Well meaning friends

I have had back, knee and neck problems for years the pain clinic has tried facet joint injections, physio, pain course and various other things all to no avail.

I take pain relief as I need it but don't abuse it and yet I have a friend ( who has had a disc removed herself ) who keeps saying I should go to St Thomas's as they have an in patient pain Course that changed her life.

I love her to bits but she's making me feel like an addict, which I'm not.

I have said if I was using to much pain relief my G.p would pull me in straight away

But she's not listening!

How do I make her understand that her problem was different to mine and not lose her friendship as I know she thinks she is trying to help?.

I also have Trigeminal and occipital neuralgia 😩😩

Help!!!!

Moan over

18 Replies

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  • You could say that it sounds like a great course and you will definitely keep that in mind for the future, but right now you are managing on the programme you are on, and you want to keep some options (like that inpatient programme) in reserve for the future rather than using them all up right now.

  • Thanks earth witch,

    It's the same old story that if people can't see what's wrong with you then it can't be that bad.

  • It was she not genuinely trying to share with you, the benefits she herself received from the programme? Why not give it a try anyway? You have nothing to lose and potentially, something to gain.

  • I think your friend is right, you should go to pain clinic. they have lots of ways for treating pain and great advice as well. I have heard so many great reports of pain clinic. I can't remark because I have not been. they don't make you into a drug addict/nor think of you has a drug addict. why not give it a try, you never know. wishing you well xx

  • Hi Dillydally1,

    I'm already seeing a pain specialist and have done a six week pain course at Chelsea and Westminster, seeing him again next month.

    Regards Sue

  • That is wonderful your friend got so much from the course. From my experience of Pain Management some people gain more than others. For me personally it hasn't been of much help, I did learn about the bodies response to pain and how it can become chronic. This was very interesting but the "mindfulness" and relaxation parts were not of much good to me - not that I don't have an open mind it was just that I was practicing similar techniques 15 years ago when it wasn't so in vogue :) and can't use TENS as I have a pacemaker. As for medication they just confirmed that what me GP was doing was right as recommended by the SIGN guidelines.

    Pain is so different to each individual, something that should be brought up on any pain management course. Your friend is probably just feeling a little evangelical as it has been so good for her, she wants it to be the answer for you too. I would talk with her ask her to share what she learned and got from it, your showing interest and not blocking her completely and say you'll think about it. If your happy with how things are for you, tell her honestly, since you listened to her experience first I would hope she respect your decision.

  • Maybe you are not listening to the change that it had on your friend.

    As you appear to be in London see if your GP can send you to the Kingston pain clinic.

    kingstonhospital.nhs.uk/dep...

    The Kingston pain clinic has the services of an Alexander teacher.

    Handling pain is a lot more than taking drugs to handle pain relief.

    Hope this has been helpful.

  • I do not know as I have never attended Kingston.

    The fact that they have an Alexander Teacher means that they are likely to have a very good knowledge of the input posture and muscle behaviour has on pain. They have had an Alexander Teacher at Kingston for at least 12 years.

    A lot of pain clinics have regimes based on drug usage rather than a good grounding on other ways of pain control.

    I have contacted Kingston recently and their Alexander Teacher will contact me when the teacher is back off holiday.

  • Hi John,

    I actually live in Hertfordshire but attend the pain clinic at Chelsea and Westminster I will be having a knee replacement in a few months but there's not much offered for degenerative discs ( lower back ) I also have bulging discs which have caused nerve damage in my are and hand but terrified of having anything done surgically as I don't want to attend up paralysed.

    I attended a 6 week pain course but was already doing the majority of things that they advised, I worked in the health service for nearly 30 years and was medically retired due to my back problems so I do understand my problems, but how do you deal with people who don't understan long term pain and are convinced that your making it up! ?

    Regards

    Sue

  • The pain clinic at Chelsea and Westminster is a bit limited to what they offer.

    Chronic pain sufferers are a small group of people who have an experience that is alien to most people in the population. As such the majority of people cannot empathise with condition. Toothache is the best you can do. I describe the pain I can get in my arm as "like toothache in the arm".

