Pain team meeting- few questions for everyone x

Well finally after waiting for this for over 6 months I’ve had my meeting with my amazing pain doctor.

So now I have the diagnosis of the hypermobile ED my only choices are St Thomas , St Thomas or St Thomas lol so looks like that’s where I will be going for now for my treatments.

He wants me to have a meeting with some different consultants there and then do the three week in-house pain management, which really sucks as being away from my baby for three weeks will be the worst thing I’ve ever had to do.

Also if those don’t help I’ll have to have a wire in my spine to help block my pain. But my doctor really is great and I trust his judgement so I guess I’ve just got to wait and see now, I feel positive in the fact that my treatment is making a huge leap forward.

I’ve been prescribed clonzapain or something does anyone know if that’s any good??

Has anyone else been there to St Thomas and done this does it all help?

Thanks

[Bananas5]

Haven't been but Curlygirl has just done the 3 weeks. See if I can get her to tell you her experiences.

She did go home each weekend. Told me she found it very good especially with the others there. A lot of tears early on as she faced up to why she is like she is and it won't get any better. That is called acceptance...a stage many never reach.

Let me find her.

x

[Hidden in reply to Bananas5]

Thank you so much. Unfortunately I couldn’t go home at weekends as travel is impossible I will have to have hospital transport there and back as it is and couldn’t have that at weekends and I can’t physically sit in a car for that long.

It’s so far away from my house and everything it’s a huge pain but if it helps them I’m all for it xx

[Bananas5 in reply to Hidden]

Certainly Tommy's is the best so definitely worth going it you can.

They do shorter courses but no idea about those.

Messaged Curlygirl but she is working but sure will reply.

She too struggle to get home weekends and lives fairly close. But let her tell you.

x

[Hidden in reply to Bananas5]

Thank you pat xx

[morphalot in reply to Bananas5]

They don't do shorter courses now. They used to do A2 and A4 week course but they have m merged into A3 week course

[morphalot in reply to Hidden]

I had hospital transport each weekend to Shropshire and back - they want you to do it. I have a stretcher vehicle because I can't sit in a car

[fibrosucks2]

Hello,

I am looking for a good pain clinic doctor - can you recommend the doctor's name please, even if you just drop a PM.

Unfortunately had very bad experience at St Thomas's - they had a go at my medication including clonazepam.

[Hidden in reply to fibrosucks2]

I’ll pm you x

[fibrosucks2 in reply to Hidden]

Hi, I can't PM you - it doesn't let me. Yes I'm willing to pay privately to see him, could you give me a name ?

Bad experience as they wanted to stop all my medications, didn't offer anything as I'd already been to a specialist centre and a pain course. Refused to offer psychological therapy, and said no to scs. Basically a waste of time.

[Hidden in reply to fibrosucks2]

Sorry you had a bad experience why did you go to the pain team?

Did you do the full 3 week course?

I don’t want to write the name over here I’ll pm you , are you in the sussex area then? As you have to be within the area

[morphalot in reply to Hidden]

You don't have to be from the area ,- I'm from Shropshire and went to st Thomas

[Hidden in reply to morphalot]

I was talking to her about my pain doctor in Sussex not the St Thomas x

[morphalot in reply to Hidden]

Ah sorry bexamy!

[morphalot in reply to Hidden]

You can pm me if you like - I'm about to go to st Thomas again for 3 week course, and already have the implant

[Dexter1]

Do you mean Clonazepam? If so that’s a benzodiazepines usually given for anxiety or sometimes muscle spasms.

[Hidden in reply to Dexter1]

Yeah that’s what I mean I spelt it wrong lol

[Dexter1 in reply to Hidden]

No problem!

[morphalot in reply to Hidden]

They don't make you come off your medication. A qualified nurse goes through it with you and advise you which ones you could try to come off which is better for you in the long run. If the needs work and you don't come off them there's little point in having an implant!!

[morphalot]

I've had it done at st Thomas. You won't be away from your baby for 3 weeks as they want you to go home every weekend to practice some of the strategies they have taught you. You then get a trial implant. Of that goes well they take it out and put the permanent one in. You don't feel it inside your body although there are 1-3 wires lying next to the troublesome nerve. Since I got my permanent implant last march I have stopped taking pregabelin, tramadol and amitriptyline. I charge the battery in my back every day for about 40 minutes. The 3 week course is very necessary as you learn a lot about what you can do yourself to help you through the pain. Any questions? Just ask and I'm more than happy to answer x

[Hidden in reply to morphalot]

What so I would have to be in ambulance for 3 hours on a Friday and 3 hours on a Sunday for all three weeks that’s a lot and transport doesn’t work like that down here doesnSt Thomas have their own transport then? Mine would have to have a stretcher as I can’t sit at all.

Where was your pain? Mines in my hip so does that implant thing still work??

At the end of the day I know I’m never going to get better and be completely pain free but I want to be able to get out of bed again and at least be able to sit in my living room sometimes.

So a nurse advises you regularising pain meds not a doctor?

So do you have the 3 week course and then have to go back again for the implant?

What is the place where you stay like? Can you take personal things such as pillows and covers

[Hidden in reply to morphalot]

Could you private message me about it all and the process please and how the weeks go

[morphalot in reply to Hidden]

I don't know how to do something can you tell me

[Hidden in reply to morphalot]

I’ve messaged you hopefully you can now?

[morphalot]

That should have said I don't know how to do a pm! Can you help me