Hi I’m new to this forum, I have had restless legs for 5 or so years now. Recently I have acute shoulder pain. I take 200mg pregablin at night and 7.5mg zopiclone.
The dr decided to split my pregablin dose 75mg morning, then 75mg at night.
My legs were throbbing and my shoulder pain was excruciating. I was managing my symptoms on the first doses. (Or should I say coping with them). Why would the dr change doses??
I'm a little confused, Apparently you last posted on this forum 2 years ago and said you'd stopped taking alzain (pregabalin) because it wasn't working. You also mentioned using a "patch", but you didn;t say what the patch was.
Are you the same person?
Currently, if you only took pregabalin for your RLS, then one dose at night should deal with that.
Pregabalin is also prescribed for nerve pain. If your doctor thinks you have nerve pain then dividing the dose would be appropriate.
However, if my maths is correct your dr hasn't only just divided the dose he/she has reduced it i.e. from 200 mg down to 2 X 75mg = 150mg.
This poses two questions -
Has your doctor said your acute shoulder pain is nerve pain and if so, what's causing it?
The RLS aspect of the medication, i.e. the dose at night is less than half what you were taking before. Does your dr expect this to work?
It seems your doctor is using pregabalin to treat two conditions, but you're probably not getting enough for either.
I suggest you consult your doctor again and ask for the evening dose to be increased back to 200mg for your RLS. Maybe 200mg in the morning as well.
If the pregabalin is not controlling your pain and he/she hasn't said what's causing it, then ask about this.
bnf.nice.org.uk/drug/pregab...
According to the UK British National Formulary, the offical guide for prescribing up to 600mg a day can be prescribed.
Here's an excerpt from the guide
Indications and dose -
Peripheral and central neuropathic pain
By mouth
For Adult
Initially 150 mg daily in 2–3 divided doses, then increased if necessary to 300 mg daily in 2–3 divided doses, dose to be increased after 3–7 days, then increased if necessary up to 600 mg daily in 2–3 divided doses, dose to be increased after 7 days.
If you live in the UK you can see the guide for yourself
bnf.nice.org.uk/drug/pregab...
You need to know what's causing the shoulder pain, pregabalin is not appropriate for all kinds of pain, it may be inappropriate for you.
In addition zopiclone has a high risk of addiction and it isn't advisable to take it regularly or for any length of time. My GP will only were allow me 10 tablets.
I'm sorry to say, from what you say, I wouldn't have any trust in your doctor. Can you change?
I may be missing something.
I tried to come off pregablin numerous times but with lots of side effects. I tried other pain relief but all made me drowsy and unable to concentrate. The dr is trying to ween me off sleeping tablets hence spreading doses out. I think she is thinking it will stop restless legs 24/7. But cutting down as you say made my legs ache even more and I noticed my shoulder pain was more severe.
I took 200mg pregablin last night and feel much better today, I still have shoulder pain so I’m going to keep pestering the dr about this.
I'd say you need to find out the cause of the shoulder pain. It doesn't seem acceptable that you should just be presctibed possibly inappropriate medication without knowing.
Pregabalin does make you drowsy, it's OK to take it at night. However, if it makes you drowsy during the day, this isn't so good.
If the only reason i'ts been prescribed for you in the morning is the shouklder pain, then all the more reason to know what the pain is due to and be prescribed soemthing more appropriate.
It may be that there is some non-pharmacological remedy for the pain.
I totally agree, I want to get to the bottom of the shoulder pain. I really think the dr is ticking boxes for reviews. But at the moment I have been given ibuprofen for the pai
Ibuprofen doesn't sound sufficient.
I agree but the increase in pregablin has eased the shoulder pain
I think there is nerve damage there
It’s really difficult how do I get to treat my restless legs when other issues come up
Manerva what experiences have you had?
Sorry, what kind of experiences?
With restless legs and not going round in circles with gps
That's a long story!
I believe I’ve had RLS for nearly 4 decades. Possibly longer.
My first recollection is when I was woken by my first wife one night in the mid 1980’s She was pulling the duvet off me and leaving the room with it. When I asked what she was doing she said she was going to sleep downstairs as I was kicking her. I had no idea. I had never heard of RLS or PLMD at that time. I didn’t believe her. I think I started noticing RLS symptoms in the late 1990s, but they didn’t bother me much. I don’t think I first realised it was RLS until about 2005 and I never sought any help for it.
In 2008 I had to take 6 months off work due to acute stress and my GP prescribed me an SSSRI antidepressant. I don’t think I mentioned the RLS to him. In 2009 I weaned off the SSRI, but my second marriage was breaking down and my wife and doctor ganged up on me and persuaded me to take another antidepressant. I don’t recall this, but I looked at my medical record a short while back and it does say that I’d mentioned to the GP that I thought the antidepressants were making the RLS worse.
My RLS got very severe in late 2009 and I was referred to a neurologist. I was simply not sleeping, hardly at all, every night. Luckily I had just retired. The neurologist saw me for about 10 minutes and said I had idiopathic RLS and prescribed pramipexole and told me I could take up to 540ug.
IO hadn’t realised there was a treatment for RLS and the first night I took the DA, it was amazing, sleep and absolutely no symptoms. They crept back a bit after a few nights and not knowing any better I was soon taking the full 540ug.
This was never followed up by the neurologist or my GP.
After taking the DA for a few years, I noticed that symptoms were creeping back and I wasn’t sleeping too well. If I forgot to take the pramipexole, it was hell. My GP referred me to a neurologist again in 2012. This one prescribed clonazepam, but I was told I couldn’t take it for than a month. It sort of worked but not very well.
