Restless Legs Syndrome
9,630 members5,945 posts

Had enough

Hello, well I’ve posted on here a few times now and got some good advice, but unfortunately for me I’m at the point where enough is enough. I’m the type of person who laughs and jokes about things and doesn’t really tell or show my true emotions or feelings when it comes down to my own well being. It’s a case of, get on with it. But now I’ve had enough, I’ve got a knee injury and been off work for a few weeks, went back on tues but it was too soon and ended up hurting my knee again, so off again. Think I might lose my job at this point. My rls is starting in the morning now and lasting throughout most of the day, I just can’t handle it anymore. I take 300mg pregabalin x2 a day, 1 at tea time and 1 before bed. Can’t take anything stronger as they make me have panic attacks. My drs are a waste of time, they haven’t got any idea what this is like. When I last went.m, I was told it was the end of the rd after this dosage. Don’t know where to go from here, got 1 place in mind, but I’m too much of a coward. HELP 😪

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Please don’t hurt yourself. Suicide is a one-way street with no going back. RLS is the Devil himself and he wants you to give up. But you can’t let him win. I’ve been where you are with wanting to give up, but I am so glad I didn’t.

BTW, who told you it was the end of the road after your current dosage??!! That is the last thing you needed to hear and I’m so sorry they said that.

Please talk to someone right away. What you are feeling is scary (for you in particular) and you shouldn’t need to deal with those feelings alone.

About your job: just remember, a job isn’t everything. And losing one isn’t the end of the world. Is there anyone in your family you can count on getting support from if you do lose your job?

Big empathetic hugs,

Jessica

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Dear Leelee, however awful it is just now please look after yourself and don't do anything to yourself. You will be very missed by all the folk who know you. You have to believe that things will get better and that there will be something more effective found.

However desperate I feel during the night and however tired day time I believe every day that I'll sleep the next night. I really feel for you though and worries about losing your job must be dreadful.

Re the pregabalin, i think it can cause more problems than it solves and what you are taking is a big dose. I also think it causes augmentation. I'm sure it did to me. Coming off it is hard but you may well feel better off it though it has to be done slowly.

Although it is also marketed for anxiety I think it caused me to feel anxious. Especially when there is something to be slightly anxious about it seemed to make me go overboard anxious and I also think it can lower mood. I definitely feel better off it even though I still have horrible RLS. There is a lot about these various drugs that only becomes apparent after some years.

It's awful when Drs don't understand, or anyone else as well. But try as they might I don't think anyone can envisage what it all actually feels like if they don't have it themselves. For other pains etc it can be seen in folks faces and folk can tune in to the feeling. For this apart from during the night no one can see and even with day time symptoms when you're out and about and walking around or speaking to others the symptoms of course tend to go. I had no idea what my poor Mum was dealing with when she got 'fidgety' at the theatre etc as we watched her wiggling her feet about.

So hang on in there. You are not at the end of the road and between us all we'll eventually find solutions. You'll always have support on this forum.

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Leelee, please don’t give up!!!!

I have looked quickly through some older posts of yours to recall your RLS and prescribed meds history. You have tried the dopamine agonists, opioids and now aplha2deltaligands. You current dose of pregabalin is high, close to the maximum and obviously not working any more.

Two things. First, from your posts, I get the impression that you are rather sensitive to medicines. I have that (too). It means when starting a med you have to start with a low dose, lower than the common lowest dose, and titrate up slowly, e.g. weekly adding small increments. I suspect that may not have been done by your md, causing adverse reactions and preventing assessment of the efficacity for you of each med tried.

If the above is the case, go to your gp and ask for codeine (the weakest) or tramadol ( the one but weakest opioid) in their smallest dose to follow the above titrating up schedule. In that way, you may avoid most side effects, or they will be less strong. And it allows you to find your optimal dose: fairly effective with few or bearable side-effects. AT THE SAME TIME, keep for the first week taking your current dose of pregabalin and then titrate down slowly, e.g. by 25mg. If symptoms worsen at a change of dose, give it a few days. You’ll have to tinker a bit with how quickly to increase the vodeine or tramadol and how quickly to reduce the pregabalin.

