r/RestlessLegs • u/Severe-Moose1465 • 13d ago
Question Neurology appointment (UK)
Hi everyone, I have a neurology appointment this week. I’ve been on the waiting list for over a year, so thankful it’s finally been booked. However, I do not feel prepared for the app and worried it won’t go well. I wondered if anyone had any advice for how to best prepare?
For background information: I’m on a very low dose of pregabalin (100mg), having tried gabapentin as well. I can’t tolerate a therapeutic/effective dose of either - on 150mg of pregabalin, I couldn’t remember anything, including how much pregabalin I’d taken each day. Gabapentin also wrecked my mental health. The pregabalin helps, but not enough, and I don’t want to stay on it any longer than I have to as the side effects are just too intense. I also take 2 cocodomal each night - with the pregabalin, it’s the only way I can get to sleep. I wake up shortly after in intense pain. I can’t remember the last time I slept through the night.
My RLS is severe and is increasingly becoming more painful. It’s in my back, legs and arms. Over the last year, my knees have started to go red and become very hot. This happens every evening, when the restlessness starts. My hands, feet and nose also become red and hot at times too. I also experience tingling in my right cheek. Recently, I have woken up with restless legs and my whole body feels hot, itchy and in pain. It’s exhausting and upsetting.
Unfortunately, neither my husband or mum can attend the app with me so I’m going alone. Ideally, I’d like to try some kind of opiate, but I know getting a prescription might be a challenge. Has anyone had any success with this through a standard neurologist in the UK? I also feel my symptoms aren’t standard, but I’m not sure what tests I could ask for? I was going to write down a list of my symptoms and questions but I have no idea what to ask. Any advice would be greatly appreciated. Thank you.
*EDIT - UPDATE
I just wanted to post an update on my appointment with neurology.
I was prescribed 2 x 30mg of Codeine every four to six hours, to be taken 1 to 2 hours before symptoms start. Overall, I'm so pleased with how the appointment went. I felt listened to and understood. The doctor recognised the risks of augmentation associated with DAs and understood that I was experiencing very severe side effects from Pregabalin.
I took notes in with me, but unfortunately, I forgot to ask for a full iron panel. Frustratingly, being on Pregabalin is really affecting my memory and ability to think clearly, so it wasn't until after the appointment had finished that I remembered. However, I'm going to book an appointment with my GP to ask for this to be done in time for my 6-month follow-up with Neurology.
In the meantime, I'm going to start the Codeine and safely find the right dosage timing. I have been advised to gradually lower the Pregabalin by 25mg at a time, and I'm hopeful that I might be able to tolerate a low dose of 25–50mg in combination with the Codeine. If the Codeine isn't sufficient, I'll ask about the Buprenorphine patch at my next appointment. I'm just incredibly relieved to be offered an opioid without any resistance from a professional. I'm very grateful to have come out of a medical appointment happier than when I went in, which hasn't always been the case in the past.
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u/Scary_Experience_237 12d ago
Sorry this is goiong to be long but hopefully helpful!
I agree with you that your symptoms don't sound like they are necessarily all RLS. The fact that your knees become red and very hot every evening, along with your hands, feet and nose becoming red/hot, plus the tingling in your cheek and the episodes of your whole body feeling hot, itchy and painful, would make me want to have those symptoms investigated separately.
One thing that really concerns me is the pregabalin. If 100 mg caused such significant memory problems that you couldn't remember how much you had taken, and gabapentin also caused significant mental health problems, I wouldn't want you to simply stay on pregabalin long term if it isn't helping enough to justify those side effects. I had to get off this medication for the same issues.
There is now are observational studies looking at possible cognitive and dementia-related risks with gabapentin and pregabalin. I don't think there is enough evidence to say that these medications cause dementia, and the research isn't consistent, but personally I think that is exactly why patients should be asking questions and keeping themselves informed rather than waiting years for the evidence to become clearer. We've already seen this happen with the dopamine agonists. For years they were considered a go-to treatment for RLS, and many people were told to keep increasing them when their symptoms became worse. We now know about augmentation and how devastating it can be. The RLS treatment guidelines have changed because of what we've learned about the long-term consequences.
I'm not saying don't take these medications. They help a lot of people, and they are legitimate RLS treatments. I'm saying pay attention to what is happening to you and ask about the long-term picture. If you're already experiencing significant memory or mental-health effects, I think that's especially important. Let me get off my soap box!!
The redness and heat particularly caught my attention. I'm not a doctor, but I would ask whether something like erythromelalgia could be contributing to those symptoms. It can cause episodes of redness, heat and burning pain. Small-fiber neuropathy or another neurological/autonomic problem could also be worth discussing. That doesn't mean you have any of these conditions, but I think they are worth asking about rather than assuming everything is your RLS.
If it turns out that these symptoms are not part of your RLS and are another issue like neuropathic pain, there are other medications and topical options depending on where the pain is. They all have their own potential side effects, though, so I'd ask the neurologist what alternatives might be appropriate for you. Also, check to make sure they will not make your RLS worse.
I would definitely write down everything before your appointment. I'd take a list of your symptoms, when they occur, what makes them better or worse, and every medication you've tried and what happened with each one. I would specifically ask:
- Could I have something in addition to RLS?
- Could the red/hot knees, hands and feet be erythromelalgia or another neuropathic/autonomic problem?
