Good morning, I am a long-time sufferer of Fibromyalgia/CFS/RLS, these being my main areas of health concerns, being initially diagnosed way back in 1990. I believe I am suffering severely with my RLS and have been suffering with Augmentation unbeknown to me for a few years now, having been on 4 mg of Ropinirole XL (Requip) for well over 30 years now. I recently contacted the RLS.ORG.UK and they confirmed this, also stating that my dose was far too much. For 6 years or more, I have been trying to raise my Ferritin Level which was 22 back in 2018, with Sea Kelp as a form of Iron tablets that upset my system. I've had to fight once a year just to get this test done, my last ferritin level was only 37 last October, but I realize I should have been requesting a full iron panel and all of this should have been carried out after fasting, which mone has never been carried out this way. My fatigue level is also through the roof, since contracting COVID last year, but my RLS is affecting me from the top of my head to the tips of my toes, I saw a GP last November, with evidence that I thought I was in augmentation being very low and desperate for some help, I took along some evidence and medications that are now recommended and she virtually dismissed me, and just wasn't interested in looking or helping me. Without boring you all with my full story, I did report her and have just spoken on the telephone with her today and she sounds more willing to work with me now, apparently, the Pain Clinic has rejected my referral here in Plymouth. Would anyone know of any Neurologist in the Southwest of England, preferably in Plymouth, that specializes in RLS and Augmentation, I am willing to travel to find the right specialist consultant, also I enquired at my Haematology Appointment for my (CLL) in February as to whether they would consider some iron infusions for my RLS and was informed that this is not something they carry out! I understand that there is only 4 hospitals in the UK that currently offer this treatment, and one is in Cornwall, I'm desperate as my sleep deprivation is also suffering so badly due to this too., so any help and advice would be appreciated.
RLS, Augmentation and Finding a Neuro... - Restless Legs Syn...
RLS, Augmentation and Finding a Neurologist in the SW of England
Welcome to the forum. You will find lots of help, support and understanding here.
Since you can't cut Requip XL you need to switch to regular ropinirole. And to do so you need twice the dose or 4 mg which is the recommended maximum dose. You will probably need to spread out taking these during the day and evening since the XL one released its ingredients over a 24 hour period.
To come off the regular ropinirole, reduce by .25 mg every 2 weeks or so. 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 especially at the beginning. 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 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.
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 (pramipexole) although it won't be fully effective until you are off it for several weeks. After you are off ropinirole (pramipexole) 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)."
I can't help you on finding a new doctor or getting an iron infusion as I am in the US but others will be along to help you on that. And yes with that low a ferritin you will need an iron infusion. There is an iron clinic in London that will give you an iron infusion privately which will cost about £800. It is The Iron Clinic on Harley Street (contact Professor Toby Richards) . You have your blood tests sent to them. Also Royal Cornwall Hospital in Truro (SW England) has given infusions for RLS
Meanwhile If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness.of the blood thinners and of the iron so check with your doctor. Otherwise take two tablets of 325 mg of ferrous sulfate or 75 mg to 100 mg 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 or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.
When you have your next test for ferritin 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
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, 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.
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...
Message Dotmowatee who lives in Plymouth as she has a doctor that may be knowledgeable about RLS and will prescribe opioids.
Thank you Sue, there is lot to take in, I'm unable to take pregabalin and gabapentin as had bad reactions to pregabalin after being on them for 3 or 4 years previuosly for my Fibromyalgia and Chronic Fatigue Syndrome, at that time I was also taking Ropinerole XL 4mg and have been since 1990, and already take co-codamol twice a day. I eill have a good read today as I have already been trying to come off my Ropinerole with a very bad flare, last night I slept around 1hr only. I'm just going to see my Chiropractioner this morning and going for a chat at our local Hyperbaric Oxygen Chamber to see if this can help in more ways than just my RLS.
Was it just the pregabalin you had a bad reaction to? What was it? It would be very rare to have any after 3 or 4 years.
More information. Doctor Wayne Thomas in Plymouth is a haematologist at University Hospitals and has arranged iron infusion and is very knowledgeable about RLS - recommended by Dotmowatee.
Also gabapentin or pregabalin will help with your fibromyalgia too.