Second, what are you iron and especially your ferritin levels? I haven’t looked through all you posts, so maybe it’s been said before and you have addressed it. If not, have your gp do an assessment ( ask for b vitamin assessment as well) and ask for the actual figures. Ferritin should ve above 75ng/l, aim to get it above 100. If it is below, don’t take an overload (3x daily) as most docs do, but take ferrousbisglycinate aka gentle iron once daily on an empty stomach (just before bed) with vit C.

Disclaimer. I am NOT a medical doctor and you have to discuss with your gp about your treatment. But given your current state, I thought it warrantes to be a bit directive. Just want to help.

This is a good and comprehensive paper. Long, but you van scroll to the second half for info more relevant to your situation: ncbi.nlm.nih.gov/pmc/articl...

And if you think you are sensitive to meds, keep that foremost in your mind. Oh, and if you can, prepare well and bring someone near and dear to your gp appointment.

Good luck and keep posting. WE understand!!!

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Leelee, I would totally second what LotteM says. I would also add that in general rls responds better to a cocktail of drugs each at a low dose than to a mono-therapy. By a happy coincidence this tends to suit people who are sensitive to drugs.

You probably need to be on more than one drug at a time and each at a low dose. This requires tinkering with the doses. You have to be your own guinea pig. After a while it almost becomes a game - trying to find the optimum combination at the lowest possible dose.

You should definitely focus on your iron if you haven’t already. Get a serum ferritin check for the figure (get the actual figure - not just that you are normal). Maybe you could consider a transfusion if your levels are below 100. Transfusions work really well for many.

You could order the book Clinical Management of Restless Legs Syndrome by Lee, Allen, Buchfuhrer and Hening from Amazon to show your GP.

If you are really desperate you could consider ordering Kratom from Holland. It is not legal in the UK unfortunately but it is less final than suicide or even self harm. It comes by post in an anonymous packet. I find it really helpful in treating my rls in addition to a variety of other drugs.

There are the other management avenues of diet - a vegan/gluten free diet is working wonders for Raffs who, as I’m sure you know, suffers from dreadful rls. It is difficult to stick to but again a better option than checking out permanently. Also supplements eg magnesium and cbd.

There are also more unconventional/innovative options such as dipyridamole and ldn to try.

There are many, many avenues to explore with rls - it is a journey and can take you to unexpected places.

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Good point about the combination! Forgot that.

And also about the various diets. FODMAP, no or very little suger, glutenfree - have a read through the forum by using the search bar. Keeps you mind off other things as well maybe.

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if you are able to travel to London - try getting referred to Guy's Hospital Sleep Disorders unit.

I have seen several Neuro doctors over the last 10 years, and they kept pushing me Ropinirole plus additional pills but I regularly had augmentation, which they ignored, telling me it was I was possibly under dosing!!!!!!!!!.

I think GPs are between a rock and a hard place. They don't have solutions or the time to properly help with RLS.

As we suffers know medication for RLS is personal to a patient. There is no med that can be prescribed that suits RLS because we all need medication that is personal to us individually.

I am on a Pregablin 2 X 150mg per day - so half what you are prescribed, and I also take Trazadone 75mg at night. I'm doing okay - no augmentation since October last year. Pregablin was prescribed by Guys hospital and I can't believe that I am so much better, but fear the RLS creeping back sometime soon.

I recently read that Pregablin is only effective for 10hrs, and that has been my experience. Thus, I take 150mg at 11 am, and 150mg at 8pm. This alongside Trazadone has worked for me. I am not 100% , and at 71yrs have additional health issues, but my life is so much better. I no longer despair, pace the streets at night or contemplate taking my life.

I have 2 labs and a Cavalier King Charles puppy, that rely on me and I have to be therefore, so if my current RLS relief should end sometime , whenever, I will take an alternative RLS med for as short a time as possible, and then restart Pregablin. Possibly that could be a strategy for you, but if you can get to Guy's get you GP to refer you, and please don't harm yourself - struggle but don't give up, ever!

