I'm done

I can't do this much longer....24/7 electrical tugging and pulling in right leg, jerking, my toes curl down. I haven't slept for 2 nights now....continually drenched in sweat, nauseated and vomiting from lack of sleep. I'm done....I want this to end

[SueJohnson]

Don't give up. Hang in there. Others have been there and come through and you will too.

[Hidden in reply to SueJohnson]

The gp has taken me off buprenorphine patch and wants to see how I go with acupuncture .....I'm going through withdrawals as well as increased symptoms. I don't know whether these drenching sweats are because of this or menopause....I had the drenching sweats on the patch......I'm worn out....I have woken up every day fighting , don't want to do it anymore.

[SueJohnson in reply to Hidden]

Your GP should never have taken you off the patch cold turkey and made you go through the withdrawal like that. If you still have some patches try cutting them so you can come off it gradually or better yet call up your doctor and explain what you are suffering. Acupuncture has not been shown to help RLS although it may help a few.

[bumblebee_tuna in reply to Hidden]

Why did he take you off buprenorphine, are you not tolerating it?

[Hidden in reply to bumblebee_tuna]

My leg was just as bad on them as not taking them. I felt on the patch I could tolerate the leg better.........but I still had the symptoms. So we discussed staying on an opioid when it wasn't making much difference and try to get off it and try natural. I can't take gaba or any of those drugs.

[bumblebee_tuna in reply to Hidden]

Did you try other opioids, sometimes it’s just finding the right one

[lorrinet in reply to bumblebee_tuna]

I have full-body RLS and have been on opioids for over 25 years and have never had to increase the dose, although I do have to repeat it once during the night. I can live with that though. Even if I can't sleep (chronic insomnia) at least I can lie peacefully in bed. I also have to ensure I eat enough fruit and veg to avoid constipation. It's all about managing this awful condition.

[Weezie99 in reply to Hidden]

Perhaps your opioid was the wrong dose for you? I finally got relief on 10/325 up to 5x a day if needed. I try to stay active during the day so as to save the Vicodin for at night and sleeping. It works for me, and I can definitely tell after about 5 hours that the effectivity has worn off. Because, that horrible pulling/anxious feeling starts again. Before discovering that opioids were an effective and sanity saving option, I was emotionally and mentally in the same place as you. I'm fortunate that my doctor could see how significant of an issue the RLS is for me, and was ok with prescribing this med. I have to see him every 30 days for evaluation, and he orders labs every 4 months to keep tabs on kidney function. 5 years in now, and I've never needed an increase in dose. I hope you talk to your doctor about upping your dose, or that you can find an acceptable and effective alternative to ease your misery. Tight hugs.

[RCHD in reply to Hidden]

The sweats might surely be due to menopause. Not sure if you are able to use bio identical hormones? It might help with some of your symptoms, including the restless legs.

[Birdland in reply to RCHD]

I did bio identical hormones. Made my RLS go through the roof.

[RCHD in reply to Birdland]

Wow interesting, it’s helped me personally although I didn’t have a huge issue with it . But has helped others … I guess it depends on the person.. and the amount etc. in general it lowers inflammation for sure

[SueJohnson]

If the acupuncture doesn't work, post back here and I can give you some other suggestions.

[Hidden in reply to SueJohnson]

Will do, going through horrific withdrawals at the moment ...so anxious and my left leg has decided to do what the right one is doing....very distressed and finding it hard to cope

[Strike26 in reply to Hidden]

Hey kid- no sleep for years (lately it’s improved to 2/3 hours per night and I do mean “improved”), hard end jerking with no relief some days, tried everything and now on Gabapentin (80% relief) along with painkillers. It’s not ideal- it never will be I guess. And yes, I know the despair you are feeling. BUT, your answer is out there so never give up hope- use the fantastic people on this site. We are here for you and for each other. And in a while you’ll be posting this advice for someone else in your situation.

