Just came off the telephone with the third GP I have spoken to in the last few months. I asked her to prescribe me either Tramadol or Codeine as the only thing helping me at the minute is taking shop bought Co-codamol and Nurofen Plus. I have tried Pramipexole and also now on Gabapentin 900mg. She said she would not prescribe painkillers at all for RLS as they are addictive and stop working. I asked to be referred to Neurologist who would prescribe them. She was very abrupt and said that Neurologist wouldn't help but she would ask their advice! She offered Pregablin but then just upped my Gabapentin. I even asked her about Rotigotine patch which she dismissed. I am literally at the end of my tether as she just made me feel like a junky for asking for pain relief. I am sitting here in tears typing this as don't know what to do next. Does anyone know of a specialist in RLS in the North East?
I hate my GP - making me feel like a ... - Restless Legs Syn...
Restless Legs Syndrome
You need to get a referral to a Neurologist. I don't understand why you are taking all the meds you are on. I can only imagine that a GP has been trying to help you with various meds available from the NHS.
Kirsty Andersen in Newcastle.
How disgusting is your GP? Clearly knows Sweet Fanny A about RLS.
NICE guidelines mention opioids & Targinact which is an opioid.
Sadly we all seem to have to battle ignorance by our GPs.
All I can suggest is that you contact Kirsty Andersen direct and explain that your GP is reluctant to refer you because she doesn’t know much about RLS and you’re desperate. Usually the neurologist will agree to see you but ask for a confirmation email from the GP.
I think they’re all desperate to protect their budgets.
Finally- what meds and doses are you currently taking? Has your GP carried out blood tests as set out in NICE guidelines? Serum ferritin needs to be above 100, preferably 250.
Make sure you’re not on meds that worsen RLS like anti histamines and anti depressants or cough and cold meds.
Thank you. Ive emailed her NICE guidelines which I already mentioned on the phone. I tried pramioexole but stopped as frightened of augmenting. On gabapentin at the minute 900mg. I will write to the the neurologist you suggest. Regarding iron she said it cant be that cause I'm on ferrous fumerate anyway for crohns and iron levels will be okay!!!! I despair. My vitamin d levels are borderline too low and she said that won't make a difference!!
Vit D is essential for auto immune diseases so buy it online. As you have Crohns, have you considered a pro biotic like Symprove? It receives good reviews for Crohns & severe IBS. Clearly you won’t be absorbing enough iron and that could be the cause of your RLS.
You could even ask to see a haematologist at your nearest hospital and ask for an Injectafer iron infusion. Your GP will come up with excuses - tell you it’s dangerous (it’s not) but iron infusions of Injectafer dramatically improves RLS in 60% of sufferers and you sound like a prime candidate. I suggest you write direct to haematologist and include evidence based study to back up your request. Link attached. It’s sad that we have to do our own research, but most doctors know NOTHING about RLS as they’re not taught it at Med school and they’re too busy to do the research.
Thank you so much for your response. I will try the prebiotic, im compiling a complaint to the GP and also going to write to a neurologist
Hi, sorry to hear about your problem. I have debilitating RLS stemming from diabetic peripheral neuropathy, nerve damage. Without pain meds l can't function. Opioids get to the nerve and kill the pain. After 5 yrs and urine tests with monitoring , l am not addicted. I find that neurologists, younger docs, PAs and NPs are more prone to prescribe, because they're current with disorders that weren't always recognized. My insurance allows me to chose a neurologist without a referral from my primary GP. I found a good neurologist, who is also a pain management doctor who understands pain. He has had me on opioids for 5 yrs. it was fentanyl, then morphine and lm on OxyContin every 12 hrs and oxycode for break through. Unfortunately all doses were reduced a couple yrs ago with new laws to protect addicts, without considering the chronic pain population. The strict drug laws may be what's preventing the 3 GPs from prescribing, in fear of losing their license. Maybe u are able to change your insurance to the kind that does not need referrals from the GP.
I have tried all drugs always mentioned with no relief, accept for opioids.
PS she’s wrong about ‘painkillers’ being addictive & stopping working. Here’s the opioid study from Massachusetts General hospital
Hi I sympathise with you I have had a similar experience with you and to be honest at times I felt almost suicidal. I tied three different neurologists both nhs and private’s. I had a bad experience with the private one who put me on a v high dose 1.26 mg pramipexole and I had awful time of coming off it having augmented. The best neurologist I found after a lot of research was a Dr Wong at the Sheffield Hallamshire hospital (NHS). She had me doing a blood test and checked for iron ferrin levels, B12, magnesium etcI was put on Pregabalin and codeine and that is were I am at the moment with mixed results
My problem is with insomnia with very fractured sleep pattern the rls is still there but with a reduced severity
Hope this is off some help the Hallamshire is only doing telephone consultations due to the virus
Don't give up Jamhulio. You shouldn't have to suffer like this, it's such ignorance. My GP also refused to refer me to a neurologist.
If you can, go private, but get one who is recommended, as Hoochybaby mentioned you can still get ill advised ones, and then ask to be put onto the NHS list once you have seen them if you can't afford it ongoing. Most consultants will transfer you to their NHS list and continue to see you that way. Mine did.
I agree with Jools' advice on your stomach. Our guts and our health are so intricately connected from the evidence I have read. Prebiotics, probiotics and supplements might be a great help, along with iron, especially if you have malabsorption due to the Crohn's.
Stay strong and all the best.
Perhaps you could be lucky like me, I came off ALL Meds, and RL disappeared apart from when they get too hot or I'm too tired, then I make a hot toddy, or two and then go to bed.
I agree with Jools. We had the pleasure of seeing and hearing Kirsty Anderson a few years ago. She certainly knew her stuff!
I have RLS and have taken 1 mg ropinerole at 6 pm, and 10 pm along with 300 mg gabapentin at 10 pm. This has worked for me for 5 years. I also take many supplements such as D3 2,000 mg, turmeric, fish oil 2,000 mg, 1,000 mg vitamin C. Ropinerole is available in 2, 3, 4, and 5 mg pills. If a larger amount worked, I would use it. My Neuro had prescribed for me to take one ropinerole pill in the early afternoon, if symptoms appeared earlier, but I have been able to get by with only the 2 pills daily. Best wishes for your relief. Many people suggest leg exercises in late day for relief later on.
You might find a neurologist who is knowledgeable about RLS if you call a sleep center or sleep specialist. They are usually neurologists and know how to treat RLS because many people go to them because the rls causes insomnia. I found my neurologist this way and he told me about augmentation with Ropinerole. He helped me get off it and now I am on Gabapentin. By the way, your dose of Gabapentin may be too low.
Gabapentin does not help me anymore but now I got Targiniq from a specialist doctor of RLS and it is the best medicine I have ever had and I have had RLS for 15 years😀
I'm so sorry to hear how much you are struggling. I was also at the end of my tether whilst on ropinorol but fortunately my doctor was quite respective of my researched knowledge. I found that once I had come off ropinorol I am SO much better now on 3 gabapentin. I have hardly any problems (take one at about 7.30 and 2 at 9.30). I occasionally wake up with my legs twitching but find massaging them with magnesium oil helps. On the rarer occasion when I have to get out of bed I lie on the floor downstairs with a duvet and usually fall asleep watching TV. Hope you find a way to cope.
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