I’m literally crying writing this…following my old gp surgery having made me completely dependent on high doses of morphine, when we moved back nearer family I was referred to the local pain clinic and was put in touch with a local drug and alcohol programme 7 years ago and came off it entirely with the help of Buprenorphine - initially at 8mg a day (don’t start me on the shame of having to initially attend the pharmacy daily to take the medication in front of a pharmacist!) eventually getting down to 0.2mg taken early evening. I wasn’t able to stop this without experiencing severe bouts of nighttime RLS & occasionally I get ‘break through’ events in the middle of the night and severe attacks in the morning (around 5/6 days in the month). I discovered that taking an extra 0.2mg tablet literally stops the symptoms within half an hour. The problem I’ve got is my GP is refusing to acknowledge that Buprenorphine works for me and every month there’s the same wretched telephone call from 63 year old me literally begging for an early prescription and the same patronising attitude from my gp.
My mother suddenly passed away 10 days ago and I’ve had 5 breakthrough events during this time. I’m dreading the phonecall in the morning as I’ve just discovered the surgery have removed the medication from my repeat prescription list.
I’ve emailed them, but am literally at my wits end, does anyone have any tips on how to get through to my gp that Buprenorphine does work? I have a 10mg patch but that does nothing and have recently stopped taking Ropinerole as it made me feel ill, this has been replaced with 300mg Gabapentin twice a day - a medication I stopped taking myself about a year ago by titrating down from 2400mg/day.
Thank you so much for managing to read this far ❤️
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Gail1960
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Im very sorry to hear about your mother. Did you have RLS before starting morphine?If not, then your RLS was initially caused purely as a result of withdrawal from morphine.
Buprenorphine is great to reduce opioid withdrawals.
However, you seem to now have continuing RLS. Opioid withdrawal RLS does usually resolve itself when you have been off ALL opioids and ALL replacement meds for around 6 weeks. My sister developed opioid withdrawal RLS after 3 months on Oxycontin after a serious femur break. She is now totally RLS free.
Did you ever manage to be totally drug free for at least 2 weeks?
You have 2 options.
Try to slowly reduce ALL meds for at least 3 weeks to see if your baseline drug free status means you have no RLS.
Accept that you have mild RLS ( 5 or 6 days a month is classed as mild to moderate) and will need treatment.
The usual treatment for mild to moderate RLS is
1 Full panel, morning, fasting blood tests and raise serum ferritin above 100, preferably 200 via pills or infusions.
2. Eliminate and safely replace all trigger meds ( anti depressants, sedating anti histamines, statins,beta blockers, PPI meds).
3. If 1 & 2 don't work treat with pregabalin/gabapentin.
4. If 3 doesn't work, treat with low dose, long half life opioids. The caveat is that opioids should be given with caution where there is a history of addiction/abuse.
Your GP has followed the UK NICE guidance and prescribed 2400mg gabapentin. This should be taken at night only, in split 600mg doses. So 4 x 600mg 2 hour's apart in the evening.
Did gabapentin not help at all?
In the UK, most GPs will not prescribe Buprenorphine in pill form for RLS unless a neurologist or specialist confirms it is suitable.
You seem to have tried gabapentin, then stopped.
You also were on Ropinirole and stopped.
How long were you on Ropinirole and what dose?Did you take gabapentin at the same time?
Exactly what medications are you currently taking, what dose and what time?
Buprenorphine in pill form is usually reserved for severe, refractory RLS. Where the RLS happens every day and night for several hours and all other meds and iron infusions have failed. I suspect your GP wants to make sure you have fully tried the gabapentin route for at least 3 months.
However, your GP has you on the 10mcg Buprenorphine patch already. Did he put you on this as well as the Ropinirole and gabapentin for RLS? Or was this to get you off the morphine that the GPs prescribed?
I just want to find out exactly which drugs have been given and for what reason. Then, we might be able to come up with guidance/solutions.
In the meantime, stress does trigger worsening RLS. Yoga stretching and leg squats can really help to reduce severity of an attack. Massage with magnesium oil or cream also helps.