[Drls in reply to Strike26]

Hello Kathandkel you are definitely having buprenorphine withdrawal - I’ve had terrible sweats, panic and feelings of dread and suicidal thoughts with just changing a dose… once the withdrawal subsides you will feel more like yourself and be able to make more measured decisions. See it as a short term ‘hell’ that will get better. Since it obviously doesn’t suit you it’s probably good that you are coming off of it.

Your Dr doesn’t have a clue / there must be someone in your region who is more helpful and informed about RLS. You probably need some short time acting opioids to help with the withdrawal - your Dr may help with that if they understand the level of withdrawal you’re having.

Please don’t give up - im likely to be in a similar situation soon because buprenorphine doesn’t work for me either and I suspect the only way forward will be to come off of it. Please go back to your doctor and get something short term and ask for a neurology referral. Good luck - I’ll be thinking about you ……as I’m sure others on the site will be

[Nanpat in reply to Drls]

Hi, am just wondering is the Bup not working for you or are you suffering from side effects?

The side effects were too much for me so I tried stopping and switched to Targin twice daily, only lasted 2 days, had most awful withdrawals and so put patch back on. I wish you more luck than I had with your adjustment when it happens.😊

[Drls in reply to Nanpat]

Nanpat, targin / oxycodone was the worst experience ever for me - from the day I took it I knew I was getting severe withdrawal when my next dose was due - when I eventually came off it and swapped for the 5 mcg bup patch I had full on opiate withdrawal for a week 24hrs and then less so fir another week - I would never take it agsin - although I realise it is a lifesaver for some people so everyone is different.

I’m contemplating going back on the bup patch but I mentioned to my dr about changing it every 5/6 days not 7 and he became very angry with me and basically treated me like an addict. I have a consultation with prof Walker (UK) in November so I’m going to limp along in my sleep deprived state until then.

I think for some of us having some symptoms / side effects is inevitable and we need to accept the best situation we can at the moment and hope / prey for further research to find other treatments xxxx the best of luck to you xxxx

[Nanpat in reply to Drls]

Targin worked wonderfully for me for a while till my body got used to it, same as Bup, but now having tummy/Bowel issues that I can’t put up with. Thinking my system may just not like opioids 😒 did you have bowel pain?

My patch definitely lasts me the full 7 days. I wonder what your dr thought you should do the last couple of days that patch isn’t working? They should really offer you suggestions!!

Yes agree there will be side effects for most of us on something, good luck to you also, hope you have a better consult w Prof Walker xx

[Hidden in reply to Nanpat]

Have the side effects settled for you now? What effects did you get?

[Nanpat in reply to Hidden]

No haven’t settled, didn’t have any first 10ths, but now awful tummy/bowel pain, constipation, that’s the worst.

Randomly falling asleep in evenings but I could live w that

[Rwall in reply to Hidden]

Hang in there! It takes what seems like a lifetime to get meds straightened out and give up everything in your diet that's a trigger! You'll get through it and know we all are here for you, and we've all been there, trust me. Have you tried Xanax at all? It helps me get to sleep and my doctor is kind and prescribes it. For me it's agony to get to sleep, but once I am, I don't notice the twitching and sensations. It took a good 2 years for me to figure out what worked and I thought I couldn't take another day, but I just kept at it, and finally found the right combo for me.

[Tildabri]

I'm really sorry that you're at this stage. I've just come through a couple of almost completely sleepless nights, with RLS moving from one leg to the next, so I can imagine how exhausted and drained you are. If you're going through menopause at the same time, that would make it much worse. At least it seems that you can speak to your GP, so maybe push for a different opioid. Best wishes!

[calschwartz27]

can u get any thc? it and gabapentin have saved me. fortunately i am in a state where marijuana is legal so i dont have to worry about it being mixed with bad things. so sorry- i hate RLS and i wish there could be a cure for us.

