Pain Clinic and other assorted short horror stories!

[Blackwitch]

I had an appointment this week with the 'Pain Management Consultant'. My first experience with him (as some of you may remember) was a disaster. I was awaiting a total knee replacement and wanted to try and cut down my various (& numerous) medications before the surgery. His advice was to 'just stop! Just stop them!' I said I didn't think that was a good idea, especially as I'd built up gradually with a few, eg. Gabapentin, Buprenorphine patches, Amitriptyline.

I did manage to reduce the patches from 25 to 10 to 5 and off. Gabapentin I reduced and stopped over 3 weeks then immediately felt as though I was dying!! (I later found out this was withdrawal which could have been dangerous).

That was last Summer.

I'm presently taking Amitriptyline 25mg X 2 at night. The only other pain killer I have is my Liquid Morphine and I take it as & when I need it. Paracetamol does nothing.

I have been attending physio sessions (arranged via the Pain Clinic) which I had to put on hold firstly for my knee op and secondly from my abdominal surgery. I am still getting pain from the site of the incision from under my ribs down to my pubic bone.

I was told by the pain consultant to stop the morphine as it was the worst possible thing I could be taking. I asked him what else I could take for the screaming, burning pain I get from the base of my spine, around my hips and down my legs. He just sat back in his chair and gave me a blank look!! I really could not believe this. He said there was nothing else, I'd tried everything.

He started to get up (as though getting ready to shove me through the door) so I said, 'what about slow release morphine'?

He had this almost joke children's entertainer face on and put one finger in the air and said, 'What a good idea. I was hoping you might have an answer'!

I really can't believe this man is real or how he got to where he is but hey ho we jump through yet more hoops.

On a brighter note, I've had 2 sessions of hydrotherapy which I think are the best possible physio available. I'm very lucky to have a pool quite close but I know this one is struggling to keep open. How shortsighted not to have more spread across the country.

TempleofDoom xx

[nomoreheels]

It defies belief doesn't it? Quite how he's remained in his position should be questioned methinks. You're quite right about the gabapentin, I'd only been on 1800mg daily a matter of weeks when it was decided by my GP & myself it wasn't going to help & so I tapered it at 100mg per week. I've not yet been referred to our local Pain Clinic yet, trying adding my nightly amitriptyline as a morning dose as well so until I know if it's effective enough I do not have that pleasure. That said my h has experience & says the Prescriber is very good, knows what's best to take with what for optimum results so hopefully my experience will be quite different from yours if I do end up there.

I hope the hydrotherapy continues to be helpful & you don't lose it, I'm sure if they realised the benefits it'll remain open (if it's not down to the normal budgetary concerns that is). x

[Blackwitch in reply to nomoreheels]

Like most of us, I feel we are treated like Guinea pigs where trial & error, mix & match, seem to be the accepted way of treatment.

I seem to have been prescribed most of the first choice (cheapest?) drugs like Methotrexate, Sulphasalazine, Hydroxy etc but never went as far as biologics before I was told it may be another type of inflammatory arthritis, perhaps not rheumatoid. When I think back to all the adverse reactions I've had, the side effects, rashes, sickness, weight gain, it sometimes makes me want to have a real go at someone. My husband has taken the brunt of it but at least he understands and, of course, everyone on this forum understands and can add numerous other horror stories of their own.

I'd just like to feel that someone was taking 'ownership' of me and was looking at the bigger picture (if you see what I mean).

I'm presently seeing my Rheumatologist every 6 months

Orthopaedic Cons every 6 months

Surgeon who did TKR (last app next week - hopefully)

Colorectal surgeon who has been following up CT scans of lungs as my original CT of my abdomen in December, showed lung nodules!!

(Rheumatologist very interested in that as may mean RA!!!!)

Pain Clinic

Physio & Hydrotherapy

Plus my dentist wants me in 3 monthly for checkup/hygienist as she's concerned about my dry mouth.

Sorry, I'm trying hard not to go off on a rant but one of my son's dogs was really ill a few months ago. He was seen, scanned, diagnosed and operated on within days. He had fantastic aftercare including hydrotherapy. I'm beginning to think I'd be better off seeing the vet!!

TempleofDoom xx

[jane1976 in reply to Blackwitch]

Think I'll come back as a dog next time! X

[Crusee in reply to Blackwitch]

Grow a tail,start barking, get 4 legs and fur and you're in.......