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Good supportive reply. x

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Hi doversoul. Really please to hear you have some relief at the moment. Fingers crossed it is more long lasting than you are expecting. I finally managed to get referred to Guys to the sleep centre at the Royal Surrey in Guildford. It then took 4 weeks for them to read the referral and triage it. I was then told 18-20 weeks to wait. But, and thankfully, I got a call this afternoon saying they have a cancellation tomorrow morning at 10.30am!! I've been down the route of trying all the DA's, building tolerance, and in the case of pramipexole the dreaded augmentation followed by the horrendous withdrawal as my GP got me off the pram cold turkey. The last year has been hellish, but I did get some relief for a few months after they put me on 400mg of tramadol per day, plus the 900mg of gabapentin I was already on. However, after a few months on this the effectiveness started to wear off, and I got really depressed and a little suicidal. So my GP has slowly got me off the tramadol and gabapentin, and instead I am now on Oxycontin 20mg twice per day, plus pregablin 150mg twice per day. I was also put on Zyban as an anti-depressant, which is one of the few supposed not to make RLS worse, and it seems to be OK and has definitely improved my mood. However these new drugs have done nothing for my RLS, I am down to an average of 1.5 hours sleep per 24 hours. I phrase it like that because more often than not I get zero sleep overnight and only doze during the day. I would be really interested in hearing of your experiences of Guys, you obviously rate them highly. Although I appreciate you are unlikely to reply before I visit tomorrow. PM me if you get the chance, would really love to talk to someone who has gone through something similar. I was thinking the other day that although I use this forum, I have never once in the 30 years I've had RLS spoken to anyone else who suffers the same as I do. Maybe we need local support groups where we can contact each other and talk when necessary rather than posting on here all the time?

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I would request your Neurologist to refer you to GUY's hospital for the 24hr sleep study to get to the root of your sleep derivation. You will have a long wait, but it's an essential treatment start point. The team will also develop a strategy for helping to get your RLS under control. However, the sleep study is the initial step. Guy's have a web site that explains the approach it takes.

Good luck and let me know how you get on,

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Thanks, that's about what I expected... initial consultation tomorrow, then the sleep study. I'll let you know how it goes, hopefully I come away with something positive to work towards.

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Hi Leelee you have been given some great advise from the members. There have been many on here who have been where you are now. it all seems pointless, cant do this anymore etc etc. So we do understand. I am extremely sensitive to ALL the meds, and have to take a very low dose of meds, I currently take two Tramacet, they are a low dose of Tramadol plus they have Paracetamol in them. Taking two Tramadol is way too much for me, the side effects the next day i am unable to function,. Along with the two Tramacet, which i space out, not taken together, i take around a 1/4mgs of Pramipexole. I still dont sleep all night,( but i do get some sleep ) because it is a very low dose of those meds, but i cant increase them, its too much for me. I sometimes take one Tramacet and later on one Tramadol plus the 1/4mgs Pramipexole. So, i have to jiggle around with my meds to try to get them to work for me. Can you see a different doctor at your surgery who will listen and take this as a serious condition and will work with you to find a med routine that will work for you. ? Keep going, stay strong and keep talking to us.

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Me again!

I'm on a break from running around, so I thought I'd check in. How are you doing? I have another suggestion for you: write down what you feel and show it to those in charge of your treatment. I got fed up with the way my medical team was focusing on the wrong thing (psychosomatic stuff), so I put pen to paper and outlined my frustration, stated how high my stress level was, and explained how I want my treatment to look from now on so that I can survive! If you are someone who expresses herself better on paper (like me), you may want to try this. So far, so good (I was able to get through to the only doctor I've seen since writing this, my psychiatrist)!

Throughout my journey with this syndrome, I have learned that doctors don't always know what to do. They are human and, like us, can get stunned and overwhelmed. I remember getting really emotional and yelling at one of my meetings with all my doctors together. It was necessary to do that at the time because I needed to get it out, but it stopped everyone in their tracks (including me because I've always tended to hold things in). Silence ensued, then everyone started suggesting things. My point is that it might seem as though the doctors don't care, when in reality they do and are just overwhelmed. Therefore, if you give them something (an outline of what you want done), they are like "phew! Ok, I can deal with this now!" and it becomes less overwhelming and makes a bigger impact.

As well as getting doctors to (hopefully) understand just how dire your situation is, it might help you to feel better too.

Hopefully this makes sense and isn't one big jumble. If too overwhelming in regards to doctors, let me know. The last thing I want to do is make you more stressed.

