my RLS has got considerably worse and I’m at my maximum dosage.
I called for an appointment with my GP and initially she said it did sound like I had RLS.
Whilst on the phone she was googling it. She seemed to think iron wouldn’t help as I’m not anemic. I’m going to buy iron supplements anyway and paracetamol and codeine tablets as it’s all getting too much.
She’s referring me to a neurologist but that’ll take months.
I feel so disappointed. She apologised for not knowing much about it.
I don’t know where to turn.
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Louless9
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Your doctor as you found out is very ignorant as you discovered. If you are in the US, change doctors. If you are in the UK you might want to consider going private. That is unless you can get your doctor to read the Mayo Clinic Updated Algorithm on RLS and is willing to follow it. If you are having increased symptoms you are suffering from augmentation and need to come off the pramipexole. Pramipexole and other dopamine agonists like ropinirole are no longer the first-line treatment for RLS, gabapentin or pregabalin is. 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. Also have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. 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. To come off pramipexole, reduce by .125 mg (.088 if you are in the UK) every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. 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. But in the long run, you will be glad you came off it. On the gabapentin or pregabalin, beginning dose is usually 300 mg gabapentin (75 mg pregabalin). (Pregabalin is more expensive than gabapentin in the US.) 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 (25 mg pregabalin) 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. (You don't need to divide the doses on pregabalin) 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin) daily." If you take magnesium take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of it and if you take calcium don't take it within 2 hours. 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...
On the iron take 325 mg of ferrous sulfate or 25 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 live in the US ferrous sulfate is cheaper and for most people does not cause constipation but iron bisglycinate is much less likely to. Do get tested because if your ferritin is below 100 an iron infusion is indicated since bringing your ferritin up to at least 100 will help with your augmentation. If you can't get an infusion than take 2 iron tablets every day at the same time so it is at least 24 hours apart. Don't do this until you are tested however. If you take magnesium or calcium take them at least 2 hours apart since they interferes with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take you iron at night. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. 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.
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, estrogen, 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, 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 and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.
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.
I am afraid this is normal. I have yet to meet a doctor who knows much about RLS and in my 73 years I am always the one who ends up "educating" my GP.Do you belong to the RLS Society in the UK?. If not I would recommend joining.
They are on a mission to educate doctors about RLS.
As your doctor apologised for not knowing much, see if she is open to information and send her the Mayo Clinic Proceedings paper on treatment of RLS. And maybe also refer to the rls-uk website. Not all doctors are unwilling.
Hi, I know you probably don't want to hear this but the NHS neurologist will almost certainly be totally ignorant of RLS as well, my experience is they will prescribe you medications that make it worse.
Sue Johnson, jooksg etc give amazing advice as does the rest of the group here.
What I would add to that is that the RLS-UK website has some really good advice for medical professionals and a medication guide that rightly puts Dopamine Agonists at the bottom of that pile where they belong.
Print out and highlight anything you think it's useful before any visit to a GP or neurologist.
If you're really suffering and can't take it then you could try cannabis or kratom but please be aware of the legal status and negative effects of kratom. Keaton has a lot of downsides but without it I wouldn't be here as I couldn't get any help from anyone when I needed it most.
If you can go private, just do it, you'll be waiting years for any kind of real help through the NHS, just make sure you search the forums for neurologist recommendations and pick one who isn't going to give you a Dopamine Agonist right off the bat.
Don't let anyone give you sleeping pills, antidepressants or Dopamine Agonists!
I’m in the UK and Sue is great but getting the blood tests and infusion as she recommends has been completely disregarded by my GP. She just kept saying I’m not anaemic. I’ve got to go online and book my own Nhs appointment. Sadly I can’t afford private let alone the prescription costs.
I do wonder at times how people continue to work when they have this condition. It’s exhausting and painful.
I'm sorry you're suffering, we all understand here! I had to keep grinding away at my GP for them to take it seriously, just keep trying, and if they don't help you ask to see a different doctor and bug them until they help you. Tell them you don't think they're taking your condition seriously.
I'm on 300mg pregabalin along with 2 30mg codeine phosphate at night and 150mg and 2× 30mg codeine around lunchtime and not great by any means but its stopped me climbing the walls I was really disappointed with neurologist who just took bloods and sent me for scans all we knew the answers to it was like just going through the motions one thing I can reassure you with is that you will get excellent help and advice form the great people on here good luck stay strong you will find a combination of meds that will help you
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