Hi all. Haven't been here for a short while due to hospital and scan's. Also trying to just cope with this horrible RLS which none of the Dr.s seem to take seriously here. Also having a verbal admission that our Pain Clinic don't look at a ' whole ' Xray but only focus on 1 area which is why they ignored the tumour on my right lung for 15 month's which was in the upper right lobe. They were looking below my lung's....didn't raise their eyes up the Xray. This admission hasn't done anxiety or my temper any good and now this hospital has made another ' error ' which has resulted in the rls going beserk! I'm up most night's and I posted before that my Dr. put me on Baclofen which has done nothing. I used to get restless leg's periodically until I was in hospital about 3 month's ago and had an allergic reaction to antibiotic drip's and they sent me home with no treatment. Then a couple of day's later my leg's got so much worse which is when I posted here. Those who replied were so supportive and I'm so grateful to speak to people who understand what a horrible thing this is and so painful and now my toes are cramping and my calves are in agony. I have found compression sock's helpful and even, sometimes, have to wear them in bed but is it safe to do that ? I am going to phone our Surgery tomorrow and tell them I am going to stop the Baclofen. No point in taking chemicals that don't work. I, also , have to make an appointment with the Pain Clinic which should be interesting as I was angry about the admission about my cancer and almost got a verbal apology! I'm not the kind of person to sue other's but I am extremely upset and angry about this but the NHS aren't good with apologies I have found! Too scared of litigation but I have asked that they review the way they look at Xray's .
Enough ranting ! I find that the majority of medic's don't care any more especially when you get to a certain age. Take care all. x
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Danni54
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Hi again Danni,I suspect that opioid withdrawals might be causing your RLS.
You are already on fentanyl patches and oramorph, both of which should cover your RLS. So I can only guess that some sort of opioid withdrawal is happening.
Hopefully the pain clinic will review all your opioid meds to ensure you are receiving the correct, steady dose over 24 hours to relieve the RLS.
What dose of fentanyl and oramorph are you taking? Did you buy some symprove probiotics to try to heal your gut? And did you contact Prof. Walker or Dr Jose Thomas?
Hi Jools. The Opioid withdrawal could still be from when they stopped the Dipipanone and Cyclizine which I had been on ...off and on for 30 year's and then 3 times a day since the lung cancer 6 year's ago. I was waiting for my prescription, had 6 day's left and was told that the NHS weren't buying any more. I wasn't given anything apart from the 12 mcg Fentanyl patch and went into horrific withdrawal for 9 day's when the Dr. then prescribed Oramorph but only 10 ml a day ! This was for the fracture's and my stomach pain which is severe. That was about 8 month's ago so, surely the withdrawal from the Dipipanone would have stopped by now ?As for the Pain Clinic...that visit caused me to crack up a bit and make me even more angry about the tumour because the Physio admitted that they don't look at the overall Xray but just at the area they are concentrating on. That area, at that time, was under my rib's...referred pain . I said...the tumour was in the right upper lobe and 15 month's later when I saw the Xray, even I could see the tumour so how could they ignore it ! I was so upset that she decided I have PTSD and need to see a Psychiatrist! They are useless and it's their fault that I have been left with a half life. Sorry...still angry ! I have a phone appointment on the 15th with a Specialist Nurse but I am , completely, past having any hope in anybody from the Pain Clinic!
Having RLS when you're in incredible pain anyway is not good. I'm just exhausted as everybody is who has this . My calves and toes are so sore as is my back and tummy. Had 3 major ops on my stomach when I was 32 - 35 because of Endometriosis so I have gone through a lot of medic's who say thing's are in my head , including when I had cancer! I could write a book ! So fed up with it all though.
This is a long reply....so sorry! I haven't contacted anybody else because I have been having scan's etc. on my Colon etc. I will though but I'm self conscious on the phone because the cancer has affected my voice badly. Will let you know what happens. I'm exhausted after being up all night. Thank you , again, Jools . Please take care. All the best, Danni
The rls got much worse after my allergic reaction to antibiotics when I was in hospital and they sent me home with no help and our Surgery was closed for 3 day's. The Nurses in the hospital told the on duty Dr. 5 times about the reaction but he ignored me despite the red rash from head to toe. The Nurses were horrified! The Discharge letter was wrong as well! Anyway, I still have spot's all over my leg's from that wonderful experience! Then the rls went out of control. Have you or anybody else heard of that happening?
