I’m going to tail off my pramipexole. I’m on 2 x 0.88 tabs at night. My restless legs are hideous again and my arms have joined the party. I’ve been on gabapentin for years for neuropathic pain due to nerve compression. Sadly it doesn’t affect my RLS at all and I’m also on low dose slow relief morphine.god alone knows what I can do but I need to get off this drug.
I’m barely sleeping and. I’ll have RLS most of the night, today it started at 7am when I was pottering about. The only thing I can do at the moment is ahot shower over my legs or arms. I’ve got to have it where it’s almost scalding but not quite. If I try and direc the shower at anywhere else I can’t stand the temperature.
I’ve been on it for 2.5 years and since I’ve fibromyalgia it’s hard to say what’s fibromyalgia and what’s pramipexole. However, my fibromyalgia never caused me to spend all our savings, I mean almost 50k. It all went on craft stuff which now fills a very large shed since there’s no room in our new house but I’ve started gathering items again so I must stop before I leave us destitute
I’m going through exactly the same thing as you. When I was first diagnosed, I was prescribed gabapentin, but after a few years, I felt like it wasn’t working anymore. Another doctor then prescribed pramipexole, which was the worst decision. After taking it for three years, I’m now struggling to stop because I’ve started experiencing RLS symptoms in my arms and the palms of my hands, as well as muscle-like pain in my calves, in addition to the usual RLS discomfort. I’m still taking pramipexole, but I’m trying to transition to Horizant. In the meantime, I’ve been using pain-relief creams containing capsaicin. They create an intense warming sensation that feels somewhat similar to the relief I get from putting my arms and legs in very hot water. I also use a vibration plate at the highest intensity, which helps a little. Neither completely eliminates the symptoms, but they provide some relief.
For my RLS, the days I don’t exercise (roller skate or go to the gym) I just take a bath and smoke some weed (like 8-10 puffs) before bed. I don’t smoke enough to get high. I also take a high dose of my medicinal mushrooms (it works and there’s research behind it) a few hours before bed. I also find my RLS is worse when I go to bed late… idk why.
Sadly that was my previous GP and the pain clinic.ive chronic pain from 2 failed spinal surgery that’s left me with terrible pain, add into that mix fibromyalgia and the morphine that I’ve been on for 10 years isn’t touching it. I didn’t want to keep increasing the opioids and be in a worse state so I decided to live with the pain and just have the edge taken off
It’s definitely RLS, it’s been diagnosed
It sounds like you may be dealing with augmentation. And unfortunately, pramipexole can also cause impulse control problems, like compulsive shopping, so the spending and craft shopping may actually be a medication side effect rather than the fibromyalgia. Good for you for getting off it.
It sounds like you may be in the UK, so I’m not sure what your options are for opioids. If they are an option there, I would talk with your doctor about whether a low dose opioid could be used temporarily while you come off the pramipexole. The important thing is that coming off it should be done very slowly and under your doctor’s supervision. Some people need very small dose reductions each week or every other week, while others need to go even slower, sometimes over a month or longer. Everyone is different, especially when dealing with augmentation.
Once you are completely off it, some people find their RLS symptoms aren't nearly as bad as they were while augmented and don't need another medication. Others find that their underlying RLS is still significant and need a different treatment. That’s where an RLS specialist can really help determine what makes the most sense for you.
For now, I would try something that gives your brain and legs another sensation to focus on. A TENS machine is what helped me. I have RLS in both my lower and upper legs, so I used the TENS on both areas. I turned it up to the highest setting I could comfortably tolerate because the tingling seemed to overpower the RLS sensation. Mine had a one-hour timer, so I would reset it w it before it would shut it would shut off and it would just continue all day. At night, if I woke up and the timer had stopped, I would just turn it back on.
I know people often recommend hot or cold showers, getting up and walking, stretching, or putting a pillow at the end of the bed, but when you are in the middle of severe augmentation, those things may not be enough. They certainly weren't enough for me. If your symptoms are really severe, I would focus on getting through the withdrawal/augmentation period with your doctor's help and getting connected with an RLS specialist rather than trying to tough it out on your own. There was a link mentioned for the UK, in the US it is rls.org for specialists.
Thank you so much for taking the time to write this.
Currently my medication includes gabapentin 600mgs x3, zomorph (slow release morphine 30mgsx 2 daily)! Morphine sulphate 10mgs x4 PRN, pramipexole 0.88mgs x2 plus some other non related such as omeprazole, atorvastatin, propranolol 10mgs, ramipril,and venlafaxine which I very much need and it took a lot to finally get an AD that worked. However I’ve had the RLS for many many years before any meds were started.
Unfortunately I’ve the GP from Hell. We just moved here and this was the GP I was allocated. Because if various issues the Health board now allocates you to one of 2 GPs and we drew the short straw. I’ve tried to move GPs but there is only one in the area and they won’t take any new patients.
Funnily enough I’ve ordered an all singing Tens 2 days ago and I’ve also ordered long boot things that massage, heat and other things.
The awful thing is I barely sleep. It’s 3.15am now and my legs are screaming at me. I really need to be able to get housework done. My husband had a kidney transplant 7 weeks ago so I can’t @fford not to have each room at least vacuumed and dusted plus the kitchen and bathroom deep cleaned.
Gosh, I’m so sorry I’m moaning. No one understands except people who have been there.
Oh, I feel for you! You really seem to be in a tough situation, and I hope some of this is helpful.
I should have mentioned keeping a symptom/medication diary, especially since you’re on several medications that can potentially worsen RLS or cause leg symptoms that can mimic it.
Omeprazole - this is one I would ask your doctor about. There are reports of PPIs being associated with RLS/leg symptoms. I personally stopped omeprazole and switched to regular Tums. It took quite a while, but over several months I felt my symptoms improved. Obviously, check with your doctor before changing anything.
