Two questions concerning RLS

[bedith6]

1.For the past few months l have had horrendous bladder pain and l can no longer cope with that and the RLS. I am making an appointment to see my GP who knows nothing about RLS so l need some advice about treatment for the bladder pain which won’t worsen the RL S. l would be very grateful if anyone knows the best treatment to suggest to the doctor.

2. I am taking 1.4mgs of buprenorphine which unfortunately still doesn’t completely cover my symptoms of RLS. I have found though that if l have the ACCORD brand then l get much better cover. For some reason l am rarely prescribed these and more usually am given MORNINGSIDE which are useless or TEPHINE which is a little better but not much. Does anyone else find this difference and is the ACCORD harder for the pharmacy to obtain? Every month l ask for it but it usually isn’t prescribed. Thank you in advance for any advice and help,

[Joolsg]

For the bladder pain, I can only express my sympathy. I ended up in A&E with it last Christmas and the doctors confirmed it was severe bladder spasms, triggered by my MS and a UTI. They sent me away with no pain or spasm relief & simply told me to contact my neurologist ( who wasn't contactable as it was the christmas holidays). Anyway, I self medicated with pregabalin and my medical cannabis, as both can help with spasms and, luckily, it did help. I can only suggest you ask for a referral to a neuro urologist as they are more familiar with the different causes and treatment of bladder pain.

Like you, I find only Accord brand of buprenorphine gives me 24/7 cover. Morningside brand results in breakthrough RLS from 8 -10pm. I use a local independent pharmacy and became very friendly with the team. They now know that only Accord helps and they call their supplier, Alliance Healthcare, to ensure I get Accord. Once, when it wasn't available, they gave me a week of morningside and then called around other pharmacies and suppliers until they found Accord brand. They are my heroes.

If you can find a local independent pharmacy, use them and explain that Accord is the only brand that is effective.

Also discuss with your GP and ask if he can increase the dose to 1.6mg for when the Accord brand is not available. An extra 0.1 or 0.2mg may be needed.

I discussed this with the pharmacist and with my friend who is a nurse at a pain relief clinic. My friend said that she is aware of this phenomenon, and believes it's because we become sensitive to the particular brand ingredients. She says it happens quite frequently in her pain clinic. It could be psychological or there could be a tiny difference in the ingredients.

[bedith6 in reply to Joolsg]

Thank you for your reply Julie. Very helpful as always. I have now written to the GP to explain why l need him to actually prescribe Accord so l hope that will work. As to the bladder pain l am just drinking lots and lots of water but think l will have to try to see a specialist.

I don’t think l will be able to get an increase In medication because l asked some time ago and was told definitely no as l was already on an extremely high dose ( their words) l hope you have a joyous and peaceful Christmas. Best wishes Beryl

[FluteE]

I’m so sorry you are dealing with this.

I live in the US. I was diagnosed with Interstitial Cystitis several years ago. It’s commonly known as “bladder pain syndrome.” It feels like a UTI but no bacteria present in the urine. The pain comes from lesions in the lining of the bladder. I was given bladder treatments with helped that did not affect my RLS. I drink a lot of water and eat a low acidic diet to keep under control. I saw a Urogynecologist for this. I pray you find answers and relief soon!

[bedith6 in reply to FluteE]

Thank you for taking the time to reply FlutE. What was the treatment you were given? Wishing you a happy christmas

[ziggypiggy]

I also had bladder pain for a year that we could not find the cause of. My urologist finally sent me to a "pelvic floor" therapist where upon examination she theorized that my pelvic floor muscles were so tight they were squeezing in on my bladder area. After several months of treatment (lots of stretching) it resolved itself. I feel for you. It's a terrible place to have pain.

[bedith6 in reply to ziggypiggy]

Thank you for your reply. I now have a gp appointment so hope she can either send me to the right specialist or resolve it . l feel l am getting to the point where l can’t cope with the pain any longer.