Is anybody still here on this site? I have posted a few times needing help or advice but all I hear is crickets........surely someone has something to offer, even if it just a comforting hang in there. Sorry for the whinge but I'm close to giving up completely as no one is helping me in the professional sector, just letting me rot at home. Switzerland is getting closer.
Is anybody still here?: Is anybody... - Restless Legs Syn...
Is anybody still here?
33 Replies
•
Most members are around. It's 19.25 pm here in the UK.This is a UK site so most people tend to comment in the morning or late evening.
Is the Buprenorphine not helping at all? What dose are you now taking?
in reply to Joolsg
No Bup is having no effect now....... they are not offering me anything else. I am having acupunture starting this week and if that doesn't work I give up. I have posts from days ago that have not even been acknowledged......anyway......I'm use to being alone in this fight now.......
Joolsg in reply to
I suspect it's a glitch. As Elisse says, there don't seem to be any unanswered posts.What dose are you taking? I remember the pills did work, but your doctors refused them.
Can you see a different specialist who is prepared to prescribe pills at the correct dose?
What about Dr Brendon Yee? I'm sure he would do phone consultations.
Acupuncture works for pain, but there aren't many good reports for RLS.
I remember wasting a lot of money on Acupuncture and then chinese herbs.
Hang in there, I think you will find a doctor in Australia who will prescribe Buprenorphine pills.
It works for me. I take 1/4 of the 2 mg tablet.
I care for you but have nothing to offer - but definitely hang in there.
I have looked at your posts on here and can’t see any that you have posted that no one has answered you. the last few days. Some you posted to other forums. Maybe a glitch on this forum and didn’t get posted is all i can think off. I am sorry you are having a rotten time. Tell your doctor how you are feeling that you are about to give up they NEED to help you. they SHOULDNT leave you like this.
Are you still taking propranolol? I was put on this and after four days I ended up ih A & E in a bad way. Shaking, severe anxiety, could not keep still and many other symptoms. I was taken off this drug straight away and told not to take beta blockers again. I even suffered quite marked hair loss after just four days treatment.
Your symptoms of tugging and electric shocks, etc are not completely typical of RLS. Who diagnosed you and what did they suggest? I note you suffer from neuropathy as well. Joolsg has suggested a doctor you might be able to contact. I think you should go down that track. You are obviously suffering severe anxiety from all this and perhaps you could get some help for this as anxiety makes everything much worse.
I hope you can contact a doctor who will go into all your symptoms in detail and try to sort out how to give you the help you obviously need as you are obviously feeling so depressed and upset. Can you take anyone with you when you attend the doctor as they might be able to support you and make the doctor listen to how bad you are feeling. All good wishes to you.
in reply to Jelbea
no was taken off propanolol, no improvement in symptoms though
It's rotten to be thinking no-one is caring.
This is a very busy site and we are all volunteers with our own ills and worries.
You are being listened to and have had help and advice.
Sometimes it's lonely when the pain gets too bad and there seems no way forward.
Hang in there and keep trying for solutions.
All the best
So sorry you are desperate . But I don't take any meds so can't advise on them. I still recommend Therapulse in the evenings or whenever....improves/ disappears after but not during. I have recently tried Sweet Bee magnesium butter every night on soles of feet, legs.,. Helps.. Also a CBD Gummi and CBD oil.The only supplements I take are magnesium, calcium and Vit D, CQ10.. take Amlidopine and Avavastin for high BP and cholesterol ....I'm 76. Do hope you can get some help...thought GPs in Aus were good?!
hello - if it’s any help I also get tugging / electric shock sensations in my legs - my left one is the worst - I pressume that’s because it’s more damaged than the right. I initially took roprinirole which completely relieved all symptoms (before causing augmentation) so that is proof that I have classic RLS. I also have quite severe plmd meaning that during the night at least one leg is kicking at about nine second intervals. Every time I wake up I take my next tablet and I can usually sleep for a couple of hours before being woken up again by my leg(s).
I’m just telling you this to show you that everyone’s symptoms are different and other people do also experience the type of symptoms that you describe. It’s terrible and difficult to endure - the best we can do is find a combination of drugs /iron / exercise / food restrictions that make the situation tolerable. I know how sometimes it can feel hopeless however the good days make it worthwhile and research in this area is progressing all the time so we need to have hope 😊😌
I'm going to go and have a look now at your other posts, but this is the first one I've seen. I'm not on here all the time as my life at times is mad, but I do try to check in from time to time. Never feel like you're alone, as you aren't. We are all here, but maybe like me, others didn't see your message.
