How do I find a GP who knows about RLS. I have been back again to my GP as I'm now in server pain all the time which has sent my RLS into overdrive, I'm not sure if I'm in augmentation, she said she would give me an antidepressant to lift my mood!!. I explained that they will make my RLS worse and that if I could just get rid of the constant pain than my mood would lift.
So she said she would give me something to help with pain and help sleep, and when I got them they are amitriptyline. Should I take this or is this going to make matters worse?
I am on 1mg of Ropinirole and have been on this since 2017, had no follow up reviews.
Please if anyone can help, I'm at the end of tolerance with this.
Thank you
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Marymill
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UK doctors are not taught about RLS: where are you in the UK? There are a few doctors and neurologists who know more.
You say in your Bio that your doctor refused to give you a full iron panel. Refer them to NICE guidance which TELLS doctors to measure serum ferritin and to conduct other investigations:
I would add that, in my own experience, vortioxetine (Brintillex) did not make my RLS any worse, but it was excellent at helping with the depression that I only had because I couldn't sleep due to RLS!
That's good to know. Joolsg did report on a very small Turkish trial last year that concluded "we believe that studies should be conducted to investigate the efficacy of vortioxetine in the treatment of RLS".
Welcome to the forum. You will find lots of help, support and understanding here.
Amitriptyline is a tricyclic antidepressant that will make RLS worse. The only safe ones are Wellbutrin and trazodone.
Has your doctor figured out the cause of your pain? What type of pain is it? Severe pain is not normal in RLS nor from ropinirole. Some pain is. If it is neuropathic pain gabapentin is good for that. You need to see a neurologist.
The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.
Since you need to increase your ropinirole and since it is not covering your symptoms you probably are suffering from augmentation, and need to come off it but your severe pain is your most important problem and should be dealt with first. Once that is solved make a new post and we will tell you how to get off the ropinirole and on to gabapentin or pregabalin.
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it since your doctor does not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...
Have you ever had your ferritin checked? If so, what was it? This is the first thing your doctor should have done. 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 INSIST as Chris said for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and 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.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, 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, C, 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.
Tell us where you live and we may be able to give you the name of a doctor.
Thank you for your reply, no they don't know the reason for the pain, just fobbing me off with pills to lighten my mood! My body aces from head to toe, you would think I had had a good kicking, not painful to touch apart from shoulders and neck, but a constant ace which in turn is making the RLS worse. They have suggested I increase my Ropinirole but have been reluctant to do so as any change (Time taken before or with food) makes me sick. I take Vic D and magnesium supplements and also on HRT as I have osteoarthritis in hands and neck, I do not eat carbs or sugars as I started to follow a Keto diet 3 years ago to help with the osteoarthritis, it worked wonders up until last year when this all started. I did ask for a full panel of iron taken but again fobbed off have attached results for what she did take.
The RSL is defiantly now in my upper limbs and it's starting earlier in the evening well before my meds. Just feel so desperate for something to be done and someone who knows what the are talking about. I'm based in Blyth in Northumberland.
Once again thank you so much for your information and help
Dr. Kirstie Anderson is a neurologist who runs the Regional Neurology Sleep Service at the Royal Victoria Infirmary in Newcastle although she is mainly concerned with sleep disorders. You could also message Edengirl58 who saw a neurologist in Newcastle and ask who she saw and Munroist who also saw a neurologist at Newcastle. Let me know who they saw so I can add them to my list of doctors who are knowledgeable about RLS since there are so few.
Your ferritin at 110.9 is barely OK. Some RLS experts feel it should be at least 200. take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better.
Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption.
If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after.
Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.
Just for info: Dr Anderson is aware of augmentation and ICDs, yet as Joolsg points out will still prescribe DAs for 'severe' RLS; will prescribe gabapentin, but has expressed reluctance to prescribe either pregabalin or opioids because of local regional issues with illicit use.
