Help info please

[Paula5]

Hi,people, it's been a while, but just wanted to ask if anybody else has been taken off there main pain meds , and told that they have to go to a pain cafè, so know I'm really suffering and the pain café doesn't even start until match, what even is a pain café, does anyone know

[Dizzytwo Moderator]

Hi Paula, I was just going to ask you what the heck is a pain cafe 🤷‍♀️ you sure they said cafe and not clinic?

May I ask did you get any reason why you had been taken off your pain meds?

Momo

[Dinkie in reply to Dizzytwo]

Morning Momo,

Pain Cafes seem to be all the rage in Cornwall according to a quick google! I thought pain cafes were limited to those places in Amsterdam! As they say you live and learn. Perhaps it's just the 2023 way of saying a pain clinic.

[Dizzytwo Moderator in reply to Dinkie]

Hi Dinks, well I have been visiting Cornwall for the last 30 years. October 22 been the last time and I've never heared the word pain cafe mentioned or come across one. Well never too old to learn lol xx

[Dinkie in reply to Dizzytwo]

more like a support group - found this info

The Coastal Pain Café is a local peer support group for people with pain. The aim is to create a space (sometimes in-person, sometimes online) for you to meet, learn and share tips and experiences.

Doubt they can offer any pain relief in the way of meds as the Pain Clinics can. Pain Cafe does sound less scary!

As you say we live and learn😜

[Dizzytwo Moderator in reply to Dinkie]

Just had a look. It seems it a 5 year trial run in Cornwall and the Isle of Wight. I think ill pass. A 7 hour journey is just out of my travel zone lol

[Dinkie in reply to Dizzytwo]

with a journey that long we would definitely be in need of some pain relief! somehow I don't think a cuppa would cut it. Think I will pass on that one too. Twenty minutes is just about my limit for a car journey. Enough to get me to work, traffic permitting.

[Themanwithnoname]

Pain cafe is a new one on me ill have a large coffee and a big fat bifta please. Only way you would see me there.

I dont even smoke but could be converted if it helped ease my pain. Our pain clinic offers group meetings once finished the coarse but it weren't for me as all i had in common with them was pain and it was nearly a half hour drive. I still read the news letter and still need my meds.

Whilst it were not for me I'm sure others would find it beneficial.

[SlothMode]

Hiya Paula,

I'm so sorry as that sounds drastic to just stop your meds! Hmm a pain cafe.... sounds a bit better than a Pain Clinic lol! Maybe u can order a coffee n a huge slice of cake with a side of pregabalin 😂😂 Gentle hugs 😊🤗

[Tiswot]

please go back to your GP. Pain can be treated many ways but meds are definitely part of the toolkit.

[Al10]

Sounds like another money saving, kudos grabbing initiative, from the same organisation that doesn't give a ... Whatever?

However, I could be wrong and it could be a wonderful sociable have your cake and eat it, alternative to swallowing poison for relief.

Just recovering from a rather alarming reaction to OTC meds. Thank heavens for Google because the directions sheet did not warn about this! The super wonderful online 111 thought I should either, Dial 999, or when I tried different, but equally inaccurate multiple choice answers to their stupid inane questions, they thought I should talk to the local pharmacist. Duh! Why didn't I think of that?

Oh wait a minute, I did! Only their Chemist Pharmacist was, as usual, MIA. And the one in the next town, I phoned refused to speak with me direct, (too busy!) so I got as much info as the dear assistant could bear to keep pestering for. (not much!) Did she convey what I asked? Who knows? Anyway she said, he said I should go see my GP in a few days time for reassurance. Or dial 111 straightaway if I was worried about the worrying symptoms?

So given online 111 had told me to dial 999, (and I wasn't sure I wanted an emergency) I decided to dial 111. because I still wanted to know when the worrying side effects ought to wear off? And when I actually ought to worry? Google was quite certain there was cause for worrying sometimes! Like some folks do actually die from this sometimes? And so, I dialled 111, and after being told to ring 999 if things were urgent, 111 asked me to press buttons, and at the end of the endless button pressing, I was informed, they were experiencing unprecedented... and that 111 only speak to actual urgent cases.

After that I figured if I was dying, I better not waste any more time trying to get help but to make use of whatever time I had left. Hard to believe the NHS like to call them selves professionals and ever harder that anyone still actually believes them.

[BonnieMagic]

What a sorry tale and an awful experience for you. I’ve never had a good pharmacist experience either. As you say they’re either not there, too busy or inept - once I was told my shingles rash was a sun rash.

[Jaxie64]

Hi Paula5

I haven't been taken off my meds, but I have had to cut the morphine dose down. Between the pain clinic and GP, I have had to reduce my doses to their satisfaction. It has to do with new orders from (medical top dogs) who decide the safe dosages for medicines.

I was just referred to the pain clinic by a GP in our surgery after she said I had to bring my dose down to the acceptable level. I didn't have a choice.

I have heard this is happening all over the UK. Has this happened to anyone else here?

[BaffledKaffy in reply to Jaxie64]

Jaxie64 ~ I would be most interested to know what your new acceptable level is (if you don’t mind sharing?). I’m on morphine sulfate IR, and prescribed 30mg pills, to be taken 3x a day, tho I often need/take less and reduce my own dosage.

However, I’m in the U.S. and would like to be prepared if a decrease of the “acceptable” prescribing levels may become a worldwide effort … and then minimize my access to pain relief.

[Jaxie64 in reply to BaffledKaffy]

Hello Baffled KathyI used to take , 140 mg of Zormorph a day. Thats 70mg every 12 hours.

The acceptable level is 120mg a day now. So I now take 60mg in morning and 55mg in the evening. So far I am doing OK. The pain clinic has discharged me because I got my dose down.

I also take 900mg of Gabapentin a day, also Oramorph when needed. When I am in a lot of pain.

4 x 500mg of paracetamol a day

And other stuff.

I hope that information is useful to you.