Der Kathandkell,
It is strange because I only received your post a couple of hours ago!
I am so sorry that you are really struggling but believe me and some of the replies you eventually received there is a lot of support on this site as well as more experience of RLS than there appears to be in UK (& Australia) in the professional sector.
I tried acupuncture for my RLS.. waste of money in my opinion.
I haven't reached the stay of trying Buprenorphine yet and so can only refer you to Joolsg , Sue J and madlegs1 and many others for good advice.
Good luck and keep posting
Davchar
What is your question
I've been back through looking at your messages - a couple of things strike me. First you seem to have a variety of health issues, and therefore a variety of medicines, which could be part of the cause of the RLS. Your posts often seem less of a question and more of a cross statement about something you're experiencing, so I'd say this is why you're not getting replies. I think we'll all help if we can - personally apart from telling you what I do - exercise for my legs, taking iron tablets, magnesium occasionally and a sleep hygiene routine (where I try to go to bed and get up at the same time every day), there's nothing else I do , and nothing I can advise you on medically either. I would say we ARE here for you, but we aren't doctors and you have more than 1 health issue here which complicates things.
Hello, Kathandkell. I feel how frustrated and anxious you are. I go through periods where I get desperate and want to give up. When that happens, I try to relax with some deep breathing and reevaluating my current situation. Sometimes easier said than done! So sometimes I pace and cry or think what I could eat or pills I could take. Then I usually calm down enough to remember that actually less is more. This site has helped me reflect on suggestions or do my own research or make lists of what I should and/or should not do. I have several things that I keep handy but only use occasionally, which is a luxury but I am thankful to have an arsenal built up over the years. Sometimes nothing works and I think I will not make it through the night but I know my support system is there and I should use it. I hope you are able to pause and find someone who can help you examine everything about your current situation in order to help you make some decisions. I have several health issues and thanks very much to several helpful posts from the knowledgeable and kind people here, have prioritized my meds and other lifestyle practices. For example, diet has helped me discontinue a daily statin for blood pressure and mild exercise has helped me reduce my anti-depressant. Deciding to stop taking antihistamines or decongestants was very scary but my body adjusted (and I keep tissues handy). I changed my migraine meds (VERY scary) and seem to be adjusting okay. Several months ago, after struggling with lack of sleep for several days, I finally decided to try a more structured routine which was quite different from what I had been doing for at least 10 years. Now I only get about 4 hours of sleep but I don't even try to take naps because I know RLS will kick in. So I have things I can do for short periods of time and I know I can only sit for about 30 minutes at a time. It is not easy! I don't always succeed! But I have not had a totally sleepless night in a month now. It is a work in progress and I know I will always have to tweak it. Sometimes my husband reminds me that I may need to adjust something or change something or just reevaluate. Our lives are much different now than they have ever been in the 53 years we have been married, but I am blessed that we have been able to continue to support each other as we navigate this phase of our journey. I realize that none of the replies may sound helpful to you because your situation is unique. However, please accept the feedback in the way it is intended. People do care and really want to help. Don't give up. I have learned that I will have a relapse or a sleepless night (or 2) again in one area or another but the effort is worth it, even though it may not seem like it when your are suffering through it. BarnGir1
Hi there sweetheart I've just read your post. I too have been on the edge of ending it all. I've tried everything with no avail. When I told my Dr I've had enough I was referred to Jose Thomas and his associate Helen Fowles who practice in Gwent. Mr Thomas does px outside Gwent I understand from this site.Methadone was prescribed , after a few months increasing eventually to 10mg X daily helped. The awful gripping, restless, agitated legs non stopped has reduced. But still have the uneasy feeling, tingling no complete rest but I can control it managing to sleep.
I cannot eat anything with sugar foods more than 3-4 mg. I have to watch this otherwise I'm in trouble again. It's worth it to have 4-5 hrs sleep rather than 1-2. We're all different and you will find answers for your RLS hang in there Kath.