[Hidden in reply to calschwartz27]

thc makes me very anxious, I am taking cbd broad spectrum in the morning and a sleep mix of cbd and hhc at night

[Jumpey]

I think your doctor has behaved unethically and caused you severe withdrawal symptoms. You could email Dr.Buchfuhrer for some advice and show that advice to your doctor. I would definitely seek out a different doctor in the longer term. Hang on in there.Things will get better. You could try buying codeine over the counter to see if that helps. I took it successfully for several years.

[Hidden in reply to Jumpey]

Can't buy codeine over the counter in Australia.

[Jumpey in reply to Hidden]

I'm sorry to hear that.Co- cocodamol?

[RestLessLeg]

Hi Kathandkell,

Im so sorry you are suffering terribly with RLS. I know the electric jerking sensations you speak of. There are no words to describe how torturous and traumatic it is… let alone having it 24/7.

I’m probably not the first to ask this but why not ask for the sublingual tablets instead of the patches? I’m not sure what the dosage of the patches are but maybe they aren’t strong enough?

From what I remember from some of your posts it sounds like you have refractory RLS that hasn’t responded to the usually prescribed medications. I’d say you definitely need an opioid of some kind to control your symptoms, that’s a given.

But to be suffering 24/7 with the electric tugging sensations makes me wonder if there is more than one issue at play. Maybe a few issues need to be attended to before you start to get relief?

If I was in your position and given what I’ve learned from being on this forum, I would do a number of things.

Firstly it sounds like you desperately need an effective opioid to help in the short (and long) term. Although some on the forum have had success with the buprenorphine patch I don’t know why your doctor wouldn’t be prepared to prescribe you the sublingual form as an alternate if the patch is not helping. I mean, if they’re prepared to prescribe patches why not the tablet form? I was prescribed sublingual Temgesic but it took almost a year before I found a more effective dose. I was first prescribed 1 X 200mcg tablet which was good for about a month before my symptoms deteriorated. I went on suffering for many months before finding a doctor who not only was prepared to prescribe temgesic but was happy to increase the dose when I discovered an increase in the dose helped me. I’m now on between 400-600 mcg, depending on other factors such as what trigger food I eat, anxiety etc. As others have said maybe buprenorphine is not the opioid for you. If this is the case then others on the forum have had success with alternatives such as Oxycodone or Methadone. I know these are difficult subjects to bring up with ignorant Australian doctors (yes I’m Australian) but when you are at the point where you are considering taking your own life your doctor needs to decide on whether he/she wants to protect you from possible ‘addiction’ or read about you in the obituaries column in the local paper… it’s as simple as that. If your doctor refuses to help you need to find someone who will. You need to arm yourself with the updated Mayo Clinic algorithm for treating RLS. Have a printed copy to show your doctor.

I would have blood tests to check my iron levels. I would start taking iron tablets every second day to increase my ferritin level as much as I could. I’m hoping to raise my ferritin to over 200. Not everyone benefits from increasing their (brain) iron levels and I’m probably one of them but it’s worth trying.

I would stop taking medications that exacerbates RLS or at the very least find suitable alternatives to those medications. When doctors had me on medications such as siffrol it was the worst period of my life. Other medications such as Amytripyline and Escitilopram made RLS worse and other anti depressant medications such as Quetiapine put my RLS into overdrive. You need to review any medications you currently take.

I would stop eating/drinking any inflammatory foods such as sugar (all sweets), alcohol, soft drinks, msg etc. I found even chips (ie crisps) can make my legs worse. Starting a food diary of what you eat may help to narrow down triggers.

My life isn’t perfect. I still get RLS. It can be enough to keep me awake at night sometimes. Temgesic doesn’t always help to fully control the symptoms, especially when I eat the wrong foods. In these situations I either have to take more medication or resort to masturbation to get relief from a dopamine rush. But the sensations are rarely like the terrible electric tugging sensations I used to get. I’ve realized now how much worse my RLS was when I was on trigger medication, ate sweets, drank alcohol/soft drinks and ate foods such as Chinese or Thai that contained msg.