Hi Sue, Sorry it has taken a while to get back to you with names of neurologist in Newcastle UK. Private @ Nufield Dr Kleoland charges £240 & Dr Dorman charges £295. NHS Neurologist based in RVI need referred by your GP Kirsty Anderson & Dr Michael Keogh. There is a 6-8 month waiting list on NHS. I went to see Dr Christopher Murphy @ Alexandra Hospital, Manchester 0161 495 7000 he charges £250 is very nice and understanding regarding the effects of RLS but his first line of treatment is Ropinirole or Rotigotine Patches, but he then went on to say after that would be gabapentin and Pregabalin then Opiates. The GP wanted me to increase the Ropinirole by 1mg to see if it would settle things down or confirm argumentation before they would consider change of medication. So very reluctantly I upped my dose by 1mg to 2mg and my RSL went into over drive, had very little sleep legs & arms jerking and leg cramps, its been a nightmare. I have finally seen a Doctor today who has listened to me and has agreed for me to come off Ropinirole and increase my Gabapentin. She is going to check the best way for withdrawal with the pharmacist, I have also been referred for a small fibre specific Neurophysiological study for nerve damage. At last I feel someone is listening to me and finally doing what I want, so hopefully things can only get better. Thanks you so much for your help and advise. xx
Thank you for the names. I am really surprised at your experience with Dr Christopher Murphy as there are several on this forum who were very pleased with him. That was terrible! Did you see either Dr Kleoland or Dr Dorman If so what was your experience with them? Or are these the ones Edengirl58 and Munroist saw. If so which did each see so I can put their names with them. Who are you seeing now that you are pleased with?
Here is the advice I give for coming off ropinirole and going onto gabapentin:
First off check if you are on the slow release ropinirole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole because the slow releases ones can't be cut.
To come off ropinirole reduce by .25 mg every 2 weeks or so. Ask for a prescription of these if needed. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it
The gabapentin won't be fully effective until you are off ropinirole for several weeks and your symptoms have settled. After you are off ropinirole for several weeks 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 as the peak plasma level is 2 hours. 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 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 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 . According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ."
Thanks for your advise on withdrawal. The other Neurologists I named, I have not seen as the waiting lists to see them was too long, I just done some research to find local Neurologists and rang around hence me going down to Manchester. Edengirl58 recommended Dr Murphy, I can see or have a telephone appointment with Dr Murphy if needed, but my new GP seems very helpful and will help me with the withdrawal. I'm just on regular Ropinirole and just waiting for 0.25mg to come through. Not taking Magnesium now as it did not agree with me. Only on vit D and going to start with oral iron. Thanks again
Dr Rachel Wilkinson - Railway Medical Centre, Blyth, Northumberland UK, she is very helpful and will look into what is best if she does not know, so I am very hopeful
Sue, do you happen to know if NMN (ncbi.nlm.nih.gov/pmc/articl... is bad for RLS? I started taking NMN around when my RLS got noticeably worse, but then stopped taking NMN for a week or two and things didn't get better, so I figured NMN is probably not a culprit and started back again.
Do NOT take Amitriptyline. It's an anti depressant routinely prescribed for nerve pain and it makes RLS 1000% worse. Show your GP the RLS-UK website and under 'medications' it lists meds to avoid.As your GP clearly knows nothing, you will have to research and learn all you can. Start with RLS-UK website, then listen to top RLS expert, Andy Berkowski.
As you've been on Ropinirole for 7 years, it's already highly likely you are experiencing drug-induced worsening ( augmentation). Look at the description on the websites and listen to Andy Berkowski's webcasts.
Edit: I've just read your bio. You are Definitely suffering augmentation.
As you're now 61, it will be a good time to get off Ropinirole. Withdrawal is usually hell and causes falls from exhaustion. Better now than when you're in your 70s.
RLS-UK has the withdrawal schedule under 'useful resources'.
Get normal release Ropinirole in 0.25mg pills and Reduce by 0.25mg every 2 weeks. Ask GP for a low dose opioid to settle withdrawals at each dose reduction. When you are at 0.5mg, start taking pregabalin at night. 75mg to start, then increase by 25mg every few nights up to 100mg. Pregabalin won't help the withdrawals. However it will start to work about 3 weeks after the last dose of Ropinirole.