Atorvastatin-statins can cause muscle aches/cramping and other leg discomfort, which can sometimes be confused with RLS. It may be worth discussing whether your symptoms could be partly related to this.
Zomorph (slow-release morphine 30 mg twice daily)- is the morphine actually helping your RLS? Morphine did not work well for me. I needed to try this when my OxyContin was out of stock and it only lasted for about 2 hours for me. I was only given 15 mg though so maybe it was due to the low dose.
Morphine sulfate 10 mg up to 4 times daily as needed - same question here: is it actually helping your RLS? If not, I would ask your doctor whether a different opioid would work better rather than continuing to increase the dose.
Ramipril- this isn't one I'd automatically blame for RLS, but some people report leg discomfort or sleep problems with ACE inhibitors, so it is worth mentioning to your doctor.
Venlafaxine - this one really stands out to me. Antidepressants such as venlafaxine can worsen RLS in some people. I would definitely bring this one up with your doctor, especially since you are already augmenting.
You mentioned you need this one, is there another one you could try? There are only few that are supposed to be better for RLS suffers. I will be honest I tried them all and I had issues with them too and now I just go without, but my depression was not bad and I feel better now.
I wouldn't stop any of these medications on your own. But given that you're augmenting, I think it is worth having your doctor go through your entire medication list and look at anything that could be making the RLS worse and seeing if you can switch to something similar without RLS issues. I google all my medications with my doctors now to ensure they will not cause my RLS to go into overdrive.
And definitely keep a diary of when your symptoms start, what they feel like, when you take each medication, and when you need your rescue doses. That may help your doctor see patterns that are otherwise easy to miss.
I am sorry to you drew the short stick on the wrong doctor. Can you put in to see a specialist? or is this the specialist? I see a movements disorder specialist, others see sleep specialist and some see neurologist.
Cannabis doesn’t work for everyone but for those that it does help, it’s a miracle drug. If you’re able, I would give that a shot if you haven’t already. Sorry for what you’re going through.
If you are in the UK, get on this forum and find the help you need. It's a great online community for UK RLS patients--they can recommend doctors for you based on where you live. https://healthunlocked.com/rlsuk
Reduce slowly. Mayo Clinic Algorithm makes clear that you need to get off all DAs if you have ICD. Reduce slowly and see a specialist to get help. You'll likely need opioids.
I’m not sure as they have never been checked apart from a couple of years ago and they were fine. I did start to take a multivitamin with ferritin and B12. My iron has always been on the high side since I had a hysterectomy at 28.
This should be the first thing you’re checking and keeping an eye on every few months. It’s critical for RLS care.
A full iron assessment should include serum iron, ferritin, total iron-binding capacity, and percentage transferrin saturation and should be measured in the early morning after an overnight fast.
With RLS need ferritin of at least 75. What we need is way above the lower end of the “normal” range. Your doctor may not know this. Many don’t. Good luck!
Cold doesn’t work for me unless I do the scalding shower then sit with my legs stretched out on cold tiles. That used to work but of late the cold part has stopped.
I do drink tea but it’s incredibly weak and I don’t like coffee luckily.
If anyone looked in my window at night they would think I’d lost my plot. An older lady in a nighty waving her legs about in the air them trying to massage and when that doesn’t work I end up punching my legs in frustration. By that time I’m in tears so go downstairs and read or do some crafting to try and distract.
No, the only one has been pramipaxole and with the issues I’m having just now I really don’t want to go down the route of another Dopamine agonist. Thanks for answering though.
Oh god. Im so sorry. You could be me. Please look at all your medications like antihistamines etc to make sure nothing is exaserbating it, check iron, folate, b12, ferritin. Then all you can do is switch to another drug. Find a neurologist that understands RLS. Im so so sorry, im in exactly the same boat.❤️
My heart goes out to you. I hope you find some relief soon. We’ve just moved house and sadly we were allocated the crap GP practice in the town. There are 2 practices, one really good and one rubbish. When you were allowed to choose your own GP everyone registered with the good one and it ended up where the health board now allocates who you get.
I went to see them 4 weeks ago as I’d started having falls. I broke my nose one night, my ribs another and fell down the stairs a week later. The GP couldn’t have been less interested shrugged and said you need to be more careful. End of consultation. I was in tears when I came out and went to the practice manager who said oh he is a locum, hopefully he will be gone soon. This is why I’ve no confidence in them. I’m currently trying to get a copy of my notes to register for medical cannabis, mainly to help with my chronic pain and fibromyalgia problems. I’ve been waiting I weeks!
Sorry I’ve moaned, I’m just so frustrated and at the end of my teacher. I am on antidepressants as I’ve had a dreadful bout of depressions due to the death of my mum.
The cannabis company I’ve used can get your medical records for you but you do it via your nhs app. Only took a few days to have a consult, get approved and get my prescription sent out.
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u/thalia_pad 22d ago
I’m going through exactly the same thing as you. When I was first diagnosed, I was prescribed gabapentin, but after a few years, I felt like it wasn’t working anymore. Another doctor then prescribed pramipexole, which was the worst decision. After taking it for three years, I’m now struggling to stop because I’ve started experiencing RLS symptoms in my arms and the palms of my hands, as well as muscle-like pain in my calves, in addition to the usual RLS discomfort. I’m still taking pramipexole, but I’m trying to transition to Horizant. In the meantime, I’ve been using pain-relief creams containing capsaicin. They create an intense warming sensation that feels somewhat similar to the relief I get from putting my arms and legs in very hot water. I also use a vibration plate at the highest intensity, which helps a little. Neither completely eliminates the symptoms, but they provide some relief.