This in interesting to know, as I see haematologist in Plymouth for my CLL, and asked the question on my last visit in February, only to be told this isn't something they do here in Plymouth, it's even written in my letter from them, so I will definitely checkout this for sure. Thanks again
As you have IBS and side effects from iron tablets, you are definitely a candidate for an iron infusion.If you can get a referral to the Royal Cornwall in Truro, do so. They are familiar with low iron causing RLS, and your IBS will prevent oral iron absorption. Or, as SueJohnson advises, ask to see Dr Wayne Thomas in Plymouth.
Alternatively, you can get an iron infusion privately in London at the Iron Clinic in Harley Street. You just send them your results. It costs about £800.
It's good to hear your GP is now listening to you. She's totally wrong about augmentation. If you've been on Dopamine Agonists for 30 years, you will DEFINITELY be suffering drug induced worsening.
You need to slowly reduce the Ropinirole. First ask for the equivalent dose of normal release Ropinirole, and some 0.25mg pills. Reduce by 0.25mg every 2 weeks.
Start pregabalin or gabapentin 4 weeks before your last dose of Ropinirole..It won't settle your RLS OR reduce withdrawal symptoms. They start to work around 4 weeks after you stop Ropinirole completely.
You will probably need a low dose opioid to settle the increased RLS at each dose drop. So find a good neurologist who will direct your GP in what to prescribe. Hopefully Dr Wayne Thomas can ask the GP to prescribe a low dose opioid to get you through withdrawal.
As you've been on dopamine agonists for 30 years, it's highly likely you will have experienced damage to your dopamine receptors. This can result in pregabalin or gabapentin being ineffective, and your RLS is then classed as Refractory. You will then need a long half life, low dose opioid like methadone or Buprenorphine.
So, ask to see Dr Thomas and discuss your options fully, asking him if he'll prescribe opioids if the iron infusion and pregabalin/gabapentin do not work.
Thank you for all of this, alot to take in at this stage. I think I've started reducing to drastically, so need to rethink my approach, as I've been trying to take 1, 4mg xl tablet every other night, ladt night was crazy.
That is too much and too fast. You've been on brain changing chemicals for 30 years.You will need to take at least 6 months to reduce down slowly.
Reduce by 0.25mg every 2 weeks and slow down further if it's too difficult.
Go back to what you were taking, arrange a 20 minute appointment with your GP. Tell her you need to withdraw from Ropinirole because you ARE suffering augmentation.
Ask for normal release Ropinirole in 3x1mg pills and 4 x 0.25mg pills.
Ask her to refer you URGENTLY to Dr Wayne Thomas at Plymouth.
Explain that withdrawal is more difficult than getting off heroin and you will need an iron infusion from Dr Thomas AND low dose opioids to help you settle the withdrawals at each dose reduction.
If your GP refuses, ask her to look up videos of people going through dopamine agonist withdrawal. It is horrendously difficult.
One other question, have you experienced Impulse Control Disorder in the last 30 years? Ropinirole causes gambling, impulse spending. People have lost tens of thousands on these drugs. Hundreds of successful legal cases have been brought against doctors.
You will need to be prescribed a long half life, low dose opioid when off Ropinirole. I see that gabapentin and pregabalin did not agree with you when you tried them before.
If your GP or Dr Thomas are able to do so, you can be prescribed Buprenorphine or methadone. Both are highly effective for RLS and DO NOT cause addiction or tolerance. Buprenorphine has been used by several people on here to help get them off Ropinirole, and it reduces the withdrawal symptoms enormously and is therefore safer for older patients as it will avoid exhaustion and falls.
Don't do it every other night, when you reduce do it every night.
Hi 👋 I am interested to read that you talk of IBS and iron absorption.
I understand that if you have IBD , celiac etc it could be a problem but I've never heard of IBS causing any issues with this. Can you elaborate? 🤔
Thanks
Jen
healthline.com/health/ibs/i...
irritablebowelsyndrome.net/...
ncbi.nlm.nih.gov/pmc/articl...
If you have IBS, it can cause poor absorption of iron in the gut.
