UPDATE. Nothing good.

[Micafe]

I've lost hope!. This is the most horrible thing that has ever happened to me and I've gone through a lot of bad things, including cancer. There have been a few 'remedies' that have helped for a while but then the monster comes back with a vengeance. The last couple of days have been unbearable. I have been crying a lot. I am desperate. I really don't know what to do anymore.

[Joolsg]

Oh I really feel for you. It’s horrible. How is the reduction of Lexapro going? Has your GP offered any assistance? You really need to be helped through this withdrawal and you need your GP to help you get off Ropinirole as well. Remind me what dose of Ropinirole you’re taking. I found that reducing from 4mg to 2mg gave me temporary respite for a couple of months before augmentation kicked off again.

[Micafe in reply to Joolsg]

Hi Joolsg. Thank you so much for your reply. I'm doing fine with the Lexapro reduction. I'm doing it very slowly. My doctor is about to give birth but I've been following her instructions. I haven't started getting off Ropinirole yet. I'm taking 0.75MG.

Take care. 😊

[Joolsg in reply to Micafe]

Ok that’s not too high a dose so hopefully when you start to reduce it will not be too problematic. You may even find that the RLS settles once off lexapro and you can stay on the Ropinirole for longer.

Make sure you keep taking ferrous bisglycinate every other night as it can help some people during ‘augmentation’ episodes.

Also try all the ‘alternative’ remedies like compression socks, really hot baths, deep massage of the legs with menthol cream- anything to distract yourself.

You will get through this even though it doesn’t feel like it now.

Wishing you strength.

[Micafe in reply to Joolsg]

Thank you so very much! It's good to have someone that listens. For some reason I haven't been able to wear the compression socks I have. I'm a slim woman and I've bought both large and extralarge and I can't manage to put them on! They are too tight! 😩😖

[Jules1953]

Hello Micafe, so sorry to read how desperate you are due to your RLS. We the community here know exactly how you feel. And we care about how you are suffering. I have had RLS for 49 years and only those of us with this condition truly understand the torment and suffering we experience.

Some of the medications the medical professionals have put us on have actually made things worse. So little is known about RLS but fortunately there is great advice on this site.

We all need to be well informed about RLS and medications and their impact before going to see our Doctor and Neurologist. Because so often they get it wrong.

I have been slowly reducing my Pramipexole intake over the last 1.5 years. From 3.00mg to now 0.125mg.

The augmentation was horrendous, I was so exhausted and distraught and my life was unbearable.

I used Endone (oxycodone) 5mg to help me reduce when I got down to 0.75mg Pramipexole.

Three weeks ago I stopped taking Endone and changed to Buprenorphine sublingual tablets.

These come in 200mcg that is (0.2)mg and I take 1 , sometimes 2 of these each night. I am still taking 0.125mg of Pramipexole but the goal is to remove this from my system completely.

The Buprenorphine is allowing me to sleep through the night, symptom free.

My Doctor applied for me to be able to use this controlled medicine to treat my RLS because all other known RLS medications no longer worked and I was not sleeping at all.

Approval was given.

I live in Western Australia.

I wish you all the best, kind regards Julie

[Micafe in reply to Jules1953]

Hi Julie. I understand what you are saying. This is a real nightmare. I cry a lot, I feel just miserable. Many times I feel I want to die and I'm scared one day I'll be so desperate that I'll do something stupid 🥺. I have a wonderful husband and he's extremely worried. Thank you for your kind words.😉

[involuntarydancer in reply to Micafe]

There are very few people on here who have not entertained these morbid thoughts. RLS makes life unbearable when it is out of control. There is now scientific support for the link between RLS and suicide - a study about a year ago found a significant increase in suicide rates amongst RLS sufferers - it nearly triples.

In your shoes, I would print a copy of the study (it is referred to here: webmd.com/brain/restless-le... and bring it (email it if appointments are occurring remotely at present) to your GP. Explain to her (or her replacement if her maternity leave has commenced) that you feel utterly hopeless and need some higher level of support - I would push for tramadol or buprenorphine. I would bring the supportive husband to the appointment for backup - it might help to allay her fears that you are/will turn into an addict. Most GPs will step up to the mark when faced with the danger of a suicide risk. Opioids sound like a big step but many on here have used them merely as a stepping stone to a different regime rather than as a long term treatment.

[Micafe in reply to involuntarydancer]

Thank you sooo much for you nice reply.

RLS is just an addition to all the other health problems that I have. It seems like everything just fell on me at the same time.

It started with cancer that led to chemotherapy which caused a number of health problems that won't go away. None fatal, I don't think.

One thing leads to another, so now I'm taking a lot of medications and my stomach has developed a painful gastritis that has gotten worse in recent weeks. I had an appointment with the gastroenterologist but it was canceled due to the pandemic. I have plans to make the appointment again.

Best wishes.

