No help

[Whymelord]

Hi everyone I just got through to my gp after half an hour,I explained my situation and how I was feeling, she told me to visit my option if my eyesight is affected, she also said she will refer me to Elderly Care as there is no point in referring me to a neurologist as they wouldn't know much about RLS,ooooh my Lord if I wasn't stressed before the phonecard I'm certainly stressed now,I asked if I can come to the surgery so she said OK if I feel the need,I'm going at 12.30.not sure why I should bother ,there's just no help.

[SueJohnson]

That's terrible! When you go insist on a referral. What do you mean by "visit my option"?

[Madlegs1 in reply to SueJohnson]

Optician?

Bloody Autocorrect!🔥

[SueJohnson in reply to Madlegs1]

That makes sense.

[SueJohnson]

There are 3 other people who live in Ireland - Madlegs1, Loopylegs and wendersgame. Madlegs1 is especially knowledgeable and might know a doctor. You might want to message him.

[Madlegs1 in reply to SueJohnson]

@ Whymelord

Sleep clinics are where to aim for.

You will have to check online or ask the GP clinic to refer you to one.

All the other options know fizz all about RLS

I got my opioids only as a by product of pain from spinal reconstruction. The doctors finally accepted that it was a necessary prescription for RLS.

I attended a pain clinic in Tallaght hospital. You could get a referral to that, depending on where you are from.

Camilus Power was the consultant.

Good luck.

Feel free to pm me.

[Whymelord in reply to SueJohnson]

Thankyou Sue,forgot to say she suggested going back on Ropinirole and when I mentioned this Forum and the Mayo clinic Algorithm she just ignored it,will see what happens when I go to the surgery today,hope I can keep my cool😱

[Joolsg in reply to Whymelord]

Keep your cool and say that RLS UK, the charity for RLS now follow the MAYO algorithm.Explain that you are suicidal and cannot go on without sleep and the constant unbearable sensations.

Tell your GP that low dose opioids were the very first treatment for RLS by Dr Willis in 1670 in London when he compared RLS to being tortured on the Rack.

Tell her to look up the Massachussetts Opioid Study which makes it clear RLS patients do NOT develop addiction or tolerance.

Show her the post about Nightwalker999 who has been prescribed low dose methadone and is now sleeping and can sit still.

I am so angry on your behalf. To block effective treatments when patients are suffering so much through lack of GP education and knowledge is barbaric.

This is why we need education for doctors in the UK.

Stay strong, say your mental health won't bear up. Demand urgent referral to a Sleep Clinic. Or ask for a referral to a Drug rehab clinic. Pramipexole and Ropinirole are more dangerous than street drugs and we need low dose opioids like Buprenorphine or methadone to live a normal life without that unbearable sensation that winds us up constantly.

Good luck.

Xx

[Dires in reply to Joolsg]

Hi Joolsg

My previously mild symptoms have suddenly worsened with a vengeance. I had daytime tingling in my left lower leg and ankle which has now affected my right leg too. This is present all day and night and now affecting my left thigh too. My legs also ache and feel heavy. I do not tend to get the urge to move my legs during the day or evening but I have had RLS, every night in bed, for the past five weeks which is also worsening.

I’ve mentioned before that my serum ferritin is 50 but transferrin sat. 44%. I am taking ferrous bisglycinate 20mg alternate nights. I do use vaginal estriol 1mg twice weekly and wonder if this should be stopped. Unfortunately, when I’ve tried to stop it in the past I get recurrent UTI’s.

I’m going to take a zopiclone tonight to try to get some sleep but it leaves me so tired the following day.

Is it time I tried pregabalin/Gabapentin which ive been dreading?

[Joolsg in reply to Dires]

The vaginal oestrial will not affect your RLS as it is localised & not absorbed in blood. Also buy Waterfall D Mannose ( from Sweet Cure or Amazon) - it's brilliant for preventing UTIs.Your RLS is most likely caused by the low serum ferritin so I would push for an iv iron infusion.

If that works, which it does for 60%, you won't need meds.

Pregabalin or gabapentin do cause dizziness, especially in the first few weeks. The starting dose is 100mg for gabapentin and 50mg for Pregabalin in over 65. The side effects usually settle after a few weeks.

However, you may find a doctor who will consider opioids as first line treatment. Targinact ( Oxycontin and naloxone for constipation) is licensed in the UK for RLS but it often causes breakthrough RLS because it doesn't last for 12 hours.

Also, a low dose of codeine taken at night may work for you.

