Pain clinic referral

[Peder]

So.. feeling like ive been hit by a bus in the morning on waking, i was refereed to pain team. that was last july. I receive an appointment yesterday for the end of April. Hoooorah i thought, iits only been 7 months.... but no. the next envelope i opened is from the hospital where i was going to go to see the pain team.. and it goes like this... as he has fibromyalgia, he needs to be seen in the community. i'm now waiting on another list and it will be some time again.. the phrase pillar to post rings a bell.perhaps ill get one... before i hit 60. im 51atm...........

[13thAngel2019]

Hi Peder, I can relate to what you are going through, in the mornings when getting out of bed I feel stiff and aching all over, then when I start to move around my back is painful through aching so much and my legs feel like the tendons are being stretched to near snapping point in my thighs & calfs. It feels like I've walked for miles in my sleep?!! I am 52 in May this year & also go to pain management for Fibromyalgia and Cervical Spondilosis. I was surprised to find that all they have done in the 8 weeks I have been going (once every 2 weeks,) is to let me know that I can control the pain to a "manageable" level by thought process? Also by eating and drinking healthier things. They have shown me some 'easy & gentle' stretching exercises to do a few times a day, although I have tried to do these exercises I had to stop as its causing me more pain. I know that everyone copes differently and this sort of pain management may work well for others? Just trying to give you a little insight into what you can expect when you finally get your appointment as it might not be what you expect? My next appointment is next month so they might suggest another way to try for me as atm it's not working! Good luck 😏

[Hidden in reply to 13thAngel2019]

Hi

I know exactly what you mean. I've been to pain management, they have said to try deep breathing to help with the pain!! What a waste if time! I too was told to do the gentle exercises, no chance, I was in agony!! Hope everyone is feeling a little better. Love and hugs Lynne xxxx

[13thAngel2019 in reply to Hidden]

Thank you Lynne for the reply. So you have already been through this rigmarole and it hasn't changed, still the same? I don't know what will happen when I go back next month as it was just before Christmas when I saw them last, my next appointment was beginning of January but I had really bad sinusitis and had to cancel, this was the next available one. I thought the last appointment was my last but they've asked me to go back, for how long I don't know? As I've said, I am not getting any benefit from what they're asking me to do? I hope that your not suffering with too much pain Lynne and that you find a better way to 'cope' with it? If you do, let me know! Love and hugs Angie xxx 😵

[Hidden in reply to 13thAngel2019]

Thank you Angie

My next appointment is 12th march as I had to cancel my January appointment. Love and hugs Lynne xxxx

[Peder in reply to 13thAngel2019]

Thank you all, ive now had my first sit down power point presentation with 20 others. That was the first session.

Interestingly enough, my wife has just applied for a job on the pain team, Maybe i might get some treatment that works after all..or not as the case may be.....we'll see

[Hidden in reply to 13thAngel2019]

Can I be brutally honest? I went on a two week Pain Management residential course at one of the big London hospitals. There were 12 of us. We all looked pretty normal - you could pass most of us in the street and not realise we were ill or disabled. One or two were on sticks. The course was patronising, and assumed you had no common sense in terms of trying to look after yourself.

However, being with other people on a level playing field was wonderful. I was with a really fun loving bunch of people and we had a laugh. We went out for meals in the evenings, and a few of the group went to the pub a couple of times. There wasn’t a moaner amongst us. It made me realise I wasn’t alone, and that there are a lot of people out there also struggling. So from that point of view I highly recommend giving it a go! Sort of reverse logic... But the course it’s self was mind blowingly dreadful, and not a single person in my group thought it had been of much help. No doubt the residential course vary from hospital to hospital. ‘ would be interested to hear if anyone has had a different or better experience on any residential NHS course for pain.

[13thAngel2019 in reply to Hidden]

Hi LondonSE19, I do know and appreciate what you are saying, but I opted out of group sessions and went for one on one instead? For past few years now I have been finding it more and more difficult to talk to and mix with other people? I've even turned down loads of invites to old friends and family get togethers, as my memory has gotten so bad that on a few occasions when someone who knows me has come up to me and said "hi Angie, how are you?" etc & I honestly don't remember their face, name or anything? This has been so embarrassing as I didn't know what to say to them. Sometimes I used to just agree with whatever they said then when I got the chance, I quickly made an excuse to get going as I had an appointment? Or I had actually told them the truth about not being able to remember a lot of my past including names, faces etc due to me having Grand Mal Epilepsy for a few years, until doctors found the most suitable medication for me, but they also told me that the seizures could have an effect on my memory, which they (as I've always thought?) had, until I was diagnosed with Fibromyalgia in last year or two and found out that memory loss is also associated with this condition? I have lost a lot of confidence in myself and hate having to go out anywhere, including doctor's appointment's? Sorry, I didn't mean for this reply to be so long, but I do tend to waffle on before I can get to what I want to say! Yet another embarrassment 😵😱

[Hidden in reply to 13thAngel2019]

No worries about length of your reply! Yes, I agree with you. Socialising is hard work.

Like you I find myself turning things down. I do push myself to go along to things here and there, as I know that now living on my own I need to keep up contact or depression will take hold big time. With family events I now tend to pop along to something for an hour and then come home. No one ever says anything so I guess they realise I’m doing the best I can. Same with long term friends. I explained initially when I started doing it, but don’t say anything now.

As for doing pain management in a group it filled me with horror!!! I remember waiting for a cab to go to hospital with my small suitcase on the pavement and nearly phoning to cancel. I was very, very lucky to be with a group who were brilliant. If you don’t try something you don’t know if it could help - I met someone in the group - 13 years later she is a very close friend, and we are on a level playing field so we know how the other one feels. I’m an ex teacher, she’s an ex nurse. That was a real bonus.

It’s hard because Fibromyalgia wipes you out, but next time something comes up maybe just take the plunge and dare yourself...

18 years is a long time to be ill, so I feel for you.

[Peder in reply to 13thAngel2019]

Thank you all, ive now had my first sit down power point presentation with 20 others. That was the first session.

Interestingly enough, my wife has just applied for a job on the pain team, Maybe i might get some treatment that works after all..or not as the case may be.....we'll see

[Hidden]

Don’t go building up your hopes re the pain clinic. They looked at my drug list. I said pain was worse. They kept my medication the same as it was. I’m 62, have had Fibromyalgia for most of my adult life, and severe Spondylosis. Only saying this so you don’t get carried away thinking they can sort it all out. They may well be able to re- jig things for you, or maybe not. I’ve spent years feeling like you waiting for this or that appointment, having changes made out of the blue to appointment times. As they say, ‘ it sucks’. Good luck and hope they CAN offer you something helpful.

[Peder in reply to Hidden]

Thank you all, ive now had my first sit down power point presentation with 20 others. That was the first session.

Interestingly enough, my wife has just applied for a job on the pain team, Maybe i might get some treatment that works after all..or not as the case may be.....we'll see