Hi fellow sufferers, I truly hope some of you are getting some relief from this dreadful, awful condition.
I’m augmented on Pramipexole and my GP is happy to leave me going out of my mind without any support whatsoever, I believe they have zero understanding of RLS. A few years ago I attended the annual RLS AGM and took some leaflets to my GP surgery and asked if they could be left in reception, they refused. They didn’t want to even look at them.
This is the subject of a complaint I have made to the practice pointing out the fact that there are more suicides from people suffering from RLS than any other neurological condition, among other things and I’m sure the answer I’ll receive is to move GP surgeries.
What I would like to ask is what do you do when you get to the stage when it looks like there is nothing that will give any relief? When there has been days without being able to rest (I’m 4 weeks post op from total right hip replacement and without making this a long boring story was the cause of me discharging myself from hospital on the evening following surgery) and the constant jerks and jumps morning, noon and night are really now taking their toll. I’m at the stage where I’m considering applying for a loan in order to see Prof. Chaudhuri at Kings privately.
Any advice would be very welcome. Thank you
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Felixstowe
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Are you familiar with the Mayo Clinic Updated Algorithm on RLS? Have you had your ferritin checked? You say you have tried everything, have you tried gabapentin? Yes - it would be worth it to get a loan so you could see Prof. Chaudhuri at Kings privately. To come off pramipexole reduce by .125 mg every two weeks or so. Take it slowly and wait for the increased symptoms before doing the next reduction. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Hopefully by then you will have seen Prof. Chaudhuri by then. If you haven't tried gabapentin, which is now the first line treatment for RLS, the beginning dose is usually 300 mg gabapentin. Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin.
Thank you for this comprehensive, helpful post Sue, it s much appreciated. My RLS is currently not medically treated but it is getting worse at the moment and I have taken a pic of your post so I can access it easily should I need to.
In the meantime: Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium if deficient, massage including using a massage gun, using a standing desk, listening to music and yoga.
Thank you so much for your very informative reply. I did try Gabapentin previously to no effect but cannot remember the dosage so possibly not high enough dose. Something for me to look into. I also have PMR and stress is a big precursor to flare ups meaning I have to up steroids and that has caused T2 diabetes so am on a low carb diet. I don’t touch alcohol. My GP did check ferritin once but because sleep consultant told him it should be over 50 when having spoken to me said it should be 100. Mine was 53. Because of steroids I’m on Adcal D3.
I’ll certainly look into everything you’ve suggested. 😊
He has stepped back from RLS work and research to concentrate on Parkinson's.He's more knowledgeable than most neurologists about RLS but doesn't prescribe iron infusions or Buprenorphine whereas Prof. Walker does. Prof Chaudhuri's team tried to put me on the Rotigitone patch after I'd augmented on Ropinirole. I was shocked as that goes against the advice of the top experts in the USA .Luckily I'd done my research and knew I'd quickly augment again on the patch so refused.
So, he's more knowledgeable than most neurologists but not the best in my opinion.
I was in a similar situation with roprinerole, un-familiar to restless legs he had me taking 12mg of said tablet and was augmenting like mad because I was on such a high dose....I think the recommended max is 4mg. I am now down to 4mg and take a clomazepam as well. I had to ask gp to refer me to specialist based in Sheffield teaching hospitals. Managed to get my ferritin levels up to 153 at my last blood test. Good luck 🍀
Oh my goodness, it really shows the level of ignorance of this condition and the medications. Well done on getting down to 4mg and getting your ferritin to 153. Good luck on the rest of your journey.
Dr. Bagary is a neurologist and sleep disorder specialist at The Barberry Centre in Birmingham. He is helping me with my very severe RLS with buprenorphine. I am still in the experimental stage with this drug but he is knowledgable and is also willing to discuss iron infusion which will be my next request when I see him again. Good luck with your research and I do hope you get some relief from this horrible condition soon.
Hi Beechie2014 - just to confirm that I also understand the max ropinirole dose to be 4mg per day. I have been on Ropinirole for about 8 years now and after 2 -3 years in I had reached that recommended max of 4mg per day (taken as Requip-Modutab 2mg Pro Rel x 2 per day). When this no longer contained the symptoms my neurologist then prescribed an additional dose of Lyrica (which is Pregablin) and gradually increased that to where I am taking 200mg per day. I think my way forward will be to increase Lyrica as slowly as possible until I reach it's max (600mg per day I believe)
You should also be slowly getting off Pramipexole. Augmentation ( increase in severity of RLS) will continue until you get off Pramipexole.The average dose of pregabalin for RLS is 150mg so 600mg should not be necessary. And it won't help until you get off Pramipexole.
