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suffering with chronic pain

nick50nick50 Posts: 3Member Listener
edited March 2017 in Dealing with chronic pain
This discussion was created from comments split from: Welcome to our new group on dealing with chronic pain.

Replies

  • nick50nick50 Posts: 3Member Listener
    Hi all I have been suffering with chronic pain in my back for nearly two years and it really drags me down. I feel that without an actual diagnosis nobody believes me and the DWP just make things so difficult with getting pip. I have tried pain management but found sitting in a group talking about my pain to be not my kind of thing. I now also have heart failure and sleep apnoea and all of this together is a complete nightmare. I wish there was more recognition and help for this problem as it is very real and unbearable
  • StockingStocking Posts: 4Member Listener
    I'm in pain all the time. If no one as pain thay just don't understand. I get a bit fed up with moaning and try & get on with the day. I am writing this still in my dressing gown. I'm now going to get in the shower & get dressed. & do a bit of shopping. There is not help in Wolverhampton. Try & enjoy your day. God bless. 
  • Zec RichardsonZec Richardson Posts: 151Member Pioneering
    Hi @nick50
    I am also in chronic pain 24/7 since 1996 and in I fully understand your point of view. 
    Many years ago I was asked to attend the pain management course and I wasn't impressed at sitting for 5 days listening about pain and how to help, after all sitting there caused more pain. 

    In 2008 my pain kicked up a gear and I'm now a full time wheelchair user and basically housebound. I think I might have had a breakdown or given in if it wasn't for that pain management course. 

    At the time I felt it had not helped but in fact it had equipped me with the strategies and understanding to be able to cope. I use several coping mechanisms, the first is that I won't get down about it because a lower mood makes us more susceptible to pain and so we get more down and we spiral. 
    The best tool against pain is Distraction, that's why when the lights are out at night and there is no sound, we are in more pain. 
    I also meditate, now when I first was told about this I wasn't impressed, I wasn't the sort to meditate and let them know that. However now it's invaluable and I meditate every day, it takes time to get the hang of it though. 

    As for no one believing you? 
    That is the worst thing, we are constantly having to try and prove that we are in pain. Doctors, friends, family even doubt us and its horrible and then we have to convince an assessor that we are not fit for work and entitled to benefits. 

    I have been told by doctors that there is nothing they can do to help. They wanted to discharge me from pain management and the other clinics and I said no, because if I can't put on benefits forms that I am under the care of these clinics, the benefits assessor would take this as a sign that I'm okay, why would someone who claims to be this disabled and in pain not be seen by doctors. I explained this to the consultants and so I am still under their care. 

    It took me many years to settle, to stop pushing to see doctors and have tests in a bid to prove I was in pain. The result was I felt better in myself, constantly seeing doctors and battling for diagnosis wasn't helping me and so I stopped. I know I'm in pain and that is all that matters. Learning to accept our situation can be very beneficial and it's very hard to do. 

    Zec
  • Sam_ScopeSam_Scope Posts: 7,732Member Disability Gamechanger
    @mossycow do you have any advice? 
    Scope
    Senior online community officer
  • snuggie11snuggie11 Posts: 5Member Listener
    Hi I have had back pain for 20 years due to an accident, have been in chronic pain for last 10 years, had various scans /mri on neck & back, I have 3 disc bulges in my neck &  have a degenerative disease in my spine, there is no operation they can do as there is too much wrong. I have pain radiating down my arms & hips/ legs, my right arm is too painful to lift up. I use crutches to get about as cant walk far without them. I take quite a few diff meds &  morphine patches, which I say don't help a lot but if I didn't take them would be housebound.
  • sharrontsharront Posts: 9Member Listener
    edited August 2017
    @Stocking , @Zec%20Richardson

    Fully agree about people not understanding or believing. I often get the feeling that until recently even my partner didn't fully understand the strength of the pain until a sister in A&E shown him the x-ray results one night and explained the severity of the disintegrated bone structure and how it was purely bone on bone etc. I was quite pleased she brought him in room to see them. I do get PIP now after three failed applications. Luckily I got the mobility component so have my car adapted allowing me to drive once again as knees were stopping that before. Just need to get a ground floor flat now instead if first floor. X
  • steve51steve51 Posts: 6,165Community champion Disability Gamechanger
    edited August 2017
    Hi @nick50.