We're with you always, listening and will try to encourage you. Sending love, blessings and support. XXX
I hav REM sleep disorder, which has some arallel, but is no help for you...sorry
Hello Kathandkell. Sorry you feel that no one cares but I can assure you that that is far from the reality of the Forum. I am in the UK and have only just seen your post from 4 years ago, although I wasn’t a member then but anyway it’s just popped up, your recent post of 20 hours ago has only just reached me. I have classic RLS and don’t recognise your symptoms so as well not being medically qualified I can only provide you with my sympathy for what you’re experiencing.
Some of the replies to your recent post appear to point to you having various health issues and it’s a known fact that various conditions affect RLS and it’s severity. Have you discussed this with your physician and how aware is he or she of RLS, the causes and treatments that are available, can you find a medical web site in Australia that deals specifically with RLS ( Willis-Ekbom disease) like the Mayo Clinic in America. Have you had your condition professionally diagnosed as RLS and what was prescribed for it, if it hasn’t then May I recommend that you do so as it’s important to have a correct diagnosis. Apologies if I’m doubting up on what other have said. Lastly if you are diagnosed with RLS it’s not always easy to get the correct medication prescribed as in the UK not only is the medical profession profoundly ignorant about the disease but you have to fight like the very devil to get Opiates prescribed. Sorry if this hasn’t helped but best wishes anyway 👍
Hi, sorry to hear you’re having a hard time. I have restless legs too and some neuropathies. I’ve tried Amitriptyline which I found worked well but only if I took painkillers on top . I then tried Pramipexole which again needed pain killers adding to it but I decided with my GP that if I needed painkillers for the medications to work then I should try something else.
I’m currently trialing a medicinal cannabis oil which surprisingly I have found very helpful although I am still having symptoms on and off. But, when it does work it’s great, I’ve not had to take painkillers on top and it feels like my legs have been anaesthetised! And it really helps me feel sleepy and I feel my quality of sleep is better as well. I can’t vape the cannabis as I’ve a lung condition but I’m told that this is a good option for instant relief. The oil takes around 1.5-2 hours to kick in.
I get my cannabis oil prescribed privately by a clinic and it’s affordable, they also prescribe the ‘flower’ for those who can vape, can you get it prescribed where you live?
I hope you begin to feel better soon and find the answers you are looking for.
Hi, I just read your post. What all is going on? I think you have a-fib? Is that why you’re not getting any help? Are doctors afraid meds might affect your a-fib?
in reply to BettyRae
I don't know, I hope at the moment my AF does me in.
I just read about a new drug just approved by the FDA, federal drug and food administration.
NTX100Tonicmotor activation system, NTX100toMac. Don’t know anything about it, but will be looking it up. Has anyone used it?
My neurologist has contacted the company that makes these devices. I am on the list to get one but I don’t have it yet. I’m not sure insurance will cover it. Evidently, it is similar to a CPAP machine in that it needs to be adjusted by a medical supply facility. That is where I see a problem. However, if and when I get my TOMAC I will post my results.
Put it in the search box. There have been a number of posts about it.
Hi there,Everyone does care, as evidenced above.
It really seems that you have tried everything !
Some of us here just have rls, and some, like yourself have other conditions, which complicate matters.
But it seems at the moment you are having issues with extreme anxiety. The only thing that I can suggest is being prescribed valium, or something like that, which you gp MAY do, but very likely it would be a low dose for a short period .
I truly understand about meds. Tasmania is now the strictest place in Australia where being prescribed opiates or benzodiazepines are concerned.
The only thing I can think of is to see a psychiatrist. I know they are hard to get into. You are not crazy.. but a psych can prescribe tranquillisers, on a more regular basis than a gp. They may also give other therapies, that could help ( no, I don't mean psych drugs or cbt therapy).
I wish you the very best of luck.
Tasmania is SO small, and our choices are so limited here.
I am hearing you re Switzerland. I too have thiught about that trip !
Just a specific comment- one of the posts above asked if you were still on propanol. I was on a low dose last year, went through a difficult time (which was due to my wife dying of cancer- I hadn’t dealt with the loss properly) and my doc increased the amount. It took months to realise it, but I am sure the RLS got worse and my mood changes were extreme- it nearly ruined my relationship with one of my daughters. I came off it when my therapist asked why I was taking it and i suddenly realised what it had done. I did have withdrawal but at the same time that was a small price to pay for going back to normal.
There are plenty of alternatives- just a suggestion you should discuss with your doctor. You will find your way through this.
hi there, I have a few suggestions for your RLS.