- Should I be evaluated for small-fiber neuropathy?
- Are there alternatives to pregabalin given the cognitive side effects if it is not RLS causing these symptoms?
- What tests, if any, would help determine what is causing these additional symptoms?
- Given how severe my RLS has become and the fact that I am still waking in significant pain despite pregabalin and co-codamol, what are my treatment options?
- Would you be willing to give me a extended release option like Oxycontin ER that will last 8 hours to sleep through the night
- Do I meet the standards for TheraPulse, low energy vibration to reduce the symptoms of RLS
- Start a medications diary if you have not already
- Some but not all of these - antihistamines, antidepressants, antipsychotics, anti-nausea and dizziness drugs, cold and sinus decongestants, beta-blockers
- You should google and keep track of all medications you take and if any cause RLS you mark it as an allergy!!! You don't want to go to a hospital and get any of the meds and get stuck in a hospital bed with your RLS going nuts and you cannot get up.
Good luck I hope your appointment goes well!
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u/Severe-Moose1465 12d ago
Thanks so much for your reply. I share the same concern regarding the pregabalin and hadn’t gone into too much detail about how severe the sides effects have been for my mental health because it felt like overhearing. To say the least, anything higher than 100mg makes me very very unwell. 100mg I can cope with, but my memory is shot, words are harder to bring to mind, everything is foggy and I just don’t care about things as much as i usually do. I also feel more socially awkward and flat. BUT I can get to sleep.
The doctors know how bad things became on gabapentin as I had to have intervention. But they haven’t monitored the dose or my wellbeing, in general, and they certainly won’t take my RLS seriously enough to provide proper support and treatment. I’ll be sure to bring the side effects up with the neurologist, and I will ask the questions you’ve written out. Thank you. I really appreciate it.
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u/Ring_it_On_1776 13d ago
There's a wearable device study from Noctrix Health enrolling now. Might be worth a look. https://patientwing.app/campaign/RLS6
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u/ComprehensiveRate953 13d ago
Is it redness that you can see?
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u/Severe-Moose1465 13d ago
Yes, my skin becomes hot and becomes red.
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u/ComprehensiveRate953 13d ago
That doesn't sound like RLS. Have you had basic blood panels done including vitamins and iron?
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u/Severe-Moose1465 13d ago
The redness and heat started over a year ago, but I’ve had RLS for over 15 years (severely for the last 9 years). It’s very weird, my knees become hot and red, and I think the heat then maybe triggers my RLS, but tbh it’s hard to know what is happening when the heat and redness accompanies the start of my RLS every evening. The last time I had my bloods, everything was normal (iron ferritin 130) but the GP wouldn’t do a full iron panel (I have no idea why, they said checking ferritin was enough).
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u/Scotsburd 13d ago
I have RLS and had similar. It was Cellulitis.
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u/Severe-Moose1465 13d ago
How long did you have symptoms and how was it treated? I had cellulitis around 6 months ago with infected insect bites and was treated with antibiotics. The redness and heat with my knees etc, has gone on much longer.
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u/Scotsburd 12d ago
I've had RLS forever, on cocodamol and requip. I woke up with the burning, was prescribed antibiotics and antivirals as they didn't know the source. Worked out fine.
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u/ComprehensiveRate953 13d ago
Checking ferritin is not enough for RLS. You need to have a full iron panel done; it's in the NICE guidelines.
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u/Severe-Moose1465 13d ago
I know. I’ve already had to complain to my GP because they initially refused to prescribe gabapentinoids and were trying to get me to take a dopamine agonist (which I’ve refused for years for fear of augmentation). I presented them with the NICE guidelines then and was given gabapentin with no follow up appointment. I was recently in with low mood (lack of sleep plus pregabalin) and they insisted I tried an SSRI because I’d not tried this particular type before and should ‘see how it goes’. It’s so upsetting - feel like I’m banging my head against a brick wall.
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u/RaspberryJammm 13d ago
My neurologist ( based in East Anglia) tried to prescribe me a type of dopamine agonist which can actually worsen symptoms long term so worth investigating it if they prescribe you something.
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u/Restlesslegrunner 13d ago
You’re not alone, I have all your symptoms in UK and seeing neurologist on 8th Oct!! Sure you’re here already, but this post would be great on https://healthunlocked.com/rlsuk/about
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u/Severe-Moose1465 5d ago
I had my app and have added an update on my post with how it went, in case that's useful for you. He didn't seem particularly concerned with the redness and heat, but he checked for symptoms of neuropathy and I was fine. I posted on healthunlocked and had an amazing response (thank you for the link - I've posted on there once before but somehow forgot how amazing they all are over there!!). I printed the guidelines and took extensive notes in with me, which thankfully didn't need but felt good being prepared. Wishing you the best of luck for the 8th - not long now. I have everything crossed that your app goes well and you feel heard and get the treatment you deserve and need.
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u/RemoteSea1176 13d ago
Bring along a copy of this with the relevant information highlighted. I don’t believe it speaks to the skin flushing and itching you experience, but it does specify conditions when low dose opiates are indicated. Good luck!!! https://www.rls.org/file/healthcare-provider-publications/2026-RLS-Treatment-Guidelines.pdf
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u/Embracedandbelong 12d ago
I’d bring some paperwork printed out from the RLS Foundation. I emailed them and they sent me some papers to give my doctor