Hi Jools, thank you so much for your reply, I’ve replied to Sue too which gives a more in depth picture of my RLS.
Having finally come down from 8mg bup to 0.2mg in the morning, I found I was suffering from severe attacks of RLS in the evening so switched to taking it in the evening and that mostly controls the symptoms. If I forget to take the bup it is guaranteed that I’ll start to get symptoms around 10pm and one tablet will stop it within 20 mins. My problem is the ‘breakthrough’ symptoms that I’m experiencing around 5-9am and these are again stopped almost immediately by a 0.2mg bup sublingual.
I’m on a statin but stopped it for 2 months to see if it helped with my arthritis, it didn’t and I still had daytime RLS. I’m on antidepressants but have been on these for years with no side effects. As I said to Sue, my daytime symptoms started following major spinal surgery 2 years ago, damage was done to my spinal cord by a large bridging osteophyte and vertebrae C6 & discs above and below were removed in a 7 hour op and replaced with a titanium cage and a plate. I’ve been left with peripheral neuropathy, balance problems, loss of fine motor skills, vertigo amongst other symptoms. Exercise isn’t an option and I can’t bathe unaided, fibro means I can’t touch my legs most days, even leggings are too much to bear some days.
I’ve been on the patch for 2 years, initially 5mcg but increased to 10 when I stopped taking Tramadol. The patch is entirely separate to morphine withdrawal programme which I completed 7 years ago.
I’m currently taking in the morning -
300mg Gabapentin
500mg Naproxen
1000mg Co-codamol when pain is bad
20mg Omeprazole
20mg Citalopram & 15mg Mirtazapine
5mg Diazepam
5mg Indapamide
In the evening I’m taking -
30mg Mirtazapine
20mg Atorvastatin
300mg Gabapentin
0.2mg Buprenorphine
In addition to the above I take occasional 2.5mg Bisoprolol when my tachycardia kicks off but I can go weeks without taking one.
I’m going to arrange for an urgent blood test to recheck my iron levels but everything was fine 2 weeks ago.
Thank you again for taking the time to reply, love Gail x
The anti depressants, the statin and the omeprazole are all trigger meds for RLS. The anti depressants may well have started your RLS when you first took them. Two anti depressants that are RLS safe are trazodone and wellbutrin. You can discuss switching to trazodone and tapering off Mirtazapine and citalopram. If you honestly feel they are not the original cause of your RLS and that they don't make it worse, then you may be able to control the RLS by taking the 0.2mg buprenorphine.
Does gaviscon help your acid stomach? Because that is RLS safe. You could consider switching from omperazole.
I don't think iron will help your RLS at all because it's clearly linked to spinal cord damage. I strongly believe there are several causes of RLS. Low brain iron and poor dopamine receptors cause the majority of cases, and iron infusions will therefore improve RLS caused by this.
Spinal cord damage is helped better by opioids.
If 0.2mg buprenorphine instantly resolves the RLS then it makes sense for your GP to agree to prescribe 0.2mg every night. That way, you won't get the breakthrough/withdrawal attacks. I suggest you keep a diary and write down exactly when you experience the RLS and for how long and describe how it makes you feel. 0.2mg is a very small dose and there are only a few companies that make the 0.2mg pills.
If your GP refuses to consider a regular 0.2mg pill of buprenorphine every night, you will have to see a specialist, either at a pain clinic, a sleep clinic or a neurologist. There are a few who are aware of the effectiveness of methadone and buprenorphine for RLS and they would look at all the other meds you are taking for your spinal cord damage.
It doesn't make sense to me that your GP allows a 10mcg patch but won't agree to such a small additional amount of buprenorphine pills each evening, especially when you say it stops the RLS. The average dose of buprenorphine for RLS is 1mg to 1.5mg.
If it's because they are concerned about your previous issues getting off the high dose of morphine, you have shown you managed to get off the morphine and you got off ropinirole and 1200mg gabapentin. So you are trying to keep your medications at the lowest dose to control your many health issues.
