Chronic pain clinic & conflicting advice

I think I need help , my pain clinic physio said I have to pace myself or try and stop whatever I am doing before the pain hits the 8 mark, (1_9)which is sometimes very little, and when walking can be as little as 3 steps, however I had a pain nurse appointment a week later and she said that I should take all my pills and carry on regardless. My pills, I think it's the dihydrocodeine 30 actually make me sick when I take 2 or 3, so I thought that i would be really brave and go visit my G P only to find out that I have to wait a month to get an appointment.

I don't know what to do

Any advice?

Ps I suffer from fear of doctors actually people in general, and find it very difficult not only to talk but to tell the truth ..I find myself saying that I am fine because it's the quickest way for me to do a runner and be out of there, even though I then disgusted with myself for not getting the help I physically need. My mental health is stopping me from getting physical help

37 Replies

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  • Hi Pollyannna

    Yes we do every to pace ourselves but it's so hard to !! I have been in Bath hospital as a inpatient and they tell us how to pace ourselves ,but sometimes u can't and then u end up in bed for 2-3 days !!!!!! I've had CRPS for six years and it's not getting any easier !!!!! I can only walk very slowly now because of my balance!!! Could u email your Drs? Or walk in ? I did and was seen 15mins later 😊 I think we who suffer with this beast should have a coloured card so we can be seen anytime at the Drs,hospital etc

    Yes I suffer from being around people,crowds,noise, Also I agree with u with saying that I am fine because it's the quickest way to get away 😉

    What I do is write everything on my mobile then I show it to my dr/specialists

    I hope this helps

    Where r u from ?

    Christine CRPS XX

  • Yes it helps, because I thought that I was the only one who bonkers. I will try the docs if I don't get anywhere I think I will give up

  • no dont give up. it wont help you. make this an important project that you must follow through as surely you dont want to be in pain. please dont give up.

  • I won't .. Not tonight anyhow .. Problem is .. I wouldn't want any one else to suffer so I would need time alone .. And although I am very secretive my partner won't leave me alone for more than 10 mins .. Which only somehow adds to the negatives .ie. I don't want to be a burden .. But no worries X thank you x

  • Hi Pollyanna ,

    Please do not give up X

    Go to your Drs and say u r in pain they can not turn u away ,

    Please don't give up xx

    Gentle hugs xx

    Christine CRPS

    PS WHERE HAVE U GOT THE PAIN ?

  • It's my back from T1 in my neck which gives me a little pain but mostly makes me dizzy. I also broke T8&9&12& L1 .. However supposedly they are ok now and the pain that I have now is " unspecified " ie the nurse said more or less that my body is telling me lies ..

  • What is CRPS ?

  • try writing it all down. hand it all to the doctor what you have written, im dont like going to the doctor either. i only do if im in agony. i find it hard to be honest as i feel im being weak and i dont like anyone to see me like that. i dont want to cry as if i start i wont stop so i can understand what your saying. i think its good to write it down and if you cant get an appointment send the letter in or ask for a telephone consultation.those dihydrocodeine can make people feel sick and also constipate you too. you can get stronger slow release ones so that you dont have to take so many in a day. i expect you may still feel sick but i dont think it would be so bad than taking 3 a day as everytime you take a fresh one the sickness comes upon you again. my mental health has a lot to do with it also as i was on anti psychotics for 7 years and it took me 2 full years to get of of them the doctors are also saying there are other ones that dont cause the same problems but i dont want to take them. so try writing it all down and hand it to the doctor or as i said ask for a telephone consultation and write down what you want to say. wishing you all the best. love grace xoxo

  • Thank you for your reply I will try and write everything down and appointment or not I Will hand it over for him to read. As far as crying I agree I did break twice. Once I'm not really sure how I got home .. But it wasn't intended and the second I was rescued from the canal and somehow managed to convince my rescuers that it was an accident .. .. Third time unlucky .. No I don't like to drink to much just in case and cry no no cant not good .. Somehow I my core says that it WILL get better

  • Sorry if don't I don't reply any more tonight .. Just getting upset .. And problem is .. Can't read .. Words getting jumbled sorry didn't make sense .. My head has failed me .. Again .. ...

  • have a nice rest. don't worry

  • Thank you for last night, today's another day and I am determined to be pro active in getting help thank you again

  • For pain relief, and not worrying about pills. Ask your pain doctor to try fentnyal patch. I'm on 100 mcg. Depending how bad your pain is its 25, 50, 75, 100 mcg helps dramatically, and no addiction to pills. Will not effect kidneys or liver. Good luck.

