Waste of my time again

[Whymelord]

Hello everyone, I went to see my gp Mon.yet another one that I haven't seen before. I explained my desperate situation hoping for assistance.told her the Pregabalin wasn't helping and stressed that I was at the end of my tether, I mentioned the Mayo Algorithm re.RLS.i believe that immediately she was not happy, anyway her advice was to try Ropinirole, I told her that I did not want to go down that route again as I have recently weaned off Pramipexole. She was sooo dismissive of my feelings or opinions, said all medications have side effects.she is referring me to "Care of the elderly" at my local hospital.I mentioned to her that I felt that gp's weren't really listening to me as I feel they are not up to date with RLS medications, ooh,she took great offence so I'm gonna keep taking Pregabalin, hopefully the hospital app.will come soon and maybe just maybe it will be helpful. I asked her if she could refer me to a Consultant, said it could take 2 to 3 years.

[Joolsg]

Utterly disgraceful treatment. I'm not surprised. GPs simply do not understand augmentation or permanent damage caused to D1 receptors.In your case, refractory RLS, if iron infusions don't help, then low dose opioids are the only solution.

I would consider writing to the RCGPs setting out your experience and saying it is clear that GPs are not up to date on RLS treatment and research and it is unacceptable.

I feel so angry on your behalf.

[Madlegs1 in reply to Joolsg]

Me too!😡

[Whymelord in reply to Madlegs1]

Hi Madlegs,may I ask what the help re.RLS is in your part of the world, I'm in Derry in the North of Ireland, would there be anyone that I could go to privately?

[Madlegs1 in reply to Whymelord]

As far as I know, there is nothing in Ireland.

I have been incredibly lucky in getting opioids for pain relief for spinal reconstruction.

And that I was able to educate my ( now retired GP) about meds for RLS.

Sorry.

It is extremely frustrating.

[Amrob in reply to Whymelord]

I'm wondering whether you might be able to find a specialist outside of Ireland that might do telehealth/online appointments. The sticking point may be getting prescriptions filled.

[Whymelord in reply to Joolsg]

Thankyou Joolsg, what on earth do we do or where do we go,why is my RLS relentless every night and sometimes early evening as I get older, I'm taking Magnesium, gentle Iron plus vitamin c,don't drink alcohol (love love a glass or 2 of red wine😥) alas not in a long time,I feel I eat healthy enough ie.no processed foods and STILL no ease.at 78 years old I was hoping to have a nice time in the Autumn of my life.🙏

[Joolsg in reply to Whymelord]

I started a campaign in 2019 to try to get RLS taught to doctors during university and GP training. I have also written to Clare Gerada, Head of RCGPs.

The official response was that GPs do not need to be taught anything about RLS as they will be able to look up RLS and treat fully in accordance with NHS and NICE guidance. Of course we know they don't. Also, NHS and NICE guidance is out of date and still lists dopamine agonists as first line treatment.

As Shumbah suggests below, it may well be time to name and shame all the doctors who have treated RLS patients so badly, BUT they will simply say they are following NHS and NICE guidance.

We all know from our research that iron infusions work for the majority and that low dose opioids are necessary for refractory RLS, but that knowledge hasn't filtered through to the UK medical profession.

Something has to change, and soon.

[lidoplace in reply to Joolsg]

I am afraid that this situation is the same for many chronic conditions such as thyroid disease and at the bottom of the intransigence is the economic cost of better up to date knowledge. All Nice guidance is based on the cheapest treatment irrespective of its effect. They do not factor in the endless searching and testing that patients are put through or the loss of taxes caused by people unable to work .

[pennygates in reply to lidoplace]

I know lidoplace, I have RLS and ME, and have found the same problem. When my ME was diagnosed (after great struggle), in the the 90s, . I met up with some disgusting medical attitudes . I still see disbelief and dismissive reactions today , despite more recognition of the illness.

[Shumbah in reply to Joolsg]

It makes me wonder Jools with doctors like that if a quite few of us should bombard them with our stories and our success to shame them .

Perhaps we should correlate all our stories and publish them

It’s absolutely disgusting

[SueJohnson]

You might try the Pain clinic in Tallaght hospital Dublin, Ireland. Camilus Power Head of the Dept was the consultant. This was recommended by someone on the forum.

[Whymelord in reply to SueJohnson]

Thankyou SueJohnson.

[TheDoDahMan]

Damn, your situation makes me mad! It's just unconscionable that in this day and age a 300-year-old disease is treated so poorly.

[Kakally]

Ditto everything Joolsg said. It is so inhumane , ignorant and unkind . Disgraceful…..😢🤬🤗

[Jumpey]

Appalling treatment. Could you afford to see a neurologist privately?

[Whymelord in reply to Jumpey]

Hi Jumpy,well I really think that's my only hope but not sure of the cost of going private,not sure how I could find out

[Jumpey in reply to Whymelord]

Others on here have consulted a neurologist called Walker by telephone. He seems to have a positive reputation you could ask for some feedback and enquire as to the cost.

[Munroist in reply to Whymelord]

I’ve just got an appointment for week after next with Dr Robin Fackrell at Bath. It will be £265 for the initial consultation . I’ll update the forum with the outcome. I’m hoping to get a referral for an infusion which will be a separate chargeable treatment probably.

[Whymelord in reply to Munroist]

Hi Munroist thankyou for your reply, I wish you all the luck in the world and pray you get a great outcome from this.🙏