There are a few good neurologists who might be willing to keep you on the 10mcg patch AND prescibe 0.2mg pills of buprenorphine. Most will do phone consultations. The NHS waiting list is very long, but you could see them privately within a few months.
Gaviscon contains aspartame, which is made from phenylalanine (a dopamine precursor). That can trigger more stomach pain in people with GI issues such as IBS, as well as an increase in RLS in some people. I find that only Rennie is safe. Sugar isn’t great either but it’s a small amount.
It’s a very strange product, you can barely see the non-active ingredients anywhere unless you look for them. Why they add ingredients that cause stomach problems for so many is a mystery… even peppermint can aggravate indigestion! Maybe it’s a way of ensuring people keep using it… I don’t know. I don’t tolerate anything with sweetener.
Omeprazole is a PPI and can interfere with the absorption of iron and magnesium and RLS-UK says most PPIs make RLS worse.
Citalopram and Mirtazapine both make RLS worse. The only 2 antidepressants that are are for RLS are wellbutrin and trazodone. Trazodone also treats anxiety and insomnia. Wellbutrin can be hard to get in the UK.
Indapamide is a diuretic and unfortunately all diuretics make RLS worse.
Atorvastatin is a statin and makes RLS worse. Nexlizet (Nustendi (UK) is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) - reduces cholesterol although It doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS and then there is Triglide which seems safe. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.
I interpret your 5 to 6 days a month as being in the mornings and you have RLS at night unless you take your medicine, so your RLS is not mild to moderate.
Since you haven't completely withdrawn from opioids, I don't feel your RLS is caused by that. The only study I found was for an abrupt withdrawal from opioids. sleepmedres.org/journal/vie... The other studies were for people who had RLS at the beginning of withdrawal and their symptoms were increased during withdrawal. so I do believe you have RLS.
I am surprised the patch doesn't work. You could temporarily try using 2 patches until you get he pill situation straightened out. You may need to ask for a referral to a neurologist. The .2 mg you were taking is a low amount. According to the Mayo Clinic Updated Algorithm on RLS which is the bible on RLS the usual starting dose is .5 mg to 1 mg and the usual effective dose is .5 mg to 6 mg. You might want to print out the appropriate section from the Algorithm to show to your doctor or the neurologist if you see one at Https://mayoclinicproceedings.org/a...
You say you recently stopped taking ropinirole. If you stopped cold turkey instead of weaning down slowly, that can also lead to more symptoms. And gabapentin doesn't help until you have been off it for a few weeks and longer if you stopped cold turkey and your symptoms have settled which is why 2400 mg didn't help if you were on ropinirole then.
As Joolsg said you need to have your ferritin checked .Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
Meanwhile 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, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, 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, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
Hi Sue, thanks so much for your reply and I’ll reply to Jools in a min.
I’ve had mild RLS for years but it was manageable as I only got it fairly infrequently. You’re right about my current RLS, if I don’t take the 0.2mg bup around 17.30 then it is guaranteed to start every night around 10.30pm. Most days I’m completely free of symptoms provided I take the medication. I have no idea why some mornings are so awful, it’s not every week that I get it but frequently happens around 5/6 times a month. Sometimes it starts about 5am other times it’s nearer 9am and it is pretty horrendous, I’ve tried magnesium cream, I can’t do massage as I’ve got fibro and often can’t bear clothing touching my legs let alone massaging them. I can’t bathe or shower unaided following fairly major spinal surgery, my RLS has been markedly worse since the surgery, prior to this I had no symptoms during the day at all, the morning attacks have only started since having C6 and discs above and below removed and replaced with a titanium cage and a plate. There was some lasting damage done to my spinal cord and I have peripheral neuropathy, sciatica, cervicogenic headache, vertigo and loss of balance and fine motor skills. I can’t exercise as I have to use a rollator indoors to stop me falling over although I have been trying some seated exercises, I’ve also tried CBD with no effect on the frequency of attacks.