Read SueJohsons reply above about reducing Pramipexole and getting serum ferritin levels up.
Most doctors don't know it either. The pregabalin can 'mask' the worsening RLS symptoms for a while but they usually break through again at some point. Pramipexole over excites the D1 opioid receptors and they start screaming out for their dopamine hit. That's what causes the severe RLS.So removing all dopamine agonists allows the D1 receptors to calm down and repair and that can take weeks or months.
Pregabalin then kicks in and should cover the RLS at the average dose of 150-200mg.
Good luck. You'll notice a vast improvement once off Pramipexole.
Totally sympathise with you. I have investigated ProfChaudhuri and Prof Walker who was very much cheaper than Prof Chaudhuri, he also appeared to have better reviews. I haven’t seen either yet as I have now got a NHS appointment with a Nuerologist. I have reasonable relief at the moment with Gabapentin and Tramadol. Good luck with whatever you choose to do.
I tend to agree with your assessment. There have been a few less than favourable reviews of the good proffesser plus that there is a very long waiting list.
Sounds contradictory, but 8m just relating what I've seen on this site.
I’m so glad you have found something that helps you. Personally I have tried low-dose opioids to no avail 😞also not quite so low dose. If this is inappropriate please delete, I found some completely out of date Fentanyl patches (25mcg/hour) that I had been prescribed for pain and at a completely desperate moment used one and it worked beautifully. Helped with the excruciating hip pain (pre surgery) and no RLS. Unfortunately I only had 4 patches and as 1 patch lasts 3 days I actually had 2 weeks of reduced pain and no RLS. It’s not something I would want to be on permanently, however to have something that would give a few days relief a month would be enough. No chance.
If you're augmenting on Pramipexole, low dose opioids wouldn't help much. Nothing does until you're off the Pramipexole and your D1 receptors have settled down. That takes a few months for most.
I am.so sorry you are suffering. I agree with Sue that you need an opioid to help.You could email Dr.Buchfuhrer and show your GP his advice.This has worked for me.Huge good luck.c
I’m sorry I don’t have any advice but I’m 6wks post op from major back surgery… no one could tell me if this was related to why my RLS symptoms got 50x worse just before surgery so I took a chance and had this much needed surgery told to me by 4 neurosurgeons… it was good at first because I was in so much pain I couldn’t tell anything except I took strong pain pills for 3 wks and they helped me sleep…but I definitely didn’t want to get addicted to those pills so now it’s 6 wks and I’m back on my ropinerole once at bedtime and I can feel it coming back… no sleep is getting me to see what real depression is… one thing is I’m retired (74) so I can sleep during day because for now 🙏it doesn’t kick in until nighttime!! I’m trying to hold it together and some days if I sleep the day before I have a fairly good day but nighttime comes like tonight and so far 1 hrs sleep.. I see my neurosurgeon today but he won’t have any answers because I asked before the surgery!! I think most people think it’s something we could control if we tried harder but we know that is such crap…after I can walk without help and can drive I found this place that supposedly can help… I think because of the media and people like us speaking up maybe after we’re all gone they’ll find a solution?? If I find something that helps I’ll post it but all the things that most of us have tried it’s only a temporary fix or no help at all… hope one of us find something that can work for all of us 🙏
I’m so sorry to hear this, strange but my RLS really took off following spinal fusion surgery, even worse once I had a Spinal Cord Stimulator implanted. Helped with the back pain and sciatica but have had to have it turned down so low because of RLS the benefit really isn’t there anymore. I’m very lucky I’ve never had a problem with becoming dependent on any medication except of course Pramipexole.I wish you the very best and as speedy recovery as possible from your surgery.
You are exactly the sort of person I need to speak to.I started a campaign last August to get RLS taught to doctors in the UK as their complete lack of knowledge and training is causing untold suffering.
The RCGPs refused to consider including RLS in any teaching curricula and said FPs would know how to access and research relevant information.
We know that does not happen and so the negligent treatment continues.
I will be posting soon asking for RLS patients to share their stories of lacknof knowledge and poor treatment from UK doctors.
I'm hoping to get about 50 case histories so we can have a meeting with several MPs at the House Of Commons and try to force education that way.
If interested in being one of the 50, let me know.
To deal with your situation, follow Sue's advice and start reducing Pramipexole now.
