Suffering from RLS

[williamghenry]

My name is William Henry I am 77 years of age I have suffered from RLS for many years Towards the end of 2022 I was coping with this terrible affliction reasonably well without medication

In mid Jan of 2023 I had keyhole surgery to remove a large Polyp Since then my RLS has got much worse My Consultant says it could be due to the Anthisthectic I had This is my feeling Last night and the night before severity has been 10 on a scale of 1 to 10

I haven't slept at all for three nights I feel totally washed out

My doctor prescribed Ferrous Sulphate a few months ago and took me off it when my Iron Levels improved slightly He won't discuss RLS with me as it is not on his radar

I am having another Colonoscopy in January and a SeHChat Scan after that

I am at rock bottom I don't know where to go

I would be interested in knowing if anyone else has had severe symptoms of RLS after an Anthestic and surgery

Thank you for reading my story and I sincerely wish anyone who suffers from RLS all the help in the world RLS is a condition which in my opinion is not on the radar of the NHS in the UK

Regards

William Henry

[ChrisColumbus]

Hi William. As you've previously heard here:

(1) most doctors, neurologists etc know little to nothing about RLS - it's not been taught to them - and many seem reluctant to learn anything which doesn't come from NHS/NICE

(2) anaesthesia and anti-nausea treatments can trigger RLS, but this is generally temporarily - but if you do have another procedure involving anti-nausea treatment explain your RLS and ask that they use Zofran which is generally safe for RLS. (BTW I've had colonoscopies and scans galore without additional RLS problems).

(3) other medications *can* also trigger/exacerbate RLS in some people: statins, diuretics, beta blockers, anti-histamines etc. This does NOT mean that you just stop taking meds: please come back here and list any prescribed or over the counter meds that you are taking and we can advise.

(4) were you/are you taking any drugs specifically for RLS - I can't remember without looking back through all your Posts and Replies,,,,

(5) Stress/anxiety can also be a trigger: are you taking anything for this, as again some medications can make RLS worse?

(6) Iron is very important in RLS and doctors do not know that RLS sufferers need more iron than average: ideally a ferritin level in excess of 100, preferably nearer 200. This doesn't necessarily cure 'RLS' but it helps the majority. You were hoping for an iron infusion: did this happen?

Your doctor stopped prescribing ferrous sulphate because your iron levels were supposedly 'normal' by his terms of reference: you don't need a prescription to continue oral iron supplementation - you can just go into any chemist or health food shop and buy ferrous bisglycinate - 'Gentle Iron' - it is not expensive. Your last iron readings reported here were very low, so you don't need to worry about iron overload at this point.

(7) hospital food can be poor, high in refined carbs/sugar etc, but again the effects are generally temporary: ongoing, you are best to avoid too much sugar, refined carbs, caffeine (although some benefit from caffeine) and in my case the artificial sweeteners in diet food/drink (particularly aspartame). Again, these things don't trigger everyone and this doesn't mean that you have to give everything up, just that you are careful. Being careful with food has completely helped some, but it makes no difference for others: it's always worth a try!

I'm sorry that you're suffering so much. My own symptoms have virtually gone because my iron levels are good, I avoid meds that trigger me, I avoid foods that trigger me, I take magnesium supplements.

[davchar23]

Dear William,

I am sure you will get more replies shortly when the forum gets up and running for the day but I thought i would reply to give you some encouragement.

I am 81 and live in west of England where the medical profession seem to think that RLS is less than a bad cold. i am working hard to change that opinion.

With operations i had the opposite situation in that I had RLS before a major spinal op but immediately after the procedure I was free of RLS which I believe was EITHER due to stopping other medications for a couple weeks (namely statins and blood thinners) OR that the strong dose of antibiotics used for the operation freed me of RLS.

RLS returned after abut 4/5 weeks and then I got DA augmentation which I am currently trying to resolve with my GP (and a consultant neurologist) but mostly with the guidance of the more experienced persons on this site

Kind regards

Davchar

[Dotmowatee in reply to davchar23]

I found a very good specialist in the South West, he was very educated in RLS and informed my GP who took everything on board. I then moved and changed surgeries in Plymouth and my new doctor knew a great deal about the condition. So there is hope.

[SueJohnson]

I agree with everything that ChrisColumbus said. One thing though. Ask for your recent ferritin number. You have a right to get it.

Were you able to get the full amount of pregabalin?

Have you asked for a referral to a neurologist who may or may not know more about RLS but may be more willing to listen to you and might read the Nice guidelines or the Mayo Algorithm?

Do list your medicines and OTC supplements. I am very knowledgeable about medicines and can tell you whether any may make RLS worse and may be able to provide a safe substitute.

[Joolsg]

Hi WilliamHenry,Last time you posted, you were on a very low dose of pregabalin and your blood test results showed you would benefit from an iron infusion.

As your GP seems unwilling to listen, can you change surgeries?

Are you on any medication at all now?

The anaesthetic would have worsened your RLS for a few weeks at most.

So, you now need an iron infusion and the right dose of medication.

I suggest you ask for an urgent referral to a local neurologist or a sleep clinic. Alternatively, if you can afford it, see a doctor privately.

Dr Jose Thomas in Wales is very good and will prescribe iron infusions and the correct medication.

Which part of the UK do you live in? We can suggest a specialist near you.

[williamghenry in reply to Joolsg]

Hello,I live on the borders of Suffolk and Norfolk in the East of England

I use Magnesium Spray on my body morning and night

I am also on Simvistation, Thyroxine, Folic Acid and Terbinafine

I take no other Medication

Thank you

Kind regards

William

[Simkin]

Hello William,I am 73 and have suffered from RLS since I was 40 and I can honestly say that joining this forum and being able to talk to others who suffer like we do and who UNDERSTAND has been the best thing that has happened to me.

The medical profession, in general, do not understand RLS and everything for me has been trial & error.

When I was 36 my doctor, at the time, sent me to St George's hospital, London, where they were doing research, as they thought RLS was caused by circulation problems. At least they now know it is neurological.

The help and advice I have been given on this forum has been second to none, especially from Sue & Joolsg.

They will give you marvellous advice but I just want to give you hope.

Firstly I absolutely agree you need to change your GP.

Secondly I have the most wonderful GP in the south of England who now actually says "what do your forum advise?"!!!

And to give you hope he actually gave a talk last week to the other doctors in the practice on RLS. Hurrah!

Thirdly do join the UK Restless Leg Society.

They produce a quarterly magazine, hold workshops and have an AGM every year with guest speakers.

So hang on in there. We all understand and yes there are many triggers.

Sleeping pills are a disaster and sadly when I have a cold I can't take night nurse as that sets me running about all night!!

Good luck!

[Simkin]

I meant to say I developed RLS when I was 33 not 40.