It's better to raise levels via iron infusion than iron pills as the pills may further exacerbate the IBS.
ahh, if only you could get an infusion!! Thanks for the info, I never considered this before. I knew about Celiac and Iron absorption as my mum has had issues over the years with her levels. Very good information thank you again 
There are around 3 haematology departments in the UK that will do an iron infusion for RLS. St George's in Tooting, the Royal Cornwall in Truro and Salford hospital. If you can afford it, Professor Toby Richards will arrange a private iron infusion in Harley Street or Manchester at the Iron Clinic. It costs around £800.
Hi lovely! Bit far for me, I live in the land down under!! We have lived in Canberra Australia for the last 45 years and have just sold up and are building in Cairns far north QLD!! We leave to hit the road for a few months in our caravan tomorrow! Nobody here would consider an iron infusion.. Makes too much sense!! I have started to hit the red meat big time, steaks steaks steaks!! and I'm searching for a store bought Pate FODMAP friendly until we settle in our new home, then I can make my own. Yum!!
🤣 Sorry Jennifer. Good luck with the house build! That is stressful. Enjoy the nomadic life and I hope it all goes smoothly.
I was wrong about the amount of regular ropinirole you need. You only need 4 mg. I have changed my answer.
That's okay, I will take all this in later today and try and get a hold of my GP, and Dr Wayne Thomas I think!
Great advice as usual from Sue and Joolsg! Two things you could consider: One is there is a Ferrous Bisglycinate Chelate patch (from Patch MD). This form of Iron supplement does not cause constipation as other forms can. I do not know of anyone who has used it, but it does bypass the gastro system being transdermal delivery.
Also, I have been using NAC (N-Acetyl Cysteine) to assuage glutamate in favor GABA (both neurotransmitters). It is available over the counter well tolerated and could help. But your big player is that devil of a drug ropinirole. Good luck with getting off it - better days are ahead!
patchmd.com/iron-plus-topic...
healthline.com/nutrition/na...
I wonder how effective the patch is?? I will give it a try. I suffer IBS and Chronic constipation so it may be a good thing. Movicol is a wonderful thing though, it keeps you going if you know what I mean! Yep Ropinirole is a devil for sure. I was told to stop cold turkey, we can all guess how that went!!! I will get there, just take my time and follow Sue and Joolsg fantastic advice. They have both been a life saver for me trying to navigate RLS. I was on an Aus Site which was helpful but not like this one. So much more knowledge here. Life savers.
For constipation generally, try Triphala (a 3 herb blend) - works wonders - zero side effects.
Hi, I just wish to thank you all for all your knowledge and advice given to me to date. I have spoken with Dr Wayne Thomas's secretary this week and have just written a letter to my GP explaining most of the above advice and requesting an urgent referral to him at Derriford Hospital. After much extensive research there does not appear to be any specialist neurologist with an up-to-date understanding of RLS this side of London. So I really appreciate the comments that suggested Dr Wayne Thomas right here in Plymouth where I live. I think it was Sue Johnson who suggested I put my list of medication on here along with any supplements I am currently taking, so the list is quite expensive as I have other chronic health issues too.
Medication
Paracetamol 500mg, 2 x 2 tablets daily for Fibromyalgia & Osteo-Arthritis taking 2 at Breakfast, and lunchtime.
Co-Codamol 30/500mg 2 x 2 tablets daily for Fibromyalgia & Osteo-Arthritis 2 at Tea-time
2 at Night.
Bisoprolol Fumarate 2.5mg, 1 tablet daily for Chest Pain & Facial Numbness 1 taken at Breakfast time.
Ropinerole 4mg xl (Requip) 1 x 1 tablet for Restless Leg Syndrome 1 taken at Night.
Atorvastatin 20mg 1 x 1 daily for Cholesterol, 1 at Night.
Esomeprazole 40mg, 1 x 1 daily for, Gastro-Resistant 1 at Night.
Laxido Orange Flavour Sachet, when required for IBS, 1 Breakfast & Nigh time
(presently stopped while drinking Kefir)
Beconase Aqueous 2 x 2 sprays for Annual Rynitis, Morning/Night.
Loperamide Diarrhea occasionally when needed.
Gaviscon when required for Acid Reflux.
