DicCarlson]

Dang. Sorry it’s been a slow start. Hopefully with more consistency you might notice a change for the better. Thanks so much for responding. I’m rooting for you!

[WideBody in reply to DicCarlson]

Wow, interesting paper for sure. Where did you order your Mat? How do you intend to use it? I am looking at all things inflammation related. I seem to be a couple years behind you, I am currently doing the Taurine, L-theanine route with some success. But with RLS everything works for a couple weeks.

[DicCarlson in reply to WideBody]

I bought it from Earthing - I got the starter package. earthing.com/

[Hidden in reply to DicCarlson]

That certainly is a very interesting article. Although it doesn't give enough detail to make it entirely convincing, it does make sense.

I shall investigate further.

Please let us know how you get on with your math

[Hidden]

I’m sorry this has happened to you. It happened to me too some years ago after a few years when Pregabalin was effective. I think it will become more & more apparent that Pregabalin too causes augmentation the more folk take it.I too have peripheral neuropathy. I’m speculating that Pregabalin works particularly well at first in this situation.

It takes some weeks or longer to come off Pregabalin I’m afraid & I found the lowest doses were the hardest.

I am certain you are right not to take a DA.

I’m afraid I haven’t found a decent answer since.

Obviously I would try to keep ferritin levels up ( am still working on this ), double check you are not on any other tabs which can make it worse - some are commonly uses, there is a list on this site, and see if you can identify personal food triggers - many suggestions on this site too.

We sadly have a horrible condition with no easy answers.

[Amrob]

I have been on pregabalin for about 7 years now and it is still effective in controlling my limb movement. Interestingly I developed some mild chronic fatigue type symptoms over the past 3 years.

I asked my general physician if it possible to develop side effects from medication that I'd been on for several years and his reply was "most definitely".

I find iron infusions help a little.

In addition to buprenorphine there are other opiods such as Targin that can be prescribed in Australia.

Also, I know of some people having relief with medical cannabis (CBD oil with THC). Although this is expensive, it may be prescribed on compassionate grounds, meaning you'll pay very little if at all.

It really is a case of finding a good specialist who is open to trying different things.

Which state are you in? You can send me a private message ).

[Jeverleybane]

Pregabalin did not touch my restless leg symptoms. I am now on Neupro 2mg/24 hr patches which are fabulous and have solved all my problems. I can’t recommend them highly enough.

[RLSEXP]

HiI live in Australia and found it quite easy to get a prescription for Temgesic subliminal 200mcg tablet. (both my GP and Specialist were very willing to help me). I take one each night around 8pm. It has totally changed my life. I still get opioid alertness at bedtime and often have to get up for a bit. About 5 nights a week I take a little Zanax (Alprazolam) 0.25 - 05mg to calm my body and then I sleep!!! No more RLS in the day and very rarely at night. I had problems when I started - nausea and heart palpitations (still do some nights) but it has settled down considerably. Of course, not everyone will have these side effects.

After stopping the Ropinirole(Repreve)I tried just about all the other drugs including Targin, Lyrica, Gabapentin, Tramadol, Codeine .....If your specialist is reluctant to provide a script, perhaps you should try another doctor. As Manerva suggested, you might like to get in touch with Shumbah. She has helped a lot of sufferers, including myself.