Yes - you can wear your compression socks at night.
I gather the oramorph didn't work. Did you take enough of it. According to the Mayo Updated Algorithm on RLS the usual effective dose is 15 to 45 mg. And it only lasts 4 to 6 hours so needs to taken every 4 to 6 hours to avoid mini withdrawals.
Thank you again Sue. I didn't know that about the Oramorph and the Dr. said that I can only take 10 ml a day! They keep a tight check on how much I take. I didn't even know about mini withdrawals and wondered why I have been getting creepy withdrawal symptoms all over my body. He , also , told me to keep taking Baclofen because it takes a while to work even though I told him it was doing nothing! I am going to phone the Surgery tomorrow to tell a different Dr. that there is no point in taking them. Why do medic's think that we are stupid and don't know our own bodies ? I'm not medically trained but they have put me through hell for year's and I am fighting back. It's all so exhausting tho' ! Thank you so much Sue. You have such good advice and knowledge. Take care please.
Print out the section on opioids that shows the usual effective amount of morphine which is basically what Oramorph is of the Mayo Clinic Updated Algorithm on RLS Https://mayoclinicproceedings.org/a... to show your doctor.
Or better yet as Joolsg suggested as for buprenorphine which lasts 24 hours.
Thank you Sue. When I speak to one of our Dr.s I intend to make sure that they know that I have been researching RLS and that I am fed up with being fobbed off but I will print it out and give it to him with the information from the Society! I am so sick of not being listened to and being treated as though I don't have a brain! Too tired and I may look my age now but I have some fire left ! I am, also, going to ask about Buprenorphine. Enough is enough! Sleep well and thank you for all of your support.
Danni,I honestly think you need to see a doctor who knows about RLS. There aren't many and the good ones have a long waiting list.
But Prof Walker or Dr Jose Thomas might be able to help. Both do phone consultations.
When you're stronger, you should also consider legal action for the appalling treatment youve received so far. Of course you have PTSD! All caused by negligence.
I suspect you would do well on a long lasting opioid, like Buprenorphine or methadone. Buprenorphine has a long half life of 24/25 hours, so will not cause the mini opipid withdrawals that seem to be driving your RLS. The Buprenorphine, at the right dose, would also cover your pain issues.
Thank you so much Jools. I got a bit teary reading your post because you have given me hope and I haven't had that for such a long time ! I will phone the Professor and Dr. and let you know what happens. I have joined the RLS Group and received information from them to put into our Surgery which I will ask my friend to do as I had to give up driving. I have, also, been thinking about contacting a Solicitor and I did do that with Digby Brown but they don't or didn't deal with issues where I live ! My friend's are encouraging me to do that though my husband is sceptical! I'm not and after the admission from the Physio....! Unfortunately, no witness! I have kept every letter from before my cancer so I need to get my stubborn determination going again because that has been fading! The Physio asked me what I wanted moving forward so I said that I wanted for the Pain Clinic to tighten their practices and when they look at Xray's they look at the whole picture so that nobody, EVER, goes through what they have put me through. She said that she would speak to her boss and I would hear from them. That was about 5 week's ago! Nothing! I'm so exhausted and hurt all over...and I have always hated moaning and now look at me ! I just pray for 1 night's sleep.
Thank you Jools. You are a special person! You and Sue and other's here have been so kind. Don't know what I would do without this forum...and the fact that you let me grumble! Will stop that and let you know whether I get anywhere with anybody. I hope you sleep well tonight! Very best wishes.
I cannot add much to the excellent advice of Jools and Sue J except to tell you a bit of my story. It is odd that simply knowing that others suffer from severe RLS and get frustrated by the response from UK medical practitioners, helps me and I can see from your posts, you to.
