Daily Mail on RLS

[m1946]

Recognition of this horrible condition finally published in the main UK press!

Without doubt a Dr Spinks mentioned in the double page spread article will recive many requests for help! From a personal perspective I can vouch for the understanding of RLS by the neurology department & sleep clinic of Guys & St Thomas's hospital also mentioned in the article. Via Health Unlocked a member mentioned this sleep clinic to me and I found for the first time a NHS doctor who was not only knowledgable but supportive.

But (there is always a but) it took a lot of persuasion for my GP to write a referral letter which was accepted much against the negative thinking of my GP who of course knew nothing of the condition.

For those who appreciate augmentation I was able to wean of Ropinirole and I am now taking 100mg of Tramadol each night allowing me 6 to 8 hours sleep most nights.

[markland]

Hi

My husband has a big problem with RLS and can no longer take Lyrica which did help for a bit.

Your post is helpful as I didn't know about the sleep clinic at Guys and St. Thomas. Have they given you anything except Tramadol and can you advise to whom at that hospital the G.P. referral letter should be addressed.

Many thanks

[m1946 in reply to markland]

HiI was referred to the Sleep clinic and a Dr Murpjy responded. A very informative and knowedgable chap

He was ok with 100mg of Tramadol but also recommended if it suited me to take Zopiclone 3.75mg if I thought it necessary to take a 2 to 4 week holiday from Tramadol.

The address on the letter was Sleep Disorders Centre, Nuffield Hse, Guys Hospital, Great Maze Pond, SE1 9RT

(020 7188 3430)

Hope this helps

[Kaarina Administrator in reply to m1946]

Thank you, m1946. I shall add his name to my very small list of sleep clinics and doctors that members have found to be very helpful and knowledgeable. .

Is it Dr Patrick Murphy that you are referring to please?

[involuntarydancer in reply to m1946]

Be careful taking zopiclone if your rls is not under control. The rls symptoms will prevent you from sleeping irrespective of how much zopiclone you take (zopiclone doesn't address the rls symptoms) but the drowsiness caused by the zopiclone may make you more prone to accidents or falling asleep while standing/walking. This happened to me more than once.

[markland in reply to m1946]

Thanks that's very helpful

[Craftyfox]

I have been on Ropinirole in one form or another ever since I initially began to suffer from RLS. Mostly I self medicated within the parameters my neurologist established. It was one mg tablets scattered through out the day. As my condition progressively worsened he put me on the Ropinirole 6mg long acting dose. He actually started with the 4 mgER. I added the one mg only when I could anticipate a problem - riding in car, going to the movies, or lectures etc.We have adjusted the times I take it and I mostly get relief this way. I also take 300mg gabapentin - one at four and three at bedtime as well as .25 clonazapam. This is all working for the most part and I am keeping my fingers crossed that it continues. Hope this helps.

My case is extremely severe and any med that offers relief I am willing to put in my arsenal! I might also add that the need to have a bowel movement affects my RLS causing it to become more severe. I have spent many days and nights walking in circles around our house. No one can even imagine the discomfort unless you have experienced it.

Good luck and God bless

Craftyfox

[wildlegs]

Hi from the USA. I've had RLS for 30 years and have taken many different drugs. Finally a pain doctor in Ft Myers, FL gave me Tramadol to try. After five years of different doses we found that 200 mg worked the best. I was on that for five years and it worked great. BUT we decided to move to Wisconsin to be near Great Grand Kids (I'm 77) and I couldn't get anyone to prescribe Tramadol ( an opioid). After a horrible six months I found a pain doctor who would give me Tramadol. Unfortunately she determined that I didn't need 200 mg and only would give me 150 mg. It is better but I usually get 5 or 6 hours sleep I"m trying to convince her to give me the 200 I"ve was taking but it seems to be a up hill fight. If only the doctor had RLS for a while so she would understand but until that happens I'll keep trying to get her to give me what I require. The sad thing is Tramadol wasn't considered an opioid six years ago.

[Poe7]

If you are not already aware, Tramadol also can cause augmentation so please be aware in case your symptoms start to get worse again. So the same as with DA meds, don't increase the amount your taking if this happens. I was on it for over 10 years before I realized the reason I have severe full body RLS 24/7 was because of the Tramadol I was taking. I got up to 400mg a day, the max dose, and was still having symptoms all day and night. The treatment my neurologist used is methadone. I slowly decreased the Tramadol over a 2 month period and slowly raised the Methadone until I was up to 5mg twice a day. I'm still taking the methadone. And my RLS is 98% gone. Just wanted to make sure you know about it so you don't get into the same predicament I was in.

[m1946 in reply to Poe7]

HiI have been told categorically that Tramadol cannot 'cause' augmentation whic is the preserve of Dopamine Agonists per the neurologist at Guys

[LotteM in reply to m1946]

Unfortunately that is not true. Drs Allen and Earley from Johns Hopkins published a small note several years ago to publish that they encountered at least 4 RLS patients on tramadol experiencing typical signs of augmentation. They explained that as tramadol works on the dopamine receptors, like the dopamine agonists, this could be the explanation.

If you want a link to the paper/note, let me know and I'll look it up.

[Poe7 in reply to m1946]

Yes, LotteM is right. I went through absolute hell from Tramadol augmentation. To the point of almost "un-lifing" myself. Please look at the research and just keep and eye out for worsening symptoms. I would hate for someone else to go through what I did for so many years. 😊