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Welcome to our new group on dealing with chronic pain

Chris_ScopeChris_Scope Posts: 695Member Chatterbox
Chronic pain is generally defined as pain that lasts for more than a couple of months. It can be highly disruptive to your life and happiness, and can be caused by a variety of reasons. For whatever reason you suffer from chronic pain, this discussion group is a place to share your experiences and tips, and to ask advice on dealing with chronic pain.

Click the 'New discussion' button in the top right to start a new conversation. Or respond to one of the discussions already taking place.

Replies

  • MisscleoMisscleo Posts: 499Member Chatterbox
    Libbyanne what a nice post and i totaly agree with you
  • LibbyanneLibbyanne Posts: 6Member Whisperer
    Thank you Misscleo you're really kind, sometimes it can be really to say or write words like that but not always easy to live by
  • janejrjanejr Posts: 112Member Chatterbox
    Libbyanne thank you for your advice on chronic pain. You are right  Sometimes I feel pain has taken over my life because when it's bad I can't think of anything else. When I try all the things that usually ease it and it doesn't work I feel that helpless and there's nothing else left but cry. Hate having to take pain killers all the time as don't want to feel wasted all day every day but given the choice of feeling out of it or being in agony then I'll take pain killers. 
  • janejrjanejr Posts: 112Member Chatterbox
    Hi Libbyanne and Kirstie74 your right about friends I have had family members be the same with me. My daughter phoned me the other day and asked how I was and when i told her she sounded annoyed and said I'm not being funny but your always ill. Took me by surprise and all I could say was well it is as it is I can't help it. Wasn't till afterward I suddenly thought she obviously wasn't happy because she wanted me to do something with her or for her. Upset me , I'm already depressed because of my condition and her attitude made me feel worse. 
  • mummymortmummymort Posts: 1Member Listener
    Hi all. I have just joined & was reading your posts . I have the same problem with friends , alot have faded away mainly because i can't manage to go out or they are going somewhere i can't get into, being in a wheelchair.  If i was being honest i can say i have 4 good true friends who keep in touch regularly & my mum who is amazingly. She keeps going when i really feel down & does so much for me, so i would say mum is my best friend. 
  • NiamhNiamh Posts: 1Member Listener
    It is very hard, have any of you managed to keep a job with the pain?
  • vlismassarahvlismassarah Posts: 2Member Listener
    I too have lost many friends..I try to think of something positive like that I have a roof over my head, but there are times I get so low ..thinking of people worse off helps..poor kids in terrible pain..at least I've had 40 years no pain..I'm v v isolated where I live. The morphine makes me so sleepy but I couldn't cope without. Most my friends have no room for a wheelchair so I rely lot on my husband ..but he works..you are right we should be pleased even if we just make it to the sofa
  • debbiedo49debbiedo49 Posts: 2,514Member Brian Blessed
    @Niamh yes I am working part time. Its only 6 hours per week, 1.5 hours per day and thats me returning to supported work after 8 years away. I started with volunteering once per week and really enjoyed it and it lifted my mood. So I took the plunge after 6 months or so. I know what I can and cant do and I stick to it. I crash after it every time. 


    I am a fibrowarrior!
  • rachel0511rachel0511 Posts: 2Member Listener
    Niamh said:
    It is very hard, have any of you managed to keep a job with the pain?
    I had a car accident 11 years ago that has left me with chronic back pain and degenerative disc disease, and recently been diagnosed with fibromyalgia....I have managed to work full time..with very understanding employers...I crawl through the day and then I’m wiped out by the time I get home....I have my moments of tears at home, while putting on a brave face at work, telling everyone i’m fine....but goodness it is hard. I feel like I miss out on lots of family things and time with friends as the effort it takes to go out is just exhausting, it is so refreshing to read such lovely posts about how everyone copes...it doesn’t make you feel quite so alone
  • ClaireSaulClaireSaul Posts: 82Member, Community advisor Chatterbox
    Morning All,
    Firstly apologies for having been absent for a couple of weeks - one of the probs of us "advisors" also being sufferers is that we have our own health flares!!  For me it has been having 3 colonoscopies in 3 weeks with the dreaded bowel prep....this didn't work due to my connective tissue disorder, so on the final occasion I was on clear fluids for 3 days and have struggled to get back on my feet.  Needless to say my pain has flared everywhere and everything has been upset...then father in law had a stroke....
    Enough of me wittering, but I am back and hope to join chats to give support and advice!
    Claire x
    Claire Saul
    Chronic Pain Advisor
    Scope
    [email protected]
    scope.org.uk
  • ClaireSaulClaireSaul Posts: 82Member, Community advisor Chatterbox
    @minxykat - I know I've just replied to another comment, but as one ex nurse to another...I get it!!  My brain fog has become so much worse in the last couple of years, and I no longer take opiates regularly so can't blame them!  My social life has also changed dramatically and I think that family and friends find it difficult to understand how our condition can change so quickly - we are not letting people down at the last minute intentionally, it is not easy to plan in advance, but this doesn't mean that we don't want to be included in plans now.  I must admit that many of my social contacts are now online through groups such as this, facebook, specific health groups (I have Ehlers Danlos) and blogging.  
    The brain fog specifically does cause me grief though as at times I will forget something within minutes of being told/asked.  I forget to answer emails and texts/messages and like you find myself asking the kids the same thing several times.  I have struggled round the house looking for a walking stick, whilst holding it in my hand!!  Recently I managed to attempt a poem to describe brain fog for my blog!
    Good to meet you,
    Claire