Crusee

XX

[Pands in reply to Blackwitch]

Thing is, it will have cost £££ for the dog to have the treatment - either paid for via pet insurance or just cold hard cash! Bit like private medical care for humans, if you have the money you can have the treatment...

But yes, our vet is lovely too!

[smithfield]

Hi Templeofdoom.

I am shocked and almost speechless that you you were treated in such a downright cavalier and dangerous way.

To say stop all your medication may have put you at extreme risk not to mention pain. Ok liquid morphine might not be ideal, but we know this and I do not think Doctors would be prescribing if it was not necessary

Have you got the energy to complain?.No one should have that kind of experience.

Glad you found the hydropool of benefit .

[Blackwitch in reply to smithfield]

Hi Smithfield. Yes, I like to think of myself as quite intelligent and informed but once in a while something really takes you aback! This was one of those moments and I was very near speechless.

I really fear for people who don't have the benefit of the Internet and a forum like this. ToD xx

[smithfield in reply to Blackwitch]

I aged as I wrote my reply I was thing of the people who lack confidence and have no support. As you say you are intelligent and informed and it floored you.

Xx

[Crusee]

Well it doesn't rain on his planet does it? And I think his own planet is the best place for him so he can't upset any more patients.

What an attitude!! NMH is quite right how is he still in that position.At the very least his bedside manner certainly needs some working on.

As Smithfield says if you have the energy to complain go ahead.You went to a medical professional for help with a condition that he specialises in and he should not have treated you in that manner.It is really unacceptable.

Anyway angry moment over, isn't the hydro pool great? I had been going twice per week as my nearest pool is 40 miles away from home otherwise I would have been there everyday.I haven't been able to go for a few months as I still have an open ulcer on my leg and I really miss it.It would feel so good getting into the warm water and swimming and getting pain free exercise .Made me feel almost normal for a short while.Getting out of the pool was the sad bit.I hope you find it gives you the benefits that I had from it.Cant wait to be able to get back in there.

Hope your pain and meds get sorted soon.

Crusee

XX

[Blackwitch in reply to Crusee]

Yes, Crusee, the hydro pool is great but unfortunately it gets very booked up. I'm off to a 'proper' swimming pool tomorrow but we're going with our 4 year old triplet grandsons so I don't think I'll get anything sensible done! ToD xx

[Crusee in reply to Blackwitch]

Oh sounds like you will be busy...but have fun!,

CruseeXX

[jane1976 in reply to Crusee]

The hydro pool sounds great! I'd have warm baths every day if I could but, can't get out of the bath once I'm in! X

[Blackwitch in reply to jane1976]

I'm the same. I've given up trying to have a bath so it's just showers now. The hydro pool has stairs with rails or if you have mobility problems there's a hoist. There's a physio available to sort a programme of exercises. You can take a carer with you if you like. As this is a public pool, they only charge £4.50 or £5.50 with the physio as opposed to £40+ for private pools I've seen! ToD xx

[smithfield in reply to Crusee]

Those bloody ulcers take forever to heal. And keeping them dry is a nightmare.

Hope you are back in the pool soon.xx

[Crusee in reply to smithfield]

Oh tell me about it....I thought this week I would be out of compression bandages but oh no...they have started to leak again.

Haven't been able to shave or put cream on my legs for months to get rid of the hairy bits.By the time I am able to do it I am going to need a bloody lawnmower,Gggrrrhhhh!,,,,

Crusee

XX

[smithfield in reply to Crusee]

You made me laugh but I really empathise.

Get the lawnmower blades sharpened you might need them.🌹 xx

[Crusee in reply to smithfield]

Sharpened and ready to go Smithfield!!

Revving up as we speak.

Crusee

XX

[Snooze-Master]

A lady at work told me to stop taking "pills" earlier this week as she is going to pray for me!

Tell me more about the hydro pool, I swim and use the juccuzi at the gym, it helps, is there more?

[Blackwitch in reply to Snooze-Master]

Yes, Snooze-Master, there is more. The water is very warm, much warmer than your average pool. It's for physio, so exercises you have difficulty with on dry land are much easier on your joints. Of course, it doesn't mean you don't feel it later!! ToD xx

[jane1976]

I don't get these so called professional people they treat us as though we don't matter or are invisible!!!

[Crusee in reply to jane1976]

Exactly....as they say on The Chase...just another day at the office.

Crusee

XX

[Hidden]

Unbelievable!!! The very best specialists graduated at the top of the class....So....it stands to reason that your pain expert graduated at the bottom of his class .....or did he get his position from his mommy?....Sorry for the sarcasim, it just baffles me how some experts don't understand the stabbing pain.