All these factors (for me) added up to more profound symptoms. When I addressed them my life improved. Everyone is different so this checklist may or may not help you.

I’ve become more aware of things that make my life miserable with RLS thanks to this forum. Maybe a review of what you consume combined with the right opioid may change your life for the better.

Best wishes.

[Hidden in reply to RestLessLeg]

I was on Temgesic sub tablets but kept getting withdrawal symptoms on them.....I have showed my gp and specialists the algorithm and all have poo pooed it and said I am the dr not you. I have had 2 iron infusions with no success. I have graves disease and now hypothyroid , don't know if that is not helping. Close to giving up as nobody seems to give a shit that you are so close to jumping, all they are worried about is prescribing opioids and protecting their own arses.

[ELLSBELLS in reply to Hidden]

Hypothyroidism can cause RLS. Are you on sufficient levothyroxine? Thyroid UK suggests TSH of 1 or under is best but most GP's and endocrinologist in UK do not agree with this and under prescribe causing much suffering. This is another illness where patients know more than doctors. Please don't give up we all understand your utter exhaustion and frustration but there will be an answer if you can find the right doctor.

[Drls in reply to Hidden]

I completely agree kathandkell it’s the sane in the uk - all back covering and no duty of care, my gp did not care that I was feeling suicidal just that he might be implicated if opioids were involved - he treated me like an addict for asking to try a higher dose and said that he had been ‘very accommodating’ for prescribing the drug in the first place, even though he had the backing of the consultant. The notion that he was there to help me find something to alleviate my symptoms had gone completely out of the window. The reality is that so many of us regularly feel we can’t continue but somehow find something to keep us hanging on. Your drs sound horrendous - there must be some better ones out there in your part of Australia???? Can you pay to get a different opinion? X

[Hidden in reply to Drls]

That was paying through private health

[RestLessLeg in reply to Hidden]

Yes I know, I’ve had the same problem with doctors telling me they’ll ‘do their own research thank you very much’.

It’s frustrating because their ‘own research’ is outdated and ends with them prescribing something that either doesn’t help or makes the condition worse.

It makes me so mad how ignorant doctors are about our condition.

[Ticki]

I so fully understand your pain and agony. My symptoms have always been my right thigh. It only changed positions when I augmentation getting off of requip, but my suggestion is to get back to that doctor and ask if you can have the tablets ,like I to took the patches and they never accomplished anything for me,but once I got on the tablets, it has changed my whole life, I had to go up to 8 mg which I was told by my specialist was the highest dose and that scared me because then what would I do after that but I decided after a bit to cut the 8 mg into four and lo and behold 4 mg is fine now for me every night, at least try to convince Dr not to do you cold turkey. You are in my prayers hon. It is pure hell there’s no other way of describing it but you are so more worth what you’re going through and the doctor needs to understand that, fight Lady fight for your life.❤️‍🩹.

[Hidden in reply to Ticki]

Dr here won't let you have the mg tablets, only drug addicts are allowed access to them......which I totally do not understand. You can only get mcg Temgesic tablets, which is the same drug...??????, don't get it, it is ridiculous.

[Opie__]

so sorry for your problems, I do acupuncture for neuropathy and it helps but did nothing for RLS. Our daughter is going thru Menopause and had terrible night sweats. She got on hormones and that stopped them completely, she doesn’t have RLS. Hoping you get relief soon

[4inthemorning]

I’m so sorry it’s so hard for you right now, a lot of us on this message board have been there. But after working with the right people, you get to a treatment that will work for you. Everyone’s different with RLS but hopefully you’ve got good medical help. Are you under any doctors care and taking any medication?

[RLSdaily]

I wish you continue to fight and get relief and seek another doctor. I /we feel your agony in one form or another.