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Chronic pain

Had enough

11 replies

AllLopsided · 24/09/2022 00:22

I'm just about at my limit with this.

I get IV infusions every 3 weeks to help with my pain, it's in patient treatment. My pain clinic has moved to a new building and the beds are no longer beds, they are more like the kind of tables used in physio or massage. It was impossible for me to get comfortable. I would literally get on for 5 mins and have to stand up again. Doctor told me to take 2x my next dose of usual meds straight away (early) and gave me lidocaine which he could run through more quickly.

Incidentally my excellent physio says the most important part of the treatment is making sure the patient is comfortable!

I left with about the same amount of pain I arrived with.

There's just no point continuing. I feel a huge sense of loss that this has been taken away from me.

I have back problems, an ankle joint that needs replacing (whole other story) and a hip tendon problem from an accident 6 years ago that there is no treatment for. The tendon on the side of my hip looks much older than me (in my doctor's words). The one that joins my bum to my leg has insertional tendinitis and surgeon says it is not operable. Pain clinic don't want to inject cortisone because it's too near sone critical nerves. This means I cannot sit. No one gets this. Would a person with a walker/crutches be required to walk for an hour? I think not. Yet I am required to sit in consultations and sometimes waiting rooms for hours. (I don't sit, I have to stand. Which causes havoc with my back/ankle). I take regular painkillers but nothing touches this. It's fine if I'm lying down. The sitting pain is from the pressure. It's like sitting on a knife.

I am 55 and feel like my life is over. My problems started 17 years ago.

Not expecting solutions, just needed to vent.

OP posts:
SpinCityBlue · 24/09/2022 00:28

Sympathy from me. I feel like taking a camp bed in to appointments.

Onceuponawhileago · 24/09/2022 01:05

Im sorry. I have chronic pain too. Its awful and nobody understands. I didnt want to leave your thread empty. The one thing that helped me a lot was curable. Have you tried?

SpinCityBlue · 24/09/2022 01:12

Do you mean the Curable App, @Onceuponawhileago ?

Onceuponawhileago · 24/09/2022 01:16

SpinCityBlue · 24/09/2022 01:12

Do you mean the Curable App, @Onceuponawhileago ?

@SpinCityBlue Yes

AllLopsided · 24/09/2022 22:04

@SpinCityBlue you nailed it about the camp bed! I was actually considering today whether I could manage to carry a yoga mat and pillow along with my ice packs, ring cushion and cane Grin

I was at an appointment in my nearest city about my ankle a couple of weeks ago and have been feeling ranty about the sitting issue ever since. It was an hour in the car (DH was driving and I was lying in the back, but still got bumped around) and then I waited over 2 hours for 10 minutes of the great doctor's time. I am in a place with bloody expensive private health insurance too so am not talking about the cash-strapped NHS here either...

Thanks for mentioning the Curable app - you too @Onceuponawhileago

I have seen ads for it on Facebook and wondered about it. I felt a bit like it was telling me my pain was in my head though... I am wrong and did you have good experiences with it?

Thanks for the support both of you, I really appreciate it.

OP posts:
SpinCityBlue · 24/09/2022 22:22

You're welcome, OP. Nice to find a bit of company. I'm on Pregabalin and waiting for surgery now, it looks like (lumbar).

I think the 'mind' thing is interesting. It's not about denying the injury or the pain, it about re-training your brain in how it has the personal conversation with your pain messengers. I had some really good results with another painful condition (psoriatic arthritis, so not an insignficant one). Just haven't had the headspace to start with the spine stuff on top.

Onceuponawhileago · 24/09/2022 22:41

Hello @AllLopsided More than happy to support. Curable is excellent. Do you subscribe to flipping pain? Really good also. Curable is there to help with chronic pain, it might be as a result of an operation etc but ot works well. Hang in there. Happy to chat.

AllLopsided · 24/09/2022 23:41

Thanks again to you both. I'll take a look at Curable again. Retraining the brain is a concept I can get on board with!

Glad it helped with your PA SpinCityBlue - that's encouraging. I do wonder if I need some kind of re-wire in my brain because I can't believe I've had so much bad luck in terms of injuries that have ended up being chronic.

I have lumbar pain as well, though not bad enough for surgery. I hope there is a solution out there for you. I take Pregabalin too (and opiates, and slow release NSAIDS). I'm thinking I may have to get my oral meds tweaked if I can't carry on with the infusions. Increasing the Pregabalin has helped in the past but I think it's the biggest contributor to my fatigue.

I hadn't heard of Flippin Pain Onceuponawhileago but have just googled it and it looks interesting.

I go through phases when I do the rounds of all the relevant doctors looking for a cure and then get despondent and decide I can't do it any more. And repeat... I know I'm lucky that I can opt in and out like that.

OP posts:
BryceQuinlanTheFirst · 29/09/2022 09:05

I'm sorry for you. I've had those infusions but they did nothing for me sadly.

I use curable it's the only thing that has helped (after every treatment possible on Harley St). It does say pain is in the brain but that's true of all pain whether you break your arm or have a migraine. They are not saying it is not a real sensation. They are saying you can retrain your brain. Pain is your body's protective response so it's trying to reassure your body you are safe.

Understanding how pain works and why we experience it was a crucial first step for me and over time I was able to ce off 8 coedine a day.

AllLopsided · 06/10/2022 00:09

Sorry I only just saw this. Thanks Bryce for another recommendation for Curable! I am checking it out.

Feeling really down about everything - I hate it that my options have been taken away. Don't want to increase my oral meds really - I'm on a low dose so an increase means doubling a dose, with significant side effects. Or trying to squeeze in 4 doses in 24 hours which means setting an alarm at 5am. I resent having to wake myself up as if I'm asleep, I'm not in pain! To make things worse my usual brand is out of stock, and I'm stuck with a generic, which doesn't work so well.

Just read that ketamine can act as an anti-depressant as well as pain relief. I guess it was working behind the scenes there as well because my MH has taken a big dive. I am 55 and can't bear the thought of 20-30 more years like this.

I miss getting that magic moment of no pain at the end of the infusion. I miss the fact that I had regular contact with a great team of doctors and nurses and now I'll be left with no regular care, because what can they say if I can't have the treatment they advise? (Rhetorical question). I have made an appointment with the consultant and plan to ask about all the possibilities I haven't tried - even acupuncture and electric shock treatment!

OP posts:
Broadswordcalling · 06/10/2022 00:17

I've had a spinal stimulator fitted OP. Could you ask about that? I'm sorry you're having such a bad time. It's very wearing.

I've just gone back to work pt after nearly 3 years off and my back is being a right twat after getting it to the best it had been before my surgeries (lumbar SCI). Not sure if I need to slow down or keep going. I'm 42 and even turning in bed is hard work. As I'm typing this I'm lay on my front with my left ankle making my foot flick to the side. Not painful as such, more fucking annoying!! Sleep and no pain is a distant memory. Sending hugs to all x

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