I stopped Gabapentin about 2 years ago over a period of several weeks so was on it when I started the opioid programme with my local drug and alcohol service. At that time I stopped the morphine on a Sunday and started the bup on the Monday. By Tuesday I was incapacitated so much so that my husband and sister had to carry me into the pharmacy in the pj’s, Ugg boots & a blanket but I gradually improved over the following days and weeks. I wasn’t taking Gabapentin whilst on Ropinerole but am back on it as an alternative at the suggestion of my gp with a dose of 600mg a day split into two (as was the higher dose of 2400mg).
I had blood tests in hospital recently and iron levels and Vit D were all within normal range. I’m not taking any OTC meds or vitamins, but am currently taking 500mg naproxen twice a day as suggested by the doctor and my gp when I was dragged back into hospital by ambulance 2 weeks ago as my lower back completely gave up the ghost. I’m wondering if my symptoms are somehow linked to my spinal cord damage, my legs feel peculiar most of the time. I’ve got a couple of extra bup patches here, I’ll try a week of 2 and see if that helps and I’ll ask my surgery to repeat the iron level bloods as a matter of urgency so I can have an accurate reading of what mine are.
Yes it is possible that your symptoms are linked to your spinal damage.
Your doctor should have slowly weaned you off the morphine rather than stopping it suddenly.
Ask what your ferritin was as what is normal for others is not normal for those of us with RLS.
The gabapentin is normally taken 1-2 hours before bedtime as the peak plasma level is 2 hours. You don't need to divide a 600 mg dose but If you later take more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you later take more than 1200 mg, take the extra 6 hours before bedtime. If you eventually need more than 1800 mg you should switch to pregabalin as the doses don't need to be divided and you can switch directly by dividing the gabapentin dose by 6. They are basically the same drug. Most of the side effects of gabapentin or pregabalin 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. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
However if you can get the buprenorphine pills you probably won't need the gabapentin at all but thought I would tell you about it in case you can't get it.
So sorry to hear this. Do hope you get the support you need. I've never been prescribed any meds for RLS in the UK so have had to use herbal remedies....at 76 I've learnt to live with it. Not easy when people have no idea what it's like. Let us know how you get on....
Hi Gail, I’m so sorry for your loss, firstly. Secondly, I simply cannot understand the GP’s attitude towards you. It’s just outrageous how you are being treated! Can you talk to anyone else at the surgery? I know it’s hard these days but can you change surgery? I’m so sorry you’re being put through this. I go through a similar dread every month when I put my oramorph repeat in. X
for reference I was on 75 mg morphine 15mgx5-per day for about 8 -10 years. Still have stenosis- and the military opted for surgery but I said no I’d rather just take morphine.They allowed it for a while- Well then the DEA and all the well meaning people decided people like me didn’t really need an opioid. I haven’t missed a day of work my adult life, so there’s that. And I have RLS off an on since early adulthood- didn’t even know what it was- thought it was from doing too many laps in the pool. Back to a few years ago- they made everyone who wasn’t dying into addicts that have to be taken off opioids, so I did. Tried many other modalities to help. Cessation off psychoactive substances does bring all kind of fun stuff up to the surface, doesn’t it?
My heart breaks for you- maybe printing out some of the pages here and bringing them with you. So these unaffected healthcare workers can read for themselves the sincerity the rest of us already know.
It can be hard for certain people to understand- so it’s just an idea.
I totally self medicated with nightly glasses of wine- but that messed with my blood pressure. So now I’m off all prescriptions and alcohol and addictive medicines except clonidine and Lisinopril for BP.
Speaking of self medicated-
They say Kratom in large amounts is bad for you ( and addictive too- might be it has an alkaloid in it that fits into the same lock as opioids do )too- so to quell the busy legs that have a mind of their own at night I take a spoonful ( like a 10th of an ounce) and it works for me- that other gaba stuff gave me nightmares. Kratom is a crushed powder from a coffee plant and is very bitter, might also explain it’s addictive nature?
Anyway I’ll be saying a little prayer for you from across the pond- as I know people can be mean- We all here are pulling for you- cheers
I’m so sorry for you. I’m RLS and pain free with 0,5 Bup. Try to live super healthy. Search everything from Medical Medium. After a few months you could lower slowely a lot of medication. (I think)
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