I wish you the best

Sue

[Crusee in reply to Hidden]

Or maybe he got his certificate in a Christmas cracker.............

Crusee

XX

[Someonesmother]

Unfortunately these snake oil, so called, pain clinics are the latest fad in medecine where the monkeys have taken over the asylum. The object is to get evrryone off opioid based drugs and convince them it is all in their heads and through cbt and other concious aversion therapy you will be cured. Total load of bollocks.

[Blackwitch in reply to Someonesmother]

Yes, after avoiding the dreaded Pain Clinic for some time, my GP refused (yes, refused) to look at my pain relief. She said that because it was chronic pain, the only thing I could do would be to go to the Pain Clinic. I decided to bite the bullet and go. I sat through the group sessions. Most of the people there had struggled to get there and were in a great deal more pain as a consequence. I managed to keep my gob shut, nodded, gritted my teeth and got through to the appointment with a physiotherapist who gave me some exercises. I then had my knee op in September and abdominal surgery in December so had to postpone my appointments. You're quite right, the aim is to teach you about pain, the differences between acute and chronic pain and ways to learn how to cope with it (breathing exercises, pacing etc).

It's all very well but they promise that the Pain Clinic opens doors to acupuncture, massage, ultrasound, TENS, etc. but I have never been offered any of those. Of course, it comes down to money (the group sessions and the Witch Doctor who takes you off your meds)!!

One thing that really sets me off is all the talk about 'Mindfulness'. Now there's a made up word that's raking in money for a lot of people to the detriment of us Guinea pigs.

ToD xx

[Someonesmother in reply to Blackwitch]

Yep I totally agree. I live in Australia and the push is that anyone with chronic pain be sent to one of the snake oil salesmen and be taken off all pain meds as it is all in our heads. the only other thing they offer is anti depressants, because of course it's all in our heads. I have resisted all of that and will continue to resist because I will not be able to hold down a full time job with out pain relief and no amount of 'mindfulness' will get me through a day at work. Who has time to gaze at their navel while working full time. Complete BS as far as I am concerned. Live my life in my level of chronic pain and tell me about mindfulness. None of them have ever experienced it, they have learnt about it in books and as you say being given authority by the governments to carry out experiments on people. Good luck. I would not have been able to keep my mouth shut you are a better person than me.

[Snooze-Master]

Lots to talk about in this thread, My GP gave me my diagnosis as a throwaway comment and told me to go home and google it, I did, I just burst into tears (I know better now!

I used to eat organic (more or less), nothing processed whole foods, wouldnt take a pill of any sorts, now: RA flares, Osteo feet, ankles and wrists. My new motto is "Gimme the Drugs".

[Blackwitch in reply to Snooze-Master]

Hi Snooze-Master. Me too! I rarely took a paracetamol until I was diagnosed with Rheumatoid Arthritis then it just got out of control!

ToD xx

[cyprusmum]

Sorry for your trouble. Don't you just love that shuffle in their chair as if there was going to be an ejector button pressed at any moment to fling you out of the room. Speechless is one word used, how he had the audacity to suggest one thing and have totally no idea how to treat you in the same breath.

I always feel like I hit the floor running and the clock is ticking. Half he time even with notes,I get flustered, but hey ho, we get to do it all again in a few months time!

[pinksugarmouse]

I swear if I won big on the lottery I would fund the building of a hydrotherapy pool in my town. Only open to people with restricted mobility and pain (and probably pregnant women and tots) People who could really benefit from swimming but cannot manage to lower themselves up and down using painful wrists to get into cold water sending spasms up their spine. It's one of the best forms of treatment for RA sufferers and yet so few of us can access it.

I am not surprised paracetamol does nothing for you Temple. Whenever anyone suggests it to me I reply that paracetamol is to Rheumatoid Arthritis as a sticking plaster is to a deep gaping wound. That tends to shut them up.

Wow that consultant is worth every penny isn't he? What was his degree in comedy? Perhaps you should have asked him; 'you do know this is medicine don't you? Not stand-up?

I have never attended a pain clinic and I wondered what they would be like. I thought that the patients would get to talk to each other and share their experiences and then the 'medical expert' would offer a range of treatments for people to try. Obviously I was very wrong. Has anyone else attended one? Are they all c***?

I find mindfulness helpful for my anxiety but useless for pain. The idea is that you focus on the present moment, but if you are in pain then surely you would want to distance yourself from it not focus on it.