Fibro pain management session

[Taurea]

I attended a fibromyalgia pain management session at the hospital which I found depressing. A lot of the advice was common sense regarding, exercise, sleep, nutrition, pacing etc but the overall message was demoralising. It was: we believe this is a real illness but you are going to have to train your mind to overcome pain; although you experience fatigue and pain, you are going to have to work harder than anyone else to keep up an exercise regime to stay strong and healthy; there is nothing physically wrong with you it is your brain and pain receptors misreading pain so you should just ignore it; yes we know you probably have tried all these suggestions already but you are going to have to try them a bit more and a bit harder and if you still feel unwell it is because you are not putting enough effort in. Oh and remember to be kind to yourself, say no and give yourself self-care (but not too much because you have to keep working hard to be well.)

There were a number of people, including myself, who have other conditions. One poor woman has rheumatoid arthritis, ankylosis spondylitis and a couple of others as well as fibromyalgia and said all her pain medication had been taken away and she had been told to attend the course because painkillers wouldn't help fibro. She asked the physio how she was meant to distinguish the fibro pain from pain caused by the other conditions. Apparently fibro pain moves around but even so she was now expected to do without pain medication for all conditions because she had a diagnosis of fibro.

Anyway the impression I got was there is a movement within the NHS towards getting everyone off pain medication and the answer to all ailments is exercise and mind over matter. If it doesn't work for you it it because you are not trying hard enough. Am I being overly cynical?

[Sue_64]

Hi

No you're definitely not being over cynical, I was first referred to the Pain Clinic 12 years ago and was referred for the same course, I was so bored halfway through I fell asleep! consequently was told off & told that was the behavior she was talking about, I wasn't going to try & help myself, I was so embarrassed as the others laughed, it was like being back at School, I walked out, I was 53 years old then, not a child. Nothing has changed, maybe worse. My GP has just offered to send me again, I will leave it to your imagination my response. They are trying to stop my Opiate, I have Fybro, osteoarthritis from neck to lumber spine, right hip, spinal stenosis, herniated & bulging & discs & Sciatica, how the devil are you supposed to make yourself believe you haven't got these conditions. My GP of 30 years who retired recently & I miss him terrible was always honest with me & told me I will end up in a wheelchair, I am fighting that, for me I think I am doing what is physically possable at this time, it's enough for now. Sorry for long post but this makes my blood boil.

Donttkick yourself I get your reaction, I'm sure we're not the only ones. Sending healing hugs 🤗🤗🤗🤗Sue x

[Taurea in reply to Sue_64]

So it sounds like this approach is nothing new. I did have to resist the urge to question or disagree with certain points as I knew I would just be regarded as being difficult. One women just kept shaking her head so I guess she felt similar.

[Sailingtrio]

Hi, I completely agree. I went to a pain management intro group by the nhs on Saturday. ALL self management with the exception of reviewing meds. It feels like they don’t know what to do, so, heh, exercise, watch what you eat, rest, reduce work of you can, etc etc. If you do that and you are still in agony...you are on your own !!!

So no, you are not alone.

Take care, hope you are resting, exercising and eating well

[Taurea in reply to Sailingtrio]

Thanks - it's good to know others feel the same.

[bobbybobb]

Unrealistic expectations, condescending staff and speaker's. I thought the money could have been better well spent to help Fibro sufferers.

[Hidden in reply to bobbybobb]

Hi

I was sent to pain management who referred me to a hypnotherapist!!! I found it very patronising, it was on a 1-1 basis but I'm afraid it was no go for me!!!

My husband was allowed in while the therapist went through everything but the week after I had to go in in my own!!! I just couldn't get it into my head as to how hypnotherapy can more or less stop your pain. Sorry, rant over!! It might work for others but not me!!!

Love and hugs to you all Lynne xxxx

[bobbybobb in reply to Hidden]

I never fancied hypnotherapy. Although I think it helps some people. They tap into an unknown resource in the brain. I've read article where people have had a lot of problems after hypnotherapy. x

[041051]

I have fibromyalgia along with other conditions. I had a lovely consultant at the pain clinic who did guided steroids and denervation treatments but he retired a couple of years ago. I was also told that the local clinic were no longer doing these treatments and I would have to go to a hospital which is a 5 or 6 hour round bus trip away. At my first appointment I was handed a leaflet about a pain management course and told he was referring me to it. It turned out to be a fibromyalgia course but we had to have an initial 1 to 1 appointment with another consultant. The course was for 6 weeks and was 5 hours each time. I wasn't going to refuse to go on the grounds that I couldn't manage 5 hours but after an hours initial consultation the consultant was clear that I couldn't do the course. Then I asked to be transferred to a clinic in a different area. The consultant there came up with the lidocaine infusions but again, after the hours consultation with his "team" I wasn't suitable for that either. I phoned MSK yesterday and explained all of this (plus the appointments that had been cancelled and the consultants who had seen me for 2 minutes and told me it was the "wrong appointment for me"). I now have to ask my g.p. to refer me back to the pain clinic with a list of all my diagnoses and I was told that there a 3 clinics locally including the original one that I can be seen at. I think sometimes we just get passed around to keep the waiting times in order rather than treat us.

[Vivalaviv]

One consultant told me not to bother as its geared towards getting people off pain killers.

Went to first & only session despite this advice. 6 weeks 9am- 4pm mon -fri ! And a warning if you miss a day or you are late then you lose your place & have to apply again. I said if i could manage that i would be well. Treating sick people as well is a trait in the nhs i 've come to recognise.

A complete waste of time. Well people telling sick people how to manage pain they dont feel themselves & dont understand the cause or the effect. All of it was common sense but the panic in the room was palpable as most people relied on these meds & were frightened of them being withdrawn.

Replacing analgesia with exercise is a treatment only the nhs thinks is logical.

A personal trainer at home. An infrared sauna & a hydrotherapy pool at home & the £ to explore alternative therapies would be my ideal not NHS boot camp for addicts