Pregabalin and gabapentin can cause falls and dizziness but not for everyone.

See your GP and start the discussion now. Make clear you don't want Ropinirole or Pramipexole or the Neupro patch because the rate of drug induced worsening is too high. You would face withdrawal in your late 70s which is too traumatic.

Hopefully your GP will monitor you on pregabalin or gabapentin and if the side effects don't suit, you can slowly withdraw and start a low dose opioid.

The omeprazole can worsen RLS, as you now know, so do consider the Symprove and a magnesium based antacid like gaviscon.

[Dires in reply to Joolsg]

Thank you again Joolsg. I’m hopefully seeing my GP on Thursday so I will push for infusion, I suspect it will be a struggle though. I may go down the road of private infusion if my GP is not happy to refer me.

I have now weaned myself off Omeprazole and seem to be ok after the initial rebound reflux.

I do feel very apprehensive about pregablin as I said before as I do walk a lot on my own, I’d be frightened of falling especially after reading the experience of others on this forum.

I expect I’ll be back more more advice in the near future. By the way, I had a great night’s sleep last night after zopiclone but it will be back to normal tonight 😱

[Dires in reply to Dires]

I saw my GP on Thursday. I took another copy of the Mayo Clinic guidelines with me.

When I told him about the tingling and aching in my legs, he examined then with a Doppler, he did not do a neurological exam.

I explained the guidelines would suggest the need for an iron infusion considering my nightly symptoms over the past 6 weeks. He told me it was ‘American rubbish to make money’.

I offered the printed research to him, he gave it back to me saying ‘ he couldn’t have his office filled with paper’

I asked if he felt I may need B12 as my levels were quite low. He said ‘that’s nothing to do with RLS’. I questioned this and he then looked it up on his desktop and eventually agreed to prescribe B12.

I told him that I was frightened for the future and really could not survive on so little sleep for the next 3 months while hoping the iron might help.. He didn’t even acknowledge me.

He has prescribed Codeine Phosphate 30mg to be taken at night “because this is what I prescribe for all my patients with RLS”. I have taken it over the past couple of nights but it really hasn’t helped.

My problem now is actually getting to sleep. I’m so anxious about trying to get to sleep and having a couple of hours sleep before the symptoms start.

I am going to write a letter to the practice and reference the Mayo guidelines and anything else I can find. I do think though that my next step will be a private consultation. Do you think a haematologist initially?

[NJB71 in reply to Joolsg]

I have just been reading an excerpt from the Massachusetts Opioid study and nowhere can I find that it makes clear RLS patients do not develop addiction or tolerance to opioids.

What it does say is that in the current climate of opioid addiction and overdose, strict regulation of these medications has been put in place and both patients and physicians need more scientific evidence to assess the risks and tolerability of this treatment long term.

Opioid addiction is well known in all areas of life and it can be dangerous to state that a certain class of patient can not become addicted to a certain substance. Addiction does not discriminate between class, race, social standing or medical condition. It is dangerous to state that someone can not become addicted to a clearly addictive substance.

[Joolsg in reply to NJB71]

I should have stated that the 500 RLS patients in the study have so far not developed tolerance or addiction. That is shown by the yearly charts showing the same low, steady dose is taken.The study was set up to show that, unlike pain patients, RLS patients did not seem to be needing higher and higher doses of opioids to settle their RLS.

Patients should always be screened before opioids are prescribed.

Without the study, RLS patients would be denied life saving opioids.

The over prescription of opioids for pain has led to RLS patients being refused the only meds left to them in many cases.

I accept there will be RLS patients who develop addiction.

[Joolsg in reply to NJB71]

relacshealth.com/blog/why-a...

You may also find blog 21 by Dr Andy Berkowski helpful. It explains why opioids are being denied to RLS patients and confirms that with correct screening and monitoring, tolerance and addiction to opioids seem to be avoided.

Again, there will always be exceptions to this.

[Jelbea]

Hello again Whymelord, I am in Northern Ireland and take buprenorphine sublingual. I was prescribed this by Professor Walker with whom I had several telephone consults. My doctors would not have allowed buprenorphine if it was not for Prof. Walker's letter and even now they are not too keen but have nothing else to offer!!

I had had buprenorphine patches before when at a different surgery but these proved to be unsatifactory after a few months as the 7 day patch only lasted 3 days.

I hope you can get buprenorphine which is working pretty well for me at present although I had a lot of trouble getting the correct dosage sorted.

Best of Luck,🤞