Back again!

[Danni54]

I have been quiet for a while because I have been in so much pain with the fractured vertebrae and my leg's although they have been helped by the Buprenorphine 0.4 mcg Sublingual tablets. My Dr. prescribed 3 a day but I usually have to take 4 because my RLS isn't just at night. Also, the more pain my back is in the worse my legs get . I do tend to overdo things at times because I get so frustrated and angry with myself....and the medical profession! I had a bad fall in the garden last week but by some miracle I didn't break anything! The left side of my face connected with a stone slab as this happened by our small pond ! The bruise is going though!!I have been so frustrated with our Dr.s especially when I found out that the waiting list for my Neurologist is 2 years ! I had seen him about 10 years ago for a tremor in my right hand so I decided to write to him because I have been told that there are nerves trapped in the fracture which could be contributing to the RLS. People were sceptical that I would hear back from him but I have and he has referred me to our Chronic Pain Team . I have no faith in them because they ignored for 15 months, a lung tumour they had on an Xray ! Long story! Anyway, I have agreed to go BUT he has suggested that 1 option for the RLS is to try Rotigotine Transdermal patches! Why oh why do the medical profession not keep up to date with RLS treatment because I gather that this is one of the medication's which can cause augmentation. Would Jools or Sue let me know how bad they are please?

I have just rejoined the RLS Society and Debbie has been lovely and so kind and informative. Which brings me to a HUGE thank you to Jools for working so tirelessly on our behalf. I seem to be having a problem posting this so I will be back...again!

[ChrisColumbus]

See Sue's response against your later post, and this video which Jools frequently links to:

youtube.com/watch?v=Tz7g9sx...(Not working as expected?)

[Joolsg]

Oh Danni.What can I say?

Yes Rotigotine is bad.

UK neurologists are all under the delusion that it is fine. There was a paper in 2011 by Oertel and Trenkwalder saying Rotigotine didn't cause augmentation.

It's 14 years old. Well before the true extent & scale of severe drug-induced worsening was realised.

Dr Berkowski, a top world expert explains why they are SO wrong.

Do not touch another DA. Augmentation will happen quickly and worse than before.

Here's the video.

Tell this 'neurologist' and update his knowledge.

Can you tell us his name so others can avoid him?

youtu.be/Tz7g9sxS0_I?si=-IL...(Not working as expected?)

[Danni54 in reply to Joolsg]

Hi Jools. Thank you again! I will message you later as I'm exhausted having been up half the night with the pain . I think that everybody here should join the RLS Society and then we should all, simultaneously, send posters and information to our Dr.s and maybe then some of them would take notice of what medication is going to make us worse ! Maybe not ! More later. All the best xx

[Joolsg in reply to Danni54]

Sleep Danni. Whenever and wherever you can.Xx

[Danni54 in reply to Joolsg]

Hi Jools. I wanted to let you know that I have absolutely no intention of taking any Dopamine Agonists and I am going to print out more information from the RLS Society and give it to the Neurologist, the Dr.s and the Chronic Pain Team. I am going to phone our Surgery tomorrow and make a face to face appointment with my Dr. if I am allowed to because I am sick to death of phone appointments! I fully intend to growl ( politely ...ish !!) because they and the Pain Clinic have made so many dire mistakes with me and I'm sick of it. I will get more information from the Society again and make him read it in front of me ! I'm lucky to be here after the lung cancer fiasco, it's a good job that I'm stubborn and a fighter but I am getting tired!I hope you don't mind but I will message you about a couple of things. I , honestly, don't know what I would do without you and without the support of Sue and others here. I will photocopy the RLS information and I intend to send them to every Surgery here and our hospital. I need to find an RLS Neurologist in Scotland although it will be difficult to travel but I will find the strength from somewhere!

Did I tell you that when I saw the Orthopaedic Consultant he said that I have had too many birthdays?! This was his way of telling me that I have quite severe Osteoporosis! It shows what we have to cope with in the North of Scotland!

More tomorrow ! Thank you for being there for me Jools. Sleep well! 💜 xx

[Joolsg in reply to Danni54]

Good for you Danni! The anger keeps us going.Islay just reported earlier that she had received good care from Dr Graham Mackay at Aberdeen Royal Infirmary.

He may be able to help in the future on the RLS side.

Clearly orthopaedic pain is an added complication. Opioids often become ineffective for pain & you end up taking higher doses. Tolerance develops.

That's why I mentioned medical cannabis. Adding that to Buprenorphine might control the back pain & help settle the RLS.

Bloomin eck! It's no fun getting old is it?

My lovely MS neurologist has told me she is discharging me now. I've just completed a final round of a chemotherapy drug that is used to rest my immune system. And as they will never give me any other meds- it's pointless giving me MRIs or further NHS appointments. I've been put out to pasture. Stay strong & stay angry. The rage keeps us sane.

😂

[SueJohnson]

I am so sorry for everything you are going through and the ignorance of your doctors.

[Danni54 in reply to SueJohnson]

Thank you Sue. I have tried so hard to get them to find out more about RLS but they don't want to know! Just now I am so tired that I'm getting very depressed and that is not like me at all . I will give myself a kick and pull out of the big black hole and keep fighting to be heard. Thank you so much for being there for me and for everybody here.

All the very best xx