  • Fentanyl is highly addictive. The drug is going into your system no matter what the system is for getting it there. It can work very well but perhaps should be a last resort considering the problems that it comes with.

    I know people who think it is great but my experience was a nightmare.

    Pollanna. I would suggest you take someone with you to the doctor. If necessary they can speak for you or gently correct you if you are having problems with giving an accurate picture of how bad it can get.

    Best of luck

    Dee

  • Hi thank you for your rely. How was fentanyl for you?

    I'm not sure who I can take with me but I give it some thought

  • I am afraid that Fentanyl , whilst working g very well for my pain was terrible in other ways.

    The patches are supposed to work for 72 hours but with me they stopped working after about 56 at first and when they did I experienced horrible anxiety and with that went shaking and sweating. withdrawal in other words. The withdrawal started happening after 48 hours then after 24 so I was experiencing these symptoms every second day. I was taken off the patches but gradually but still had major withdrawal after each dose reduction. Altogether it was a 3 months horror story.

    Yet many people find none of this happens with them except the patch not giving pain relief for quite the length of time.

    So it's a question of try and see maybe as it was the only time I 4 years that I experienced very little pain and my activity levels rose. in fact walking was one of the third gs I did when the anxiety got so great that I couldn't stay in the house !

    SORRY if my story is a bleak one. There will be many that aren't.

    Dee

  • Thank you for your reply, I have been to the docs and he said that after fentanyl there is nowhere to go and I am not ready for that. I hate pills and I hate side effects so I really do appreciate your post.

    Thank you for all your help

  • I agree it's just a different absorption method so no better than other opiates

  • Hi Pollyanna

    It is hard to know what's best to do when you see several health professionals telling you something different!. I go to a pain physio who has said what yours has , the importance of stopping before pain gets too bad!. Pacing is much better and given time you might find you can do slightly more and feel good about yourself. Physios have good experience of this. Hope I've helped and good luck. X

  • I feel that you should take the physio's advice. Pills only mask pain, and if you have chronic pain often the pay back will come latter. You may well be able to do more in the short term. Maybe the pain nurse training focused in acute rather than chronic pain, they are too different beasts. I found learning about chronic pain empowering, and there is a lot to learn, I listen to a lot of the airing pain podcasts. They have helped me so much get my head around it and feel less isolated,

    Keep on trucking and grab your happiness where you can.

    .

  • painconcern.org.uk/airing-p...

    There are loads of different ones, I offer you the link.

  • Thank you for the link

  • Thank you for your help, I don't actually know the difference, I only know that it's chronic because that's what the nurse called it at the pain clinic, just before she sort of said that they don't know the reason what is causing it, and that it isn't there job to find out, it's just to try and help me learn to live with it.

    It just doesn't make sense

    But I will try the link thank you

  • Did they refer you to a pain management course, the one I went on was called Opotmise. They cover exercise medication and strategies for helping live with pain. I found it helpful once I realised that although the course was called managing pain that it wasn't about managing the pain away. It's about living the best we can with what we have. Good luck.

  • If I do get offered the course.. the nurse did talk about a course which was 10 full day's i think which I must admit just sounded painful in itself, I could be wrong as I went into panic mode a little because i don't agree with keeping the pain I just want whatever it takes to get rid of it, and I can't help but think that if I could find the cause then it should be able to be mended.

    I will do it though if it helps

    Thank you

  • Oh at last I have found someone who has a phobia with going to Drs , I suffer so much from not going pain wise . I also take Dhc continus twice a day . Pacing I find that if I can manage 10 mins then I pace by doubling the rest time , it takes for ever to get house cleaned but I manage and when it's done I'm so happy to be tidy . Have you got anyone who could go with you to the Drs maybe .You deserve to get some help please be brave and I know just what your going through, I'm struggling really bad with breakthrough pain , xx

  • Well I was really brave today I went and made an appointment... 1st hurdle over and done, And due to the nurse who dose my blood being on reception I can go tomorrow, so I am not going to bed tonight until I have written everything down for the doctor...so I don't have to talk and hopefully all will go well.. meds changed and advice.

    I will have to go alone as I am even scared of letting my partner know how much pain I am in. I feel such a disappointment for him, I used to very active and worked so had money too, now I'm just a drain.

