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Never ending pain

sofia55sofia55 Posts: 6Member Listener
hi this is my first time on here and am very nervous. In a nutshell I have osteoarthritis, spondylosis top and bottom spine, polyarthropathy, fibromyalgia also kidney disease and chronic fatigue and am just about at the end of my tether with the pain 24/7. Forgive me but I'm not sure what else to say.

Replies

  • debkenzodebkenzo Posts: 110Member Pioneering
    Hello sofia
    My name is Debbie.  Welcome to the site.  I am quite new as well and have found the site to be amazingly informative, friendly and safe to use.  I truly am sorry about the pain you are suffering.  I do hope that you find here the help that you need.
    Debbie
  • sofia55sofia55 Posts: 6Member Listener
    Hi Debbie,
    Thank you for your welcome and your message it is very kind of you. I hope you are feeling OK today. Take care and thank you again for your kindness x
  • debkenzodebkenzo Posts: 110Member Pioneering
    You are very welcome Sofia and you will find lots and lots of kindness on this site.  I wish i knew about it sooner but there is so much information and help.  x
  • Sam_ScopeSam_Scope Posts: 7,732Administrator Scope community team
    Hi @sofia55
    Welcome to the community, do you get any support from specialised pain clinics?
    Scope
    Senior online community officer
  • sofia55sofia55 Posts: 6Member Listener
    Hi, thank you for your welcome.
    Well I have been to one pain clinic where I was taken off a lot of my medication and put on something different which was no help at all and also been told not to go back to physio because when they are trying to treat one thing it's making others worse. I have an appointment with a different pain clinic next year so just have to wait. 
    I must admit that I reach breaking point a few times. 
  • debkenzodebkenzo Posts: 110Member Pioneering
    Hi sofia
    Pain is a never ending monster that has so much control over us.  How do you cope when things get too much for you?
    Debbie x
  • sleepy1sleepy1 Posts: 299Member Pioneering
    Hi Sofia and Debbie
    I have also suffered from constant pain (since 2011) and have tried just about every medication going, the only ones that made any difference for me were the opiate ones such as Tramadol & Morphine.  But as you probably know already the side effects can be just as bad so you have to weigh up the pros and cons!

    Like you Sofia I am at the end of my tether because the pain can be too much to bare and I don't think doctors really understand just how bad it can be. 
    When the job police asked me what type of work I could do I said I would be good at being a secret agent......Why?.... because if I got captured I'm well used to being tortured.  Mind you they might struggle to wake me up first, yes the chronic fatigue a double whammy.  It does give some respite from pain while your knocked out but when you wake up its like who, where, what!  Then just another fun day of more pain and more sleep to look forward to.

    My situation has become worse and I have been badgering my GP for months to get a referral back to see the neurologist. During a telephone appointment yesterday she reluctantly agreed saying "it is what it is things are unlikely to get any better you will just have to learn to live with it and I don't think a neuro specialist will tell you anything different"  Then tried to fob me off with yet another antidepressent that she thinks might help.  No thanks!

    Sorry for the long text girls, wish I could help more but looking for answers myself, if I find anything worth posting will pass it on.

    Hugs Rosie











  • secondbeesecondbee Posts: 23Member Courageous
    Hi all! 

    I have been put put into a study looking at reducing pain medication usage by introducing mindfulness meditations and I’m blown away at how well they’ve worked for me. 

    Simple relaxation meditation sessions can half my pain score. It’s nothing short of miraculous given I’ve been in pain for years and lost all hope more times than I can count. 

    If if you’re interested to hear more let me know and I’ll figure out how to give you links to the book and guided meditations I use. 
  • debkenzodebkenzo Posts: 110Member Pioneering
    Hello sleepy1
    Thank you for your amazing reply.  Lots of what you say resonates with my life.  Doctors find it difficult to understand about our pain because they do not experience it.  If i were to transfer my pain to them then they would scream and drop down.  I have suffered with pain for many years and have found an inner resilience to deal with it for most of the time but other times i just want my ankles cutting off because the pain is so unbearable.  Osteoarthritis in both ankles and lower back which prevents me from standing or sitting for long.  I'm a human yoyo!!  Has anyone heard about using cannabis oil to ease pain?
  • TopkittenTopkitten Posts: 1,003Member Pioneering
    I am always interested in the discussion of pain because even when measurable pain is still subjective. We could all sit down and write out our pain levels and medication levels and the surprises that would occur would be just as unfathomable as the GP's understanding of any of it. Side effects are always brought into the equation but there is a simple question in answer to them. Are you in a better situation with or without them?

    I have been on opiates for a decade now and yes, sometimes the side effects are not good but then the pain is not good either. In simple terms I am better off with the medication than constantly calling out ambulances like I used to. My current increase has brought into the equation functioning ability so now I have something else to consider but last year I overdosed because of the pain and ended up in a coma. Am I better off struggling on or not? Time will tell on that one.

    Anyway, to the point.

    Physio is not usually worth considering once nerve damage comes into the equation. Their knowledge and expertise follows a very narrow focus and can do more harm than good. Most cases that are referred to them are the result of muscle pain and for that they are good. Beyond that their help and assistance is of little use.

    I am familiar with spondylosis and chronic fatigue. I wish I could swap mine for the first and my daughter has the second. Osteoarthritis is an odd beast. Sometimes the pain is dreadful and sometimes causes little pain. However, once you start combining the effects of multiple conditions then the GP's, already struggling with things like fibro, lose all points of reference and have no reference guide to follow. At this point they become very conservative. I know.... I've been through all that.