Keep us posted! We all care!

Take care,

Jessica

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Thankyou all for your replies, I’ve managed a bit of sleep and come round a bit, just hate the thought of another night downstairs on my own getting frustrated. Jess, thankyou thankyou thankyou, you talk a lot of sense and give valuable advice, of which I will be arming myself with on Monday when I see if I can get in to see my gp. Luckily, or not, not sure which way to look at it, but I’m off work another week because of my knee so I can try and sort my self out. Once again, thankyou to you all for replying, it means a lot. Xx

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Oh, you can't imagine how relieved I am to hear from you!!!!!

You are very, very welcome! It would not be fair for me to say that I've been in exactly the same position as you, but I do have a pretty good idea. Getting the point of utter despair is the worst, isn't it? I am glad that you're seeing your GP on Monday. Good luck!

Off to the airport just now to go see my folks in Oregon, USA. It will be a long trip, as I am all the way in Norway. I am lucky to not have ended it all so that I can do this. As a plus, I get to see my 4-legged son Sailor. He's a Schipperke mix that my husband and I rescued in Houston several years ago. Little did we know that we would be transferred to Norway 3 years later and he wouldn't be able to come with us. We were very grateful when my parents agreed to take him. I can't wait to see him (oh yeah...and my parents)!!!

Let me know how the appointment goes!

Take care,

Jessica

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Enjoy your trip, and seeing your fur baby 😊 and parents 😂.

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thanks! Made it to Frankfurt. Do me a favor and never have a layover in this airport if you can help it. It's dark, gloomy, weak air conditioning, and there are not enough signs. I just spent my 1.5 hours going between gates due to making a wrong turn. I'm glad I made it before boarding, but I'm not looking forward to a now-sweaty state of being for the next...I don't want to think how long. Oooh....showers! (Just passed a shower room). Maybe I'll go put myself under one of those. Gotta go.

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How do you cope on a plane with the rls? I’ve never flown, due to anxiety, but I should imagine it’s not very comfortable?

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10 hours later and I made it to Denver! One more flight to go!

How do I cope with the RLS? Well....actually, it's the weirdest thing and I cannot explain it, but I do fine. I wear support stockings, so maybe that's enough? Or maybe it's that coupled with the excitement of being in a new environment (if only just another plane), new people and lots of activity around me, a video screen right in front of me with games/movies/etc. to look forward to, etc.? I haven't the slightest clue, but I'm not going to overthink it. I am just grateful that I can cope. Now, about 20 minutes before landing is another story... Last year when I had trouble 20 minutes before landing, all I could do was sit there and cry. This time I talked to my legs, telling them things like "don't, don't, don't, don't, stop, stop, stop, stop". This mantra seemed to help, I'm guessing because, only if it was just two words, I was still occupying my mind and therefore drawing attention away from the legs.

The only reason I can think of for them starting to move before landing is the anxiety and stress of arriving at another airport.

You probably didn't want to know all that, but now you'll be prepared if you ever need to travel.

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Glad you had a safe and relaxing (ish) flight or 2. Enjoy seeing your family and thankyou for the chat xx

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thank you and you're welcome :)

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Jess, thanks. I did want to hear that. And would have asked you about it. Going on a long flight in a month. Support stockings will be on my list of cabin luggage.

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I agree...any transport at the end of a day can be bad for me so I avoid it...or take a mirapex and hope it works.

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Have you tried tramadol or oxycodone?

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Yes, as I’ve said, I have bad reactions to strong painkillers unfortunately .

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Me, too. I had to slowly build up a tolerance at first. Other than bad side effects, did it help with your RLS? Cuz, you know, "bad reactions" sure beats the alternative...

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I wasn’t on them long enough to find out cos I had panic attacks with them.

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Just read your last reply LeeLee.

I had terrible panic attacks on OxyContin-5 or 6 a day. Dr Buchfuhrer suggested adding pregabalin as the sedating effect stops panic attacks. He was right. I take 25 mg OxyContin a night and 150mg of pregabalin.

As Lotte and ID suggest above, slowly reduce pregabalin down to 150mg to be taken at night while slowly increasing OxyContin to 10 mg twice a day.

I really think it will help you.