Alternative Meds and Supplements
Iron 10mg Sachet, for RLS, Muscle Cramps, and Hormones, best taken with Vit C, every other day as advised on the Facebook Forum.
In 2022 my recorded ferritin reading was 73, yet in October 2023 my ferritin reading is now down to 37, In October 2023, I Introduced Iron Supplements after 5 years of taking Sea Kelp 2000mg, to help raise my ferritin levels, naturally.
Vitamin C with Rosehip, Take with Iron Supplement, 1 at night taken with IRON
Vit B12 is taken for Energy, I tablet under the tongue with a meal and a glass of water.
Vit D3 & K2 (MK-7) 4000 iu & 100 iu K2, i tablet in the morning.
5-HTP 50mg taken to help with my Mood, 1 at Night.
Magnesium Citrate 300mg, currently taking one tablet daily.
Neuro Night Complex Nu U includes Vit D, B12, Biotin, Magnesium, Lavender, Lemon Balm, Montgomery Cherry, and Chamomile, taken for Sleep 1 Capsule at Teatime.
L – Tyrosine 500mg Neurotransmitter Support, for my Mood & Sleep 1 – 3 Capsules in between meals.
Pure Magnesium Chloride Oil RLS Topical
Magnesium Sleep RLS Topical
Water Kefir Gut Health 200ml a day on an empty stomach.
I have recently started taking liposomal Iron which contains 200mg of Iron Bisglycinate and is flavored with pomegranate from a company called Zooki, this can be drunk straight from the sachet or mixed with a glass of water or other drink, due to tummy issues, I now take this in a glass of water every other day. As some of my other tablet forms of alternative meds are running out I am also replacing them with the Zooki liquid alternatives in supplements, Vitamin B12, 2500mcg of Methylcobalamin, Vitamin C 1000mg of L-Ascorbic Acid, Vitamin D, 3000u Lichen & 100ug MK-7, Magnesium, 200mg Magnesium as MG-Bisglycinate. All of the above supplements are more expensive, but when in dire need of help with your chronic health issues, it's worth a try.
I also recently purchased an earthing grounding sheet and a pair of leg wraps that vibrate, heat, and massage the calves.
I'm a 68-year-old woman, having suffered from Fibromyalgia/CFS/RLS/ IBS and associated health issues, sleep deprivation or too much sleep for over 30 years now, adding to this the CLL discovery in 2017 along with pre-diabetics/ diabetic/pre-diabetic, I'm at my wits end trying to find products to help me with my daily battles. Since Christmas 2022, I suffered a sinusitis infection and, stress then caught COVID in March and I’ve not picked up at all since. 9 months ago I started back seeing my functional health Chiropractioner, at Saltash, 3 times a week initially for 2 months, to try and help restore my central nervous system to help my body restore itself, I now see him just once a week when or if I’m fit enough to attend.
In a desperate attempt to find an alternative treatment or supplement, I have recently been carrying out some research into Hyperbaric Oxygen Chambers and their use in many illnesses including cancer. So much so, I booked myself into the Plymouth Hyperbaric Oxygen Centre in Plymouth last Monday afternoon, and underwent some infra-red treatment to warm up the blood vessels, and a 1hr session in one of their chambers, which certainly worked in opening up all the sinus channels as my nose never stopped dripping for 2 whole days after this. Unfortunately due to my lack of mobility issues and being unable to bend my left knee at any time, I am unable to continue in Plymouth with this treatment as they do not have a chamber with disability access.
But not one to give up, I am arranging some hyperbaric oxygen sessions at Exeter, 3 or 4 days a week for 4 – 6 weeks, which I hope I will be able to do, due to my fatigue levels being through the roof all the time. I will keep you posted on the success of this oxygen treatment plan, which will if work be kept up with weekly or fortnightly management sessions.
I believe my Ferritin level was up to 73 in 2022 and had taken 6 years to rise to this level, while I opted to take a high dose of sea kelp, My latest Ferritin level in October 2023 has dropped back to 37, which makes me understand why the RLS appears to be getting worse again and I feel that the Ropinerole xl 4mg slow release prescription drug could be causing Augmentation once again. I did request my Ferritin levels to be checked in my annual blood back in July, but this request was not followed through.