I recently gave my new GP a list of the nearly 20 medications that various doctors/consultants have prescribed, in vain, over the last 6 years of my RLS. This GP was more receptive and seems willing to accept that whilst he has to stick to NICE guidelines, that one needs to carefully plan how you reach a workable RLS medication formula
I am trying with Jools , Sue and others on this forum to try escape from DA augmentation and damaged dopamine receptors (caused mainly by rotigotine) and my current "package" is:-
Oxycodone/Pregabalin and probably eventually a change to Buprenorphine as well as using ferrous bisglycinate to get my ferritin up from 40 to over a 100.
So be strong with your General practitioner and be sure that he/she knows you accept they cannot be experts in all issues. They will know that the NICE guidelines are to say the least "thin"! In other words keep up the rant and good luck
Thank you so much for all of that. I have had more help and support from this and the lung cancer forum than from any medical person. I am so sorry that you are going through augmentation which I've read about. I wish that I could go back to how I felt before the cancer but that's not possible but I am known as a stubborn person so, I know that if they would get my pain and rls under control that I could build up my strength...to a degree. If they hadn't left me with a tumour for 15 month's with no treatment I wouldn't be as ill as I am. I'm so grateful to Jools and Sue who have been so kind and now you as well. See how lucky I am! Please take care. All the best. Danni
Hi again Jools. Well...I have just spoken to a new Dr. who was very helpful and looked back through my record's and saw that I had been put on Buprenorphine in 2011 when the horrible Pharma Company stopped Diconal with no warning. Shame that the medic's didn't put me on that when they stopped it again and put me into instant withdrawal a few month's ago! This Dr. won't give me Buprenorphine because I am taking 5 ml Oramorph and have the 12 mcg Fentanyl and she said that they would have to be stopped and she doesn't want to do that . I have to have a blood test on Monday to check my Ferritin level again because the last test showed Ferritin of 36 but she said it needs to be over 50. I thought it needed to be a lot higher. It started at 14 a few week's ago so it is going up, slowly! Vitamin B12, plus a couple of other thing's. I will put in the RLS information sheet's and card's when I'm at the Surgery. She was horrified at the verbal admission by the Pain Clinic about my tumour lack of diagnosis! I will let you know what happens. I looked up the 2 expert's that you told me about and I will get their advice. I am exhausted just now and the pain from my spine and stomach have gone crazy. My fracture pain is getting worse. Apparently the spurs on my spine are digging into my nerves ..lovely. No help from the medic's for that either! At least this Dr. is listening and checking my blood which should have been done after the Campylobacter which was vicious and my inflammation marker's then were scaring another Dr.!
Thank you, again, Jools. Your knowledge and understanding and Sue's, have helped me to find hope again. I wish that I could meet you both and everybody who has been there for me because you are helping to keep me going and I had , almost, given up. Please take care. If I'm up again all night then I will be back tomorrow to rant at TheDoDahMan who has , also, made me smile. Thank you all, so much.
The doctor is correct, you can't add Buprenorphine to EXISTING opioids as Buprenorphine will displace them on the opioid receptors. But, you can REPLACE the existing fentanyl patch and oramorph with a dose equivalent amount of Buprenorphine. In your case, the Buprenorphine patch would probably be better to cover RLS AND the pain. For RLS, serum ferritin needs to be above 100, preferably 200, according to the top RLS doctors in the USA. Some, like Kakally, only respond when serum ferritin is above 300.
It's really not acceptable to leave you in constant, uncontrolled pain.
I really hope you find someone who will really listen and device a medication plan to cover your RLS and the nerve pain. Medical cannabis really helps nerve pain. But it's expensive.
We all know how debilitating this foul disease can be, so we all try to help each other.
One day, doctors will actually have to study RLS on the curriculum and learn how to treat it effectively.
Hi again and thank you for that. I might very well rant again!! I never used to be like this but even a Dr. I just spoke to was shocked at what I have been put through! I hope that the Methadone is still working for you and I think people need to know that Methadone is used for other purposes rather than what it is linked to. An explanatory booklet needs to be put to all Pharmacist's everywhere! Good luck and sleep well!! Best wishes, Danni
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I have ulcerative colitis, I'm vegan and I also think I have RLS but I can't easily see a doctor
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Best private RLS consultant(s) in U.K.?
Looking for advice, yet again, please.