    Your problem seems to be that everything you suffer is on the sometime list. Sometimes they hurt and sometimes not, depending on the person. Consequently, in such cases, they try to push you back into employment. Just stick to telling them the problems and eventually they will get the message.

    From your perspective keep remembering that your body will adjust and pain ameliorates over time. it WILL get easier to cope so long as you can find your own way to limit your pain generation.

    If it helps then maybe this example will give you courage.

    My pain killers are at a level 6 times stronger than the strongest pain killers given to recovering cancer patients. I can walk a little. I can drive well. I use a wheelchair or a scooter when necessary so I can still be effectively mobile. I have to deal with people telling me "Well, at least you don't have cancer" often. I also have people tell me "I've had back pain, I know how you feel". Some days I go through my normal stuff whilst suffering sciatica. If I tell people they simply don't believe me. If I explain my pain killers they tell me I must be high all the time, ofc I never am and they simply do not understand. Pain is just pain you just learn to manage it where possible and cope when not possible. Pain itself does not stop you living it just makes it difficult. Just never give up like I did.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • sofia55sofia55 Posts: 6Member Listener
    debkenzo said:
    Hi sofia
    Pain is a never ending monster that has so much control over us.  How do you cope when things get too much for you?
    Debbie x

  • sofia55sofia55 Posts: 6Member Listener
    Hi Debbie, 
    To be honest I sit and cry and I seem to make everyone's life miserable or so they tell me. 
    How do you cope??
    How are you feeling today?
    X
  • sleepy1sleepy1 Posts: 299Member Pioneering
    Hello again all
    Not sure how to reply to individual posts?  So I will just say a big thank's to everyone.  We are all looking/hoping for a cure of some sort, I'm happy if I get a good day when I can just feel normal.  Trouble is on the rare occasions I get one I go mental trying to move mountains......then spend a week in bed recovering : )

    Secondbee, yes count me in, anything that can take your mind off the pain is good, let us know how you get on with the study.

    Debbie, I have also contemplated the idea of having my feet and hands chopped off to get rid of the pain, people have legs chopped off and still feel the pain so even if we could get someone to do it seems unlikely we would be put out of our misery.  Not used the canabis oil so cant comment on that other than to say as a skin rub don't think it would do much good for very long.

    However you have jogged my memory and there is a company called GW pharma who have a legal product called Sativex, Google it.  It is a mouth spray that has marijumana  in it to help with pain but without the off your face drug element.  I tried to get a prescription for this at my pain clinic a few years ago but they knew nothing about it.  Or maybe they did but thought it was to expensive?  More research needed on that to see if people who have used it got any relief.

    Another day to be bitter ; ))

    Hugs Rosie









  • Sam_ScopeSam_Scope Posts: 7,732Administrator Scope community team
    @secondbee the mindfullness sounds so interesting, could you get in touch at [email protected] so we can chat? It could be a great guest post for us all on the community :)
    Scope
    Senior online community officer
  • debkenzodebkenzo Posts: 110Member Pioneering
    Thanks for the info sleepy1.  I'll have a look online for the Sativex.  Wish you well x
  • debkenzodebkenzo Posts: 110Member Pioneering
    Hi sofia
    Thank you for your reply.  I am so sorry to hear you say that people tell you that you make them miserable.  Do people actually tell you that?  Other people have no idea what it is like to live in pain 24/7.  Totally unaware!!   Todays pain is slightly easier as the temperature has risen.  I recently bought myself a rollator to help me get around as I am making my partners arm sore by keep linking onto him and my crutch....lol! I am so young in my mind at 54yrs and needing to use a rollator is awful but I desperately need it.  I look around and see rollators everywhere, I never realised how many of them were out there.  I've joined the rollator brigade.  Going to tinsel it up for christmas :)
    How are you today x
  • secondbeesecondbee Posts: 23Member Courageous
    edited December 2017
    @sleepy1 if you hit the @ symbol and then type a person's handle in the forum will tag them. It even comes up with a pop up menu when you start typing so you don't have to remember everything perfectly (something I have trouble with) 
  • sofia55sofia55 Posts: 6Member Listener
    Hi Debbie, 
    The weather is a bit warmer here and I think my pain is a bit easier but I have had to go back to the doctors. My depression is a lot worse so she put my fluoxetine up a bit. Life is so bad at times and am only 55.
    I don't know if you want to but I find it very difficult to remember how to reply to you on here. Would you like to keep in touch by email. Am [email protected] x

  • debkenzodebkenzo Posts: 110Member Pioneering
    Hi Sofia
    Yes I can email you if you like. 
    Give us a moment to sort it out on my computer.
    Debbie x
  • Wrexhamreds17Wrexhamreds17 Posts: 2Member Listener
    Been suffering with chronic pain since being discharged from Walton Hospital because they didn’t have an answer 6 years ago . Ended up with chronic muscle pain all through my body and they eventually decided to call it fibromyalgia  which is the doctors new word for a virus. Suffered with chronic arthritis in my neck and had trouble moving my head . Had a big break through over the last few weeks with information passed on to me by a friend and it basically treats ailments like fibromyalgia arthritis and a lot of other ailments and is a treatment called cryotherapy see web page to the chap I visited Pain Solutions in Lymm by Warrington and basically it freezes the body down to minus 160 deg. In a chamber and also deep therapy massage . See web page and read about it and read reviews over what ailments it treats.  I have been for one treatment only on the deep massage therapy bed and the pain in my neck has virtually gone after suffering for 6 years.i have 3 more treatments to sort the rest of my body But highly recommend this treatment because believe me it definitely works GIVE IT A GO 
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