    You can still do something for your condition. You just need to look at how posture and muscle behaviour influences pain. This is an area that is ignored by medical consultants and has been well studied by many in the complementary medical field.

    A good book to read as your are medically minded is: "Human Motor Control" 2rd Edition by David A. Rosenbaum. ISBN 978-0-12-374226-1. You can buy this book from Amazon.

    Another useful book is: "Meditation_A_Way_of_Awakening_-_Ajahn_Sucitto.pdf" This book describes meditation, mindfulness and has excellent chapters on "Posture". It is a free download from

    ajahnsucitto.org/books/

    forestsanghapublications.or...

    The descriptions on posture in this book are superb.

    The UK health service has a very poor record in a number of areas. Before the 5th Shipman inquiry many psychiatrists used to cover the lack of competence by GP's by saying that a symptom of a personality disorder is that the patient does not trust the doctor. There is evidence of psychiatrists doing this under oath in courts of law.

    In the 5th Shipman inquiry evidence was presented on how many nurses covered the mistakes of doctors.

    The report from the Parliamentary committee in February of this year is that the NHS complaints system was used by the NHS to cover up complaints rather than improve the service.

    What I am trying to say is that many things that ran against what medical consultants believed were effectively covered up. I am given you this information because you may not have realised just how much information that was of use to pain sufferers was prevented from being accessed by pain sufferers.

    There was a trial in 1993 that was reported in the BMJ which showed that chiropractic treatment was better than physiotherapy for low back pain. What many orthopaedic consultants said about this trial was not polite. Singh's report on Chiropractic was fairly dishonest in that was reliance on medical reports rather than go and actually experience for himself what chiropractors reported from experience.

    The results of that 1993 trial enabled me to get chiropractic treatment on the NHS. I have been having McTimony chiropractic treatment on the NHS since 1994. This treatment will not cure what I have. It does help keep the pain within certain limits. My last MRI scan showed that I have impingements on the nerve roots by extended discs in the neck.

    There has been a trial last year which indicated that Alexander Technique was better than Physio therapy for low back pain. This trial has been reported in the BMJ.

    ncbi.nlm.nih.gov/pubmed/190...

    ncbi.nlm.nih.gov/pubmed/187...

    You possibly can get referred by your GP to Kingston Pain Clinic

    kingstonhospital.nhs.uk/dep...

    Request that you receive treatment from their Alexander Teacher in the referral. Hopefully should be possible as you have tried other medical regimes at Chelsea and Westminster Pain clinic.

    Hope I have been helpful.

  • Thanks for the information I will follow this up.

    Regards

    Sue

  • That was kind of you. Great!

  • ''she's making me feel like an addict'' - That is not possible. Only you can make yourself think or feel anything. This is not about her, this is about you. Work with what you

    have and do what you can in order to stay well. No need to suffer at all.

    Ask for the help you need.

  • Sorry it came across like that to you I just feel frustrated and not heard but I'll sort it.

    Regards

    Sue

  • As I said. Ask for the help you need. Never stop. I have been asking for 6 months for all kinds of things. My pain is that complex....but as my doctor pointed out on the phone, so are my moods and I have to treat those with different meds at different times.

    Ask, you deserve to have some relief. (because I said so) lol...how controlling...but maybe you need a kick up the bum!

  • We all have different ways of dealing with our pain. If you feel that your current methods are right for you then you don't need to worry about your friend's reaction. I am frequently advised by friends to try various other things for my pain that I would rather not try. It doesn't mean I won't ever try them, it's just not for me right now.

    I just nod and say, "mmm" now. I know my pain, I know I am doing the best to help myself, and it is no one else's business. (I don't say that bit). Friends often want to fix your problems and it might come across that they're disapproving of you, particularly where medication is concerned. Change the subject to something less controversial.

  • Or you can just ask them to be open with you. So...''tell me what you think about my meds'' That talk only needs to be done once! Then, get on with your life with your real friends. Subject done.

  • Thanks Teadrinker

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