    I am sorry to hear that you too have "" white coat syndrome"" as they call it, if my plan works I will let you know and maybe you can try it too to get some more effective pain relief

  • Hi yah, I'm so glad for you and good you got such an early appointment , that's part of my problem I usually have to wait so long for an appointment that the anxiety starts . I'm such a mess . X

  • I think making a comfortable link with the super nice nurse has helped me to be brave and go to the docs, that and the desperate need to reduce my pain. This is the only think of place I will go alone even though it's the worst. I have written everything down now ( still a bit mish mash ) but I hope he will understand. If it works you should try my theory..I will let you know

    Kind regards

  • hi pollyannna,yes I agree with your problems but I to was stubborn and stupid several years ago and it nearly cost me my life,I never bothered getting registered with a doctor and only with the intervention of a work colleague I doubt I'd be here to tell the story,I had a abscess on my appendix I was losing weight and had emergency surgery,it was a long road to recovery,and I thought I'd never ignore my body again (and yes six years later I did the same again with an internal bleed) I knew I was ill but had my uncle passed away and then my father all in the space of two weeks,whilst this sad period I ignored all the problems,and only for the NHS111 service and a robust response from a Scottish doctor that I'm still here,now I can't tell you or change you,but I had to get external help with an outside organization that help me and keep reminding me about my health issues,and sometimes a gentle support and finding a doctor that suits your needs can hopefully ease your pains,I'm currently on pain meds,and I'm careful when and if I need them,I don't like putting pills down my throat,but since my last scare I take them,so the medication might be painful to swallow,but its a reminder not half as painful to go for emergency surgery,so I wish you all the very best and doctors are human so pour your heart out,and try not to get to flustered and maybe take a friend ttfn

  • Hi I know that It is stupid of me being frightened but my brain just fogs up and goes blank, I never used to be like this and I hope to get back to the confident person I used to be, but for now I will try writing.. this has helped me loads ..

    Thank you and I hope your feeling well and have your pain under control

  • yes confidence can be a big hurdle take your time with things try not to overthink and you'll get there,live life at your own pace,if you don't like the way things are going with professional people,just take a step back,and tell them your confidence is a low ebb,and if you don't feel like they're listening,don't give,you might have to open a few oysters before you find a pearl,don't beat yourself up,time is the most precious in thing in life,so if need be reset your body clock to when you were happy and confident and you can and will get to a place where you feel at ease with yourself good luck 😊

  • Thank you

    Good luck to you as well

  • You need to see someone who have an expertise in physical activity. Pacing is not helpful when you are using muscles in an incorrect manner. See an Alexander teacher for posture and muscle behaviour help. This will help you with discomfort control.

    Work on getting enough sleep. Lack of sleep will reduce the ability to fine tuning muscular control.

    Hope this helps.

  • Hi how about calling your doctor on the phone. My surgery are the same you have to wait weeks for an appointment. My doctor is always happy to talk to me on the phone especially at the moment as my pain is so bad I haven't been out of the house. I also suffer from depression and was told by a doctor my head goes with my back and my back goes with head. It's so true if I am down and depressed my back pain increase and if my back is sore my depression gets worse. I have a relaxation app which is very good. Maybe try that. Hope I have said something that helps. Message me anytime you just need a chat, anytime x

  • Thank you for your reply, I managed to get an appointment with the doctor, and he has given me gabapentin to try. He also gave me a good talking to and said I have damaged nerves and being 50 my pain will only get worse with age, so get on with it. Bit of shock really, the nurse at pain clinic said something the same, I didn't really believe her, but my doc visit well I'm not sure I agree .. I have been expecting to get better.? And I am determined to try they say that it's mental aswell as physical that's causing the pain, well I think it's rubbish. The pain is sometimes the straw that breaks the camel's back. I don't know about you but I have just realised that communicating with people on this site who know how pain make you feel physically and emotionally.

    Thank you and if you too need a chat, just message me x

  • Hi. I have been told similar that my upper discs will start giving me pain! Think your doctor could have been a bit more sympathetic. I think it's that they don't understand chronic pain, I am the opposite with my doctor he just agrees with everything I say and gives me medication time after time never reviewing it. I can get repeat prescriptions for strong painkillers for months and I never get asked to come to the surgery for a review. I agree it's nice to speak to someone else who is going through a similar struggle. Same goes for me message me anytime. Good luck with your gabapentin. You might get some side effects to begin with, I found it was my balance and a bit drowsy, but it passes. Dawn x

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