[Dougg]

Micafe - I’m so sorry you’re going through such agony. Please know that we’re thinking of you. The people on this forum know how hard this condition can be. If you are in any position to get your doctor to prescribe an opiate for you, that could help for at least the short-term if not longer. Although it doesn’t seem to be widely known in the broad medical community, low-dose opiate therapy for RLS is supported by doctors at Johns Hopkins and others, and has been used successfully for decades. I don’t know if you’re in a place where you can get pure kratom, but if so, that would also be worth considering as a way to mitigate the discomfort.

Wishing you speedy relief.

Doug

[Micafe in reply to Dougg]

Hi Doug. Thank you so much for your reply. I doubt I could get kratom where I live. Also, doctors here are very reluctant to prescribe any opiate. I know my doctor will not do it. I'll keep trying other things. This is so hard. Thank for your good wishes. Micafe.

[Dougg in reply to Micafe]

I'm so sorry, Micafe. It's beyond sad that the substances needed to deal with this awful condition are not universally available to all who need them. If you have the time and the inclination, it may be worth trying new doctors to see if you can find one who is knowledgable about, and empathetic with, RLS. Some of the experienced contributors to this forum have suggested taking copies of certain RLS articles - the kind that are peer-reviewed by people who doctors respect - as a way of encouraging doctors to be more open-minded about prescribing opiates. The Johns Hopkins Center for Restless Legs Syndrome (hopkinsmedicine.org/neurolo... is one resource.

My best wishes for speedy relief.

Doug

[Sampsie]

I am wishing so much that you get relief soon as you are really suffering. I've never taken DAs so I'll leave that to the experts on here, but could you switch to an opiate? Can you get an appointment before your doctor goes on maternity?

Failing that, is cannabis available to you? Or as Dougg says, Kratom?

Sending hope your way.

[Micafe in reply to Sampsie]

Hello Sampie. I am trying to get in touch with my doctor, I really don't know how close she is to having the baby. I am sure she will not prescribe an opiate for me. Doctors here are extremely reluctant to do it. It's not that I'm going to start abusing it, but they don't want to take the risk.

[wildlegs]

I know everyone acts differently to different drugs but if you have not tried Tramadol I would suggest you try it. I’ve had RLS for 25+ years and for the last 10 years I’ve been taking it with great success. I used to put on ten miles walking every night before I could get to sleep (and sometimes that didn’t work either). I started with 50mg and for the last three years I’ve been taking 200mg. It works for me! I take 100mg at five pm and another 100mg at eight pm. It’s a slow acting medication so I find that by 10 or 11pm I can go to bed and fall asleep all night. That sounds simple enough but you would know how great that is. Again I’m not a doctor but I know what works for me. Good luck from a fellow sufferer.

[Micafe in reply to wildlegs]

Hi wildlegs. No, I have not tried Tramadol. I understand it's an opioid something my Dr. is very reluctant to prescribe those meds. Thank you so much for your reply.

[involuntarydancer]

It's worth bearing in mind that if you can't get your GP to prescribe tramadol or another opioid, there is some codeine (also an opioid) in solpadeine which can be purchased over the counter. This can help to alleviate symptoms (obviously be careful of your intake given that solpadeine also contains paracetemol which can be injurious).

Kratom is helpful for many sufferers but it is not legal in some jurisdictions. Many online vendors in the Netherlands and the US will ship it abroad in 'stealth' packaging (ie plain packaging with the product labelled as a dye - which it can also double as so don't spill it on your clothes). Cannabis does help some sufferers but it seems to be less consistently reliable and more idiosyncratic than kratom judging by the posts on here and other forums.

I hope you find some relief. This condition can be a torture and undermine your will to live but many many people on here have found a new lease of life through educating themselves and their medical physicians and accessing different treatment regimes. Don't give up hope.

[Micafe in reply to involuntarydancer]

Thank you so much, involuntarydancer (at least you still have a sense of humor and I congratulate you for that ).

I'm trying not to lose hope but sometimes it's not easy. Best wishes. Micafe

[58anniem]

Sending a big community hug.....I get so much comfort from just knowing I can reach out to this amazingly helpful and understanding family on here. It really helped me when I found out that there are others that experience the same weird and unbearable pains and discomforts.....it made me realise that I wasn’t the only person walking in this blizzard of fear and uncertainty.

You’re not alone and we all feel for you and support you and care about how you’re feeling.

Take care of yourself and find your strength with the fantastic advice on here xxx

[Micafe in reply to 58anniem]

Hi 58anniem. When I found out 2 years ago that I suffered from RLS I had no idea it existed. I had never heard about it. Now I'm aware there are so many people out there suffering from this horrible disease.

I ask myself, if this condition has existed for so long, how come no one has found a cure for it? They don't even know what the cause is. Strange, to say the least.

Thank you so much for the very nice words. I wish I could help others here. I have tried when I've thought I had something positive to say. It's so sad .

[feetgrind]

I'm so sorry for your agony Micafe and unfortunately have nothing to offer but sympathy. I refused to take the DA's my Neurologist prescribed and his next choice seems to aggravate my IBS, so I share your feeling of hopelessness. RLS is so cruel.

[Micafe]

Hi feetgrind. Sympathy is enough for me... That's what we all need. Thank you sooo much! Best wishes.