My Central Nervous System has been in total overdrive, causing my RLS and IBS to flare up so badly, I thought I might be experiencing (Augmentation) from the Ropinerole as everything appears to have a knock-on effect with each other. Due to this my sleep pattern is very much disturbed with 3 or 4 nights every week, being disturbed until 2 – 4 am nightly, with me climbing the walls.
So I continue to treat myself with various supplements and alternative treatments, hoping to find something that will help me get through each day gain some quality time, and start enjoying life once again, recently purchased an earthing grounding sheet and a pair of vibrating leg wraps with heat, clutching at straws to hopefully find something to help ease the distress caused through lack of sleep and continuous pain from the RLS, night after night, day after day!
My day-to-day activities amount to waking, getting breakfast, and crashing out completely for the day, if I do exert myself, I suffer for it afterward.
This is some of what I wrote to my GP in my attachment to my letter today
WHAT DO I NEED HELP WITH
1. To be listened to and taken seriously and helped with bringing my sleep and central nervous system back to optimal health.
2. I believe if we can settle down the central nervous system, get a good night of sleep each day build up the Ferritin levels, and find out why my body is unable to hold on to a recommended Ferritin level of 100 +, this would help the RLS and IBS to relax more, which in turn would help settle down the fatigue levels too.
3. Urgently required is Fasting overnight with an early morning fasting blood test (repeated regularly as per RLS guidelines.
a. Full Iron Panel
b. Ferritin Level
c. Hemoglobin
4. Following advice given by the RLS. Org. UK and healthunlocked.com advice on the attached sheet for AUGMENTATION below.
5. Referral to the Consultant Dr. Wayne Thomas (Haematologist at Derriford Hospital) with an active interest in RLS and IV INFUSION of INJECTAFER., this is to be carried out, once we have all blood test results above. I have spoken with Dr. Thomas’s secretary and depending on how my referral letter is worded and requested will determine whether I am fast-tracked or awaiting general referral which is anything up to 20 weeks at present, unfortunately, Dr Thomas does not run any private clinics. I have taken this advice from other sufferers and the RLS.Org.UK and healthunlocked.com. I am unable to find any Neurologist this side of London who specializes in RLS. My RLS has been through the roof for several months now, I hope to be fast-tracked! Asking your GP to refer you URGENTLY to Dr Wayne Thomas at Plymouth.
6. I will need HELP to come off and down from the Ropinerole XL 4mgs (Requip) I am led to believe through the above organizations that this has to be carried out under supervision and very carefully as withdrawal can be worse than coming off heroin.
7. The suggested dosage of Ropinirole needed to be reduced slowly to initially request for the equivalent dose of normal release Ropinirole, 3x1mg pills, and 4 x 0.25mg pills. Reducing by 0.25mg every 2 weeks and only reducing down further when RLS is settled, approx 6 months in total.
8. Also request that the GP prescribes a low-dose opioid to get me through withdrawal stages, especially since I am unable to take Gabapentin or Pregabalin.
9. As I've been on dopamine agonists for over 30 years, it's highly likely that I will have experienced damage to my dopamine receptors. This could result in pregabalin or gabapentin being effective, if I was able to withstand these drugs, since I’m not my RLS would then be classed as Refractory. It is possible that I would then need a long half-life, low-dose opioids like methadone or Buprenorphine. This is something to talk to Dr Thomas about to discuss my options fully, asking him if he'll prescribe opioids if the iron infusion doesn’t work.
( If your GP or Dr Thomas can do so, you can be prescribed Buprenorphine or methadone. Both are highly effective for RLS and DO NOT cause addiction or tolerance. Buprenorphine has been used by several people on here to help get them off Ropinirole, and it reduces the withdrawal symptoms enormously and is, therefore, safer for older patients as it will avoid exhaustion and falls)
Hopefully, I have interpreted your messages and comments correctly, I now await to hear from my GP and the initial blood test as requested, then for my referral to Dr Wayne Thomas to be taken seriously.
I look forward to updating you with any progress good or bad, and with a health check-in when I complete some or all of my journey with the hyperbaric oxygen therapy, I would also appreciate it if you have any feedback on the latter oxygen therapy, especially if you have tried it for any reason and how you reacted to it!
Many thanks Denise
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