TO FIND THE ONE

[FLAME43]

Does anyone know if the Southend on sea area has any Doctor or specialist who knows about RLS, been on co-dydramol, prescribed over a year now, found out yesterday it is on the no list, this is the 4th wrong prescription. Desperately seeking better quality of life at 73 my the winter years of my life need help

[Pippins2]

Hi your nearest RLS experts would be in London which if my geography serves me correctly is around 50 ish miles from you? Would you like a couple of names for the London area?

Pipps x

[FLAME43 in reply to Pippins2]

dear Pippins2, thank you so much how kind, a list would be great

[Backtobasics95]

Hello flame,

This isn't really answering your question but I recommend you try the low fodmap diet. I've been doing it for about 3 weeks now. Wow. Very very promising so far. My right leg is about 90% calm, left leg 50-55%. It has been a slow process so far, with tiny improvements so far and lots of work put in for figuring out what to eat each day. But it is undoubtedly worth the drama. Here it is sir:

ibsdiets.org/fodmap-diet/fo...

[FLAME43 in reply to Backtobasics95]

thank you Backtobasic95, have looked it up and, cutting out some things so far, look forward to giving you good news

[Backtobasics95 in reply to FLAME43]

No problem, but remember, if you're going to try it, you have to go all out and cut all bad things out of your diet. Look forward to hearing from you in the near future about your results.

[Pippins2]

Flame

Dr K Ray Chauduri at

Kings College Hospital London Has a long waiting list

Dr Huys

Movement Disorders Clinic at

Institute of Neurology

University College London ( UCI )

X

[FLAME43 in reply to Pippins2]

you are so kind, Pippins2, will let you know how it pans out aftrer seeing my gp today, thank you so much

[FLAME43 in reply to Pippins2]

Hi Pippins2, submitted the names of the specialists you provided, sending me for blood tests (The iron one someone else suggested) and others, as i am sufferings back and leg pains, after results will be trying these names. changed some meds, stopped Statins, and so far so good, thank you

[Pippins2 in reply to FLAME43]

Flame make sure it is ferritin iron tested and ask for the actual number when you get results as they will say it is normal from around 10 but needs to be over 70 for RLS sufferers x

[lorrinet]

I have been on Dihydrocodeine for about 15 years. It has quite literally enabled me to go on living. Suddenly it is not working as well as it did - I need more during the night than I used to. But it has served me well for a long time and is still working, just not quite so well which perhaps I must expect now.

Ask your doc for Dihydrocodeine. Mine sent me to a specialist in RLS, in High Wykam(?) and he told her to give it to me. Thank God.

[FLAME43 in reply to lorrinet]

thank you Lorrinet, seeing her today and will be requesting just that

[FLAME43 in reply to lorrinet]

got the Dihydrocodiene, my second night now, what a difference, thank you Lorrinet

[lorrinet in reply to FLAME43]

So glad to help. The 'high' feeling won't last of course, but hopefully the effect on RLS will, as it did for me.

[Hidden in reply to lorrinet]

Hi Lori, have you researched the "ferrous bisglycinate" yet that numerous people on here have found relief with? It can be an add on. Some people get relief with the first pill and for some it takes longer. I take 25mg on an empty stomach at night when I have RLS. If you like it after a few nights you must discuss with your doctor. I always recommend that people take the bisglycinate before their other meds to see if they even need their other meds after taking the iron.

Ultimately, I think it is a luxury to just hope and pray that a substance keeps working. So I'm with Graham and trying to see if there might be offending foods in my diet that is making the RLS worse than it has to be. Of course there are also meds such as melatonin, 5htp, statins, HRT, calcium channel blockers, metformin, antidepressants and antihistamines that are known to make RLS worse.

Maybe you've become sensitive to salicylates in aspirin and in food that is making your RLS worse than it has to be? If we think that it's only the substances that are listed on certain RLS websites that can make our RLS worse then we fooling ourselves. Those listed substances are only the tip of the iceberg.

Good luck!

[lorrinet]

Hi tredlight, I have read about this here on the site and have an appointment with my GP to discuss it. Unfortunately I can't see her until the end of April as she is so busy, but she's the one I saw originally with my RLS so it needs to be her. Like all the female doctors in our practice she is only part-time.

[Flower-girl1]

Darling girl, what you need is Targinact plus pregabalin tablets. It is the only medication regime that has rid me from the extremely painful variant of RLS....inherited from my father (bless him).

I waited about 6 months to see Professor Chaudhuri at King's College London. He and his team were wonderful and I now have a telephone follow up appointment once a year.

If I miss one dose then the symptoms are right back...it's quite a daunting thing to think that I have this for the rest of my life. However, once I found the reason for my pain and inability to sit during the evening, let alone lie down at bedtime....I was able to go to bed and sleep and also to sit down and watch TV. It was fact during a night of walking around doing housework that I searched the Internet again to see if anyone out there was suffering like me, I came across the RLS UK website.

As I read through all of the stories I realised that some of them were just like me. My score of severity was 35 out of 40 and came in the very severe range. It seemed that a lot of the drugs I was taking were actually exacerbating my condition so I stopped taking them all. Fortunately, I had both Pregabelin and Targinact in my cupboard because I have at times suffered from Trigeminal neuralgia, so I started taking them and from that day on the miracle happened.

After the first week I printed off all the information from the website and went to my doctor and asked him for a prescription for Pregabelin and Targinact. He refused to prescribe Targinact because of the cost but he did actually prescribe Morphine MS Continus which works but makes me constipated. I take 5mg of morphine MS Continus plus 100mg of pregabalin in the morning and 200mg of pregabalin and 10mg Morphine MS Continus at around 7.00pm. This regime stops the unbearable pain that I experienced every single evening and night.

RLS took me to some very desperate and dark places...but for now my condition is under control. Targinact is actually licenced for the treatment of painful RLS. I hope this helps Flame43.

[FLAME43 in reply to Flower-girl1]

Flower girl, thank you so much, this is going to be printed for my next appointment with my GP, Your concise detail is fantastic, uplifting and gives hope. Bless you

[flower-girl]

Here are a few things I tried with a modicum albeit transitory success.

1) Covering my legs in very hot wheat bags. These worked whilst they were hot but would need reheating if I hadn't managed to fall asleep beforehand....which happened often. This method is still my "Go to" pain control method if I ever get out of sync with my medications (like right now, as I've just arrived in Australia for a holiday and my body has no idea what it's doing!).

2) Wrapping my legs with extremely large flexible ice packs. This worked well ~ the pain of deep freezing my thighs in preference to the pain of RLS. The ice would have melted by the morning but it would be time to get up anyway. It was VERY VERY cold!

3) I once managed to sleep and get some comfort with my legs in the air and at right angles to my body. I scootched my bottom right up to the headboard so that my head was where my feet should have been. It worked only once for me.

We are not alone in our suffering....and curiously that helps to know it's not just me seemingly "losing it" .

Big hugs 🤗

[involuntarydancer in reply to flower-girl]

Yes, legs in the air like you describe - that sometimes works for me also. I haven't heard of anyone else using it before.