Magnesium Glycenate has worked wonders for me.
Also Lemon balm, I rub it on my legs. Also nettle balm is Fantastic for pain. I buy my balms from a lady in the UK. I see your in Oz, she does get customers from there and one pot is £5 so in Aus dollar’s really cheap.
Hope these helps
Hi Kathandkell,
I think many of us here have thought about the Switzerland trip at some point, including myself.
Over the past 10 years I also have experienced the electric shock/tugging sensations you speak of. It’s like a build up of sensations that culminates in the horrible electric shock/tugging sensation. It feels like something is either prodding you with a cattle prod or reaching up inside your leg and tugging on it. It came at night when I was tired/relaxing or when trying to sleep. I had no choice but to get up. It was a horrible time and I would see the sun come up before getting any sleep. I wanted to end my life.
3 years later it’s mainly the tugging sensations, although they are moderate these days. It has slowly improved over the past few years. I can’t put my finger on exactly why that is but I suspect it’s a combination of reasons:
1- I’m off siffrol (pramipexole) and other anxiety drugs including ones that a psychiatrist prescribed me that caused my tugging/electric sensations to return which was traumatic so I understand how horrible it must be for you to endure this on an ongoing basis.
2- It’s difficult but I try as hard as I can to avoid triggers in diet which include excess sugar (ie sweets), alcohol, msg etc… I’m also discovering that eating too much/too late in the evening probably doesn’t help my symptoms at night either.
3- I asked my doctor for an increase in my buprenorphine (Temgesic) from 1 tablet to 2 tablets per night. Most nights I’m taking anywhere from a 1/4 to a 1/2 tablet extra at night. In other words that I’m either taking 2 & 1/4 tablets, 2 & 1/2 tablets or sometimes more. More is rare because if symptoms are persistent I’ll give up on the medication, get up and rely on my tried and tested alternative (masturbation)
Some nights I get away with 2 tablets, on rare occasions it’s less than two tablets. I don’t really know why this is. It could be diet or some other factor. Some nights my legs are good and other nights the symptoms persist and I have to rely on the tried and tested masturbation in the middle of the night to get a natural dopamine boost to my brain which helps settle my legs most of the time. I also get to bed too late at night (12am/1am or later) so if my RLS does persist I don’t get to sleep til 4am or so. I should try to get to bed earlier but after more than 10 years of sleep affected RLS/shift work it has moulded a new routine.
I also suffer from anxiety/depression and ADHD. I’m not on any medications for these as they either kept me awake or made my RLS symptoms worse.
I also live in Australia so I understand the ignorance, lack of empathy and lack of RLS knowledge Australian doctors have. Feel free to send a private message if you are so inclined.
Ps: I’ve been told there is a story on A Current Affair coming up (I don’t know when) that is about RLS. A work colleague told me she saw it advertised on tv. More stories need to be told about this horrible disease. It needs to be brought to the attention of mainstream media. I can’t believe there is not someone out there who is high profile and suffers from RLS who could help raise awareness… it shouldn’t be an ignored topic but somehow it is. I find this both unbelievable and irritating at the same time. It should have a voice.
in reply to RestLessLeg
my tugging and cattle prod is 24/7 , won't let up.....I can't do this much longer.
I just started a cpap machine 1 week. I do think it is actually helping with my RLS! I haven’t had a long episode since starting. Last night first time started in my shoulder blades.
Try to find a reputable Sleep doctor he should order iron check as well as a sleep study. Look on rlsfoundation.org
Good luck 👍
Kath-you posted a day or so ago and you had 19 replies. I specifically wrote to you and told you to order red strain kratom powder online ASAP. It works so fast and you can sleep! Use until you get the correct help. Find that page and see all the nice people who wrote to you! Hang IN!!
Not what you're looking for?
You may also like...
Is there anybody there?
immortal words “what are you doing up at this time? Just come back to bed and see if you can get to...
Has anybody ever experienced this?
though I've had RLS since 2012. I was just wondering if anybody else on here experiences this.
The Jerks! Does anybody else get this?
have started a new thing, my arms or legs, or even just my hands and fingers have stated to jerk...
Related Posts
Has anybody seen this new research?
Still Looking for Suggestions
Hi! New here and pregnant. Moderation team
KaarinaAdministrator