Also look at the Iron therapy page as you will need full panel iron blood tests and to increase serum ferritin above 200ųg.
Did your GP warn of the very high rates of Impulse Control Disorder? If not, do tell him that hundreds of UK GPs have now been successfully sued for failure to warn, after patients lost £££ to out of character gambling addictions. If it stops them prescribing these drugs, great.
Just for info: IF Marymill is referred to Kirstie Anderson she will prescribe gabapentin, but has expressed reluctance to prescribe either pregabalin or opioids because of issues with illicit use in the NE.
Mmm. I'm not a fan of Kirsty. She still prescribes DAs, believes we have RLS because we're all overweight & is reluctant to prescribe the only meds that help.
Ok, just wondering because my RLS went from very mild to severe when I started HRT. I had no other choice but to stop it even though I also have osteoarthritis and osteoporosis. My increased symptoms actually caused me to start Ropinirole which was a big mistake because I augmented badly. I hope you find peace.
Please do research and tell them what you want. I have been doing that for a long time now. I use a Neupro patch 4mg and Tramadol daily to control severe RLS. Works well. You have to experiment with timing and dosage, but it works.
Welcome to the forum. You will find lots of help, support and understanding here.
I have bad news for you though. You are already suffering from augmentation. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.
Since you are already taking 1 and 1/2 times the maximum neupro for RLS, that meets the definition.
You need to get off it because it will only get worse.
You can do the reduction in one of 2 ways. Using a 1 mg Neupro patch cut it into sixths. The easiest way is to draw lines on it. This will equal the .25 mg reduction since 1 mg of Neupro = 1.5 mg ropinirole,. Or you can switch to ropinirole. Multiply the dose of Neupro you are taking by 1.5 to get the correct amount. Since you can get ropinirole in .25 tablets this is the easier way to reduce.
You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
Ropinirole, Neupro and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. (Pregabalin is more expensive than gabapentin in the US.)
The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. After you are off ropinirole for several weeks increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.
Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. 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. (You don't need to split the doses with pregabalin)
Most of the side effects 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)."
Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.
If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. 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. If your ferritin is less than 100 or your transferrin saturation is less than 20% ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, 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, C, 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.
By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender.
Take Vitamin B1 (thiamine) 200 mg an hour before bedtime. I was taking tramadol for my RLS but recently found B1 and I’m getting off the tramadol. It really helps. Good luck.
Hi Marymilll, I’m so sorry to hear you are having trouble with your GP, few of them know anything about RLS and don’t update their knowledge which is probably decades old. I can help with a very good consultant if you live anywhere near Bath or Manchester. Like many of us we resort to paying £250 for a private consultation Whig a specialist who will diagnose your condition and will write to your GP with a recommendation for the medication you should be taking and how to withdraw from Ropinirole, this will be necessary probably 0.25mg every 2 to 3 weeks don’t move on till condition settles then repeat. Shouldn’t take too long as you’re only on 1mg, Ropinirole is classed as a dopamine agonist which can after a few years make the condition worse. There will be advise on hear from people with a great deal of experience.
Thank you, who is the consultant and what Hospital in Manchester? I am trying to get my GP to refer me to a local Neurologist, so hoping I can move forward, if not I'm considering paying to go private as I'm just about at the end of my tolerance with it all
Hi Marymill, I turned my phone around and lost my reply to you. Don’t know why it happens but if I don’t keep phone vertical it all disappears 🤬
Christopher Murphy, Alexandra Hospital, Mill Lane, Cheadle SK82PX. Appointments phone 0161 495 7000. If you can manage to pay £250 for a private consultation it will get you on track if he then transfers you onto his NHS clinic. Don’t worry about the ethics, you need treatment now not in 9 months time on an NHS referral. I’m afraid we’re on our own and need to do everything we can to beat the system.
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