I have used an alarm on my phone since then to remind me to take the medication.
I saw GPs quite a lot between 2011 and 2018. This was mainly because I had other health issues. My RLS was discussed and the GP mentioned that there were alternatives to pramipexole, I think he meant rotigotine. Nothing else was mentioned.
By 2016 I was suffering augmentation, but didn’t know that it was that, didn’t know it was due to the DA and didn’t think I could do anything about it. My GP just repeated that there are other medications.
I saw him about back pain in 2017 and had an MRI. It was confirmed I had a compressed nerve and my GP started me on amitriptyline. My back pain didn’t get much better and I started having pains in my leg. My RLS seemed to be getting worse too.
By August 2018, I was only sleeping about 2 – 3 hours a night. But was more preoccupied with the pain in my leg which was becoming unbearable. The GP stopped the amitriptyline, prescribed a course of naproxen, codeine for the pain and gabapentin for the pain. That worked for the pain.
It was then that I discovered Healthunlocked and RLS-UK and learned about augmentation and learned that gabapentin could be used to treat RLS. Acting on suggestions from people on this forum in Oct 2018 I started reducing the pramipexole.
In Jan 2019 I was down to 360ug pramipexole. I went to see a GP for help getting off the pramipexole. She asked why I wanted to stop it, I said augmentation. What is augmentation, she asked. I asked for sleeping tablets, as I was still only sleeping about 3 hours a night and perhaps an opiate. She agreed to prescribing zopiclone but refused the opiate. She said a specialist might prescribe it. She said it would take a long time to see a neurologist. I asked her to refer me to s sleep specialist. She refused, RLS isn’t a sleep disorder! She suggested seeing a neurologist privately and said when I’d found one, she’d write me a referral letter.
RLS is officially designated as a "sleeping-movement disorder" (ICD-11)
She agreed to doing a ferritin test and later said it was normal and I didn’t need to do anything. It was 46ug/L, so I started taking an oral iron supplement. Luckily I didn’t need an opiate and managed to do without the sleeping tablets. I started sleeping better in March 2019 and by June, I’d completely stopped taking the pramipexole. I’ve continued with the gabapentin. I still also have some nerve pain. Since then I hardly ever have any RLS issues and sleep well.
I can say that the doctors I’ve seen since 2009, (apart from the neurologist – even a GP told me this neurologist had a bad reputation) have all been very good. I have had other issues which they’ve dealt with fairly well. They’ve all been very compassionate. They listened and I always felt we discussed things and jointly agreed a care plan.
Maybe if I’d been more insistent about my RLS, I might have got more from them, but As I say, I had other issues.
The other thing, which is now apparent is how ignorant about RLS they all are.
I wonder how different the last 11 years would have been if
- they’d known that antidepressants exacerbate RLS and suggested non-pharmacological measures instead of referral to a neurologist.
- The neurologist had warned me about the risks of taking a DA, i.e. if he knew.
- The GP had known that amitriptyline makes RLS worse
- The GP had known that gabapentin is an alternative to a DA
- The GP had known what augmentation is
- Etc.
It does show that you have to be able to know about your own health conditions and luckily I’m able to get information and appreciate it. I do wonder how other people get by. I don't think some do, that's why I try to contribute to this forum.
In 2003, a GP referred me to the wrong hospital department and I was treated unsuccessfully for six months because of a misdiagnosis. It was only after going back to my GP and insisting on being referred to another specialist that I was given the correct diagnosis within five minutes of seeing the specialist.
In 2004 a surgeon carried out an operation on me and insisted I needed a second one as I lay recovering from the anaesthetic. I refused and later found out I hadn’t needed the first one.
In 2012 I had an operation and didn’t stop bleeding for 4 weeks. They kept telling me it would stop. I was readmitted to hospital once. A doctor wanted to carry out a procedure on me that I thought very dangerous. I refused to let her and later found out she wasn’t competent to do it anyway. They gave me some antibiotics and discharged me after one night saying the bleeding was settling. It wasn’t. I was admitted again for IV antibiotics and was there 4 days. It was only then that the bleeding stopped.
I believe there are some genuinely good doctors and a few terrible ones. However, it isn’t necessarily just knowledge that makes them good and it isn’t necessarily their ignorance that makes them bad.
The bad ones I've experienced wob't admit to making mstakes, won't admit their ignorance. are autocratic, arraoant and patronising.
I once knew one that was possibly a psychopath. He should have been arrested for manslaughter, but it was covered up.
The majority are great though, just not omniscient.
You did ask
Thankyou, you have been through the wars. I think when I look back when I had my daughter 19 yrs ago my legs started aching terribly but I didnt believe restless legs were recognised then.
I recently saw an advanced nurse practitioner and she was blatantly honest and said if you find something that works to let her know. She fully understood she did not have all the answers. This was comforting in a strange way because I often do not have the words to describe what rls is like.
Hi Manerva just been to Drs regarding my shoulder pain they have referred me for an mri suspecting nerve damage
Great, I hope there's not too much delay in getting the MRI. They can't do them so fast as they have to deep clean the scanner between each patient becasue of the pandemic.
I also hope it identifies the cause of the pain.
I took pregablin in the morning for 2 weeks and I was sleepy and could not focus.
Doctors don’t always get it right! Speak to him/her and say that you want to go back to your original prescription. Have you tried Pramipexole and Gabapentin at night for your RLS? I’ve had it for 20 years and this combination works brilliantly for me.
Ropinirole and Pregablin
Pramipexole 
Tramodol &Pregablin