     I believe with you 150%. 

    I have had my chronic pain since 2005.

    This was fowining some radiation treatment under the NHS.

    l have to date gone though 1 GP, 3 pain clinics, , 8  NHS Pain Consultants, 3 NHS hospitals, 1 Pain Nutse.

    My local hospital has also refused to treatment !!!!

    The NHS has now refused to "Funding" for my last hope of pain relief.
     
    The 3 NHS Hospitals / Consultants have all told me that I was a "Ideal Candidate" for the Treatment????

    The NHS hasn't given me any other treatment instead.

     I have gone from "Birmingham to Oxford to Liverpool" where the "Consultants" they have all told me that I can be treated ????

    I'm now House/Bed bound at the age off "51"

    Great stuff !!!!!
  • Chronic1Chronic1 Posts: 2Member Listener
    Stocking said:
    I'm in pain all the time. If no one as pain thay just don't understand. I get a bit fed up with moaning and try & get on with the day. I am writing this still in my dressing gown. I'm now going to get in the shower & get dressed. & do a bit of shopping. There is not help in Wolverhampton. Try & enjoy your day. God bless. 
    I know this feeling,I suffer with chronic back and leg pain.

  • DaniConDaniCon Posts: 2Member Listener
    I know the feeling of having nowhere that I can freely express how much pain I have in the real world
  • MisscleoMisscleo Posts: 630Member Pioneering
    Same here hospitals are a waste of money. If you havnt got a broken lime for them to look at they are lost
    The under 50's doctor's and staff are thick
  • Gail1205Gail1205 Posts: 6Member Listener
    Chronic1 said:
    Stocking said:
    I'm in pain all the time. If no one as pain thay just don't understand. I get a bit fed up with moaning and try & get on with the day. I am writing this still in my dressing gown. I'm now going to get in the shower & get dressed. & do a bit of shopping. There is not help in Wolverhampton. Try & enjoy your day. God bless. 
    I know this feeling,I suffer with chronic back and leg pain.

    I'm in the same position and I would love someone local to talk too. Most of my day is trying to get comfortable as the fatigue takes over and all I want to do is sleep but even lying down is very painful and when I try get comfortable the pain starts and I have to move or the pain will make me so sick I will want to be sick.
  • kjparkinskjparkins Posts: 5Member Listener
    I am living with chronic pain since 1998, I found that people didn't believe me and this on its own made me depressed, however after a second round of nerve conduction test was finally diagnosed with caudual nerve damage which made a big difference in the way I was treated, but still find that if the disability can't be seen many people still see nothing wrong.
    i now look at it as I don't care what others think I know something is wrong so don't give a damn about there thoughts, I matter not them and I learnt this from the pain management course I went on it teaches you not only physical how to cope but mentally and you meet others in the same boat as yourself.
    i hope that at some point you get answers but in the meantime you know yourself something is wrong that's all the matters not how someone else sees you.
  • janejrjanejr Posts: 125Member Pioneering
    Hello nick50 I'm sorry your having such a hard time. I too suffer chronic pain. I've only recently joined this group and find it wonderful to chat to others who understand me as people who don't suffer like us definitely can't . Even my partner doesn't get it. If I'm not in tears he thinks it's ok to rely on me for things like cooking and cleaning but that's an on going problem that I feel will end our relationship. It does get you down the pain is constant and all you can think of and all you talk about because it's in your face 24/7wearingyou down driving you nuts. I have so many sleepless nights it tells on my face my skin pale and blotchy my dark rings around my eyes. I look like a panda lol. I'm trying to get into some hobbies to distract a little bit of the pain so it's not so unbearable but when it's really bad all I can do is cry. Hate what this has all done to my life I was so fit and active all my life and had a job working with autistic teens with learning disabilities and challenging behaviour. Long hours tough work rewarding beyond belief. 
    Even my daughter doesn't understand the pain I'm in and doesn't speak to me anymore as she couldn't understand why I couldn't support her with her kids and feels I've let her down. She thinks I'm a bad mother even though I've supported all the way through her life. It's like this if they aren't in chronic pain 24/7 and they can't see your pain they don't understand it. Nick you will have lots of support here at scope we all in the same boat and if you ever want to chat or have a moan about things I'm here to listen. 
    Well it's 5am so I'm going to take my panda eyes to bed and see if I can sleep. Goodnight
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