I agree with all the excellent advice given to you above.

Sending you virtual hugs. We all know exactly how you feel- most of us have been in that black place.

Take care

Jools

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Thankyou jools, I will ask my gp for OxyContin and give that a go. I also take propranolol for the panic attacks, do you think I will still be able to keep on with those? They are my life saver at the mo.

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Hi Leelee,

I didn't realise you still had the panic attacks. I presumed you meant that you stopped opioids because they caused them.

However, there is only a moderate drug interaction between Oxycontin & propranolol ( slight increase in dizziness/lightheadedness) so I don't think there will be a problem with your doctor prescribing them together.

Hopefully, the oxycontin at low dose & pregabalin at a lower dose ( 100-150mg) will show an improvement to the RLS.

Let us know what your doctor says and how you get on.

Night night

Jools

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Hi, yes, I’ve had anxiety for years, it was under control for many years until I decided to stop smoking with the aid of champix, that’s when the problems started, the panic attacks returned. So had to stop the champix, but months later I was still having attacks. So any other strong medication is now a no no. On the plus side, I’ve been stopped 8 months now, so it did help. Hopefully my gp will still give ms them both. Will keep you informed.

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Leelee, have you tried or thought about therapy for your panic attacks...? It could help.

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Hi Elisse, I’m actually seeing someone at the mo, albeit I’ve only seen them once upto now, waiting for a follow up appt...

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Well done for giving up smoking. That will definitely help with the RLS as well. Stay strong.

Take care

Jools

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Hi Leelee49. I sure have been where you are and know the desperation you are experiencing. By accident I discovered a little trick that helped calm my legs - heck it calms my whole body. It sounds crazy but it works for me. I chew spearmint gum. Since it’s been sucpected that the Vargas nerve may be the perpetrator in RLS episodes and it runs behind the ears - the chewing motion may not be so crazy. Anyway it works for me.

Wishing you a good nights sleep

Crazzylegs

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Hi, thankyou for that, it can’t hurt to give it a go, will let you know.

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(sorry to butt in here, but..) Hey, that's really interesting!! It's weird what works, isn't it?

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Hello Leelee

I can totally understand your situation. I was there - RLS episodes day and night, little help from my family doctor. I saw a specialist but he had nothing to offer me. I've been on Lyrica (pregabalin) for 8 years but it has run it's course - never really helped - and I now have side effects, mainly depression, so have begun to wean myself off this drug. I finally bought a Relaxis pad and it was like a miracle. It took a few weeks to work but I am totally pain free. It is quite expensive but you can rent it at first. Please give it a try. They will keep in touch with you to find how you are doing and take you phone calls any time. (talk to Carl if you can) Now, after 3 months I only need to use the pad once or twice a week and have had no episodes at all. Good luck!!

Darena

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Hi Darena, thankyou for that, so are you rls free now? Or just the pain?

Just to follow up on my other post, spoke to my gp, he said I can try pregabalin 100mg 2x a day not 3, 3 isn’t allowed apparently 🙄 and also low dose co-codamol. Will give it a go, but not happy with him, only spoke over the phone, and it was like he couldn’t get me off quick enough, even though I wanted to ask lots of questions. Why are they like this? Why is rls nlt treated as something as bad as it is? It js so frustrating.

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Well I’m trying what my gp suggested with the 2 pregabalin and co-codamol, I despair, my leg is going crazy every day and night, just don’t know what to do. Been signed off work another 2 weeks with my knee, got pain in that still. I’m really struggling here again, anymore suggestions, apart from hold my gp to ransom 🙄

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Hi Leelee,

Did you reduce from 600mg of pregabalin down to 200mg? That’s too much, too quickly.

Any reduction in pregabalin has to be very, very slow. Ask for 25mg pills and reduce by 25mg a week. The GP should know that these are strong anti- epileptic drugs and you can’t just reduce a massive dose overnight. I despair of how GPs treat people with RLS.

Please call him tomorrow and say you are experiencing strong withdrawal symptoms on the pregabalin and want to reduce by 25 mg a week & demand he prescribe the 25mg pills instead of the 100mg ones. It’s annoying to take so many of the little buggers but it’s the only way to reduce slowly.