Print out the Mayo algorithm and taje it with you to next GP appointment and ask for full panel fasting bloods. Raise your serum ferritin if below 100 by taking ferrous bisglycinate 65mg every other night on an empty stomach.
When you reach the last dose of Pramipexole, you should start replacement meds.
Pregabalin or gabapentin or a low dose opioid.
You can also see Prof Walker at UCL, Queen Sq London. He's actually better than Prof. Chaudhuri in my opinion as he does refer for iron infusions and will prescribe low dose opioids, including Buprenorphine.
Things will get better but you will have to do most of the work and research yourself.
Please also see the Pinned post on the Yellow Card Scheme and report the augmentation symptoms. If we all do this, the medical profession may realise the scale of suffering. If no one reports augmentation then Pramipexole keeps getting prescribed at high doses.
Wow, thank you. I am definitely interested in being one of the 50 if possible. Thank you so much for the information I will certainly try to get an appointment with Prof Walker. I already attend Queen Sq for follow ups re my Spinal Cord Stimulater.Will certainly report on the Yellow Card Scheme. Have gotPramipexole down to 2 a day despite my sleep specialist telling me to up the dose to 4.
Your RLS is probably caused by the spinal damage. Mine is caused by MS scarring in the spinal column.Low dose Buprenorphine has transformed my life and my RLS!
Getting off Pramipexole will be the best thing you ever do. The increase in severity of RLS it causes is unbearable and I'm sick of the total ignorance and negligence.
Prof. Walker seems to know more than most and will help you. His NHS list is over 14 months.
He will advise you to do what Sue suggests. Very slow reduction. You may need low dose opioid to handle the withdrawals and tramadol, Oxycontin or codeine can help. Sounds like your GP won't help but you could ask, pointing out that withdrawals are horrendous.
Medical cannabis can help you sleep for an hour during the withdrawals, so consider getting hold of it now, in advance.
Everyone on here will help you through the withdrawal as most of us have been through it.
I’m so grateful for this advice. I have some Tramadol and Clonazepam for emergencies, again kept from back problem days. I’ve had restless legs since my teens, my mother had it and my siblings get it occasionally. I’m sure you’re right they only got really bad once the spinal surgeries started. Thank you again 😊
Hiya, I’m happy to contribute to the protests 🙋🏼. I also just want to say that I don’t personally tolerate iron bisglycinate or anything else to do with glycine, and I think it’s because it enhances serotonin. I’ve noticed people tend to say it’s better, but it really isn’t for everyone. I got scared and thought all iron is going to be a problem, but this wasn’t the case. Someone else with a connective tissues disorder was using ferritin fumarate so I tried it and have had no problems whatsoever. In fact it improves stool consistency which is great for me. So we’re all different and will have to find the optimal products through trial and error.
That's great. I'll put up a general post soon. We've tried the campaign letters to the RCGP etc and got nowhere so we really need to sit down with interested MPs and see if we can get them to force a change There are just too many people suffering horribly and sadly, many GOs are making that suffering worse through lack of education and training.
Hi I would love to be part of your campaign as I feel that because GPs dont understand they feel embarrassed so just look up on their computer the current prescribing information and thats the depth of their study when you return to GP saying its nots working they get flustered and don't know what to do so you get left suffering also knowing your going to have 1 night of this is so stressful when you have to wait at least a fortnight for another appointment it just about sends you over the edge.
I know they have rules about prescribing addictive meds but if your going to be on it forever does it really matter if you get addicted to it personally I would rather be addicted to the least harmful substance than dangerous opioids.
By the way, studies have shown opioids for RLS are NOT addictive unless there is a previous history of abuse. I know that your case is different as your RLS was caused by opioid withdrawal.
Winkelman's study at Massachussetts General is clearly showing that low dose opioids do not lead to addiction for the over 500 participants and the dose remains steady so we do not become tolerant in the same way that people taking opioids for pain become tolerant, and therefore the dose remains steady over years/ decades for most.
We are DEPENDENT on our meds in the same way that MS and Parkinson's patients are dependent on their meds.
We will need them for life and we need quality of life.
Education, education, education of doctors is essential.
I realise you are in a different situation but do not despair. You need the methadone to control the RLS. It is a neurological disease.
Felixstowe, I am so sorry to hear about the wall your doctor is putting up and the suffering you are going through. Do you have any way of getting kratom? I am in the US so don't know what the situation is in the UK, but it was life-saving for me when I couldn't get any doctors to take my disease seriously.
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