I’m really sorry that you are having to go through this and that your GP has made it worse by telling you to reduce from 600 to 200 overnight. The med leaflet explicitly warns against stopping it suddenly ( that includes altering the dose so suddenly).

I think it will ease off when you go back up to 575mg a night.

Also ask him to consider the OxyContin at low dose. You could take 5mg in morning and 5 mg in evening . They would help the pain, the RLS and the withdrawal from the pregabalin. In the UK, Targinact ( a combination of OxyContin and Naloxone to stop constipation) is the only med licensed by NICE for RLS. If you eata healthy diet high in vegetables you should be fine on the simpler OxyContin. The two meds at lower doses will be better for you than pregabalin at such a high dose.

Cocodamol is ok but I found it didn’t help with RLS or withdrawal.

(Another possibility is to try low dose Naltrexone which some people have reported has helped them with withdrawal and RLS - but you can’t use it if you’re taking opioids.- but maybe that option is for later)

I think you need a long appointment with the GP and print off as much information as you can to show him.

I really, really hope he listens to you. Show him this thread- if he’s open to hearing about this condition and how truly life affecting it is.

Fingers crossed you get him to help you properly.

Virtual hugs over t’internet.

Jools

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Thankyou once again jools, I will call, armed with all your advice. Fingers crossed I, and my doctor get it right this time...

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Superb advice from Jools. For sure reducing pregabalin in that way will cause problems.

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Is there a big problem in the UK to change doctors? Yours is a lazy dill with zero compassion and he should be flogged with his Hippocratic Oath.

Isn't there anyway you can just go to another doctor?

My daughter was crook while she was working in London and she apparently just walked into a surgery and found a helpful GP.

I hope your doctor takes a long holiday somewhere so you can see a locum.

Persist and listen to the experts on this forum about your medication. You might just have to educate the man.

Cheers

Graham

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Its not easy to just change doctors here in the UK, you can see another doctor in the surgery if that surgery has more than one doctor, my surgery has many doctor. But if you want to change surgeries that can be more tricky, it has to be a surgery in your catchment area, so within a few miles of where you live. Not everyone has one close enough that they can move to. Glad your daughter had a helpful GP while she was in London, but was it for RLS she was looking for help from a GP.? Not all doctors unfortunately know enough about RLS, and thats in many countries not just the UK.

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Hi Elisse

I now understand a few things I have seen on UK TV shows in Australia. It sounds like a system designed to support bad doctors. Our system has the disadvantage that you might know a fabulous doctor but she has such a good reputation that patients travel a long way to see her and they are happy to put up with a 6 week waiting list. So here it works that you want to have the doctor that's too busy to see you and you need to avoid the doctor with an empty waiting room. When I put it that way I'm not sure which is the best system!!!

Thanks for your concern about my daughter but she was not looking for help with RLS. The doctor might have failed that test.

I can vouch for there being many doctors in Australia who don't understand RLS but I expect them to treat us patients with respect and perhaps even sympathy if they have bad news.

I just realised that I consulted a neurologist who treated me the same way as Lee Lee. After telling me I had tried all the drugs that might help (which was incorrect, I have since found out from this forum) I said I would keep working on the diet and hope I could improve my condition. He laughed sarcastically and said "Good luck with that" I still don't understand why I paid his bill, I must have been in shock.

Graham

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Its not a system to support bad doctors. They are not all bad. i have no problems with my doctors.

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I’ve seen a couple of different doctors since seeing him, 1, who didn’t want to listen to anything I said, or read any suggestions of what has been put on here, the other, I saw for an injury to my knee, who seems a little more open, I’m working on it. I’m down to 2 x 200 mg pregabalin a day now, but I can’t work out when is the best time to take them. My legs start about 1am until 6am then I get a few hrs of sleep, then I wake up for it to start again about 2 hrs later. It is then on and off through most of the day. Stopped the co-codomol as it wasn’t helping, was given naproxen for my knee pain but had to stop straight away as caused panic attacks.

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Also, the dr I was talking about, believe it or not, is the senior dr at that practice 🙄 beggars belief.

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Hi LeeLee I've sent you a private message with an updated list of things that have been mentioned in the forum. The ideas have helped someone so perhaps they will help you.

Good Luck

Graham

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Thankyou

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