    Claire Saul
    Chronic Pain Advisor
    Scope
    [email protected]
    scope.org.uk
  • ClaireSaulClaireSaul Posts: 82Member, Community advisor Chatterbox
    I suffer with arthritis epilepsy and other medical conditions and I find the best thing is to arrange something and look forward to it even you can't go it gives you a boost and something to look forward to. Dont give up and don't let the pain ruin your life. Easier said than done I know but try. All my love and best wishes.
    I try to live by this philosophy too.  On bad days it can be easier said than done,  but it really does help, doesn't it?  There are always people to speak to online who understand, which I have found invaluable.
    Claire
    Claire Saul
    Chronic Pain Advisor
    Scope
    [email protected]
    scope.org.uk
  • evadesignevadesign Posts: 9Member Whisperer
    @Niamh ;
    I have fibromyalgia and a host of other pains, and I do manage to work but it can be hard. It is still so much better (for me) to work and be in more pain than to be unemployed and not working. I work part time as an enabler supporting people with an acquired brain injury. The work is totally varied, minimum wage and zero hours contract - but that does mean I can choose how much and when I work. It keeps me grounded seeing what my clients have to live with, and I have a purpose and am doing something to help people. It's the most rewarding work I have ever done. Often I get so fatigued and am in so much pain that I just want to cry, I can't sleep, I can't stand up or cook, I can't think straight... But it is still better than giving up. For me - I'm not saying it's that same for anyone else as all our experiences are different. Please don't think I would expect everyone to work if they are in chronic pain! I just found unemployment made my anxiety and depression worse. Working has really pushed me out of my anxiety comfort zone, which was horrible at the time, but I survived and now I can be a little bit proud of myself for doing it (I have agoraphobia and have to travel round the city for the job, which I couldn't have done six months ago).
  • karenhollandskarenhollands Posts: 3Member Listener
    I have fibromyalgia and osteoarthritis and 90% of my friends have disappeared  I also lost my hubby to cancer 10 months ago which has been really devastating my family and kids are really good  But it's not the same especially when your hurting all over and on so many meds that some days I feel that I'm the only one in the world alive
  • Tigermoth42Tigermoth42 Posts: 232Member Chatterbox
    Hi @karenhollands, just wanted to send you hugs after reading your post. So sorry for your devastating loss, my sister has experienced the same, her husband was only 51 so my heart goes out to you. I’m always here with an ear if it helps at all. Much love, Gail xxx
  • debbiedo49debbiedo49 Posts: 2,514Member Brian Blessed
    I would like to know how you get other conditions diagnosed on top of fibro or chronic pain please? I have fibro with really bad neck and  shoulder pain and really bad sciatica pain. Also currently plantar fasciitis in heel. Those are the worst bits. I feel it just gets put together under one thing. 


    I am a fibrowarrior!
  • markcumbriamarkcumbria Posts: 26Member Whisperer
    I injured my spine a few years ago I could not walk for 5-6 months then one day I was laying in bed when I heard a big crack my doctor never sent me for a xray or MRI scan and ive struggled walking and carrying anything ever sincs a spine specialist done tests on my today on the 29/08/2018 and my spine is not curved its straight he said no wonder that your i n so much pain and the paikillers the doctor have me on are not strong enough  they don't even touch the pain and the dwp say iam fit for work when I struggle to bend down or pick anything up and aswel as trying to walk with my stick when I get shooting pains up my spine ive tried different medication but non works what the doctor gives me the hospital have said they will send my report to him and also telling them to pug my medication up to a higher dosage
  • AilsAils Posts: 25Member Talkative

    I have Spina Bifida and walk with crutches indoors and use my wheelchair outdoors.  I have always experienced pain in my left hip (being dislocated since birth), but this was getting worse over time so through speaking to both my GP and my physiotherapist, I was encouraged to look into an hip replacement as the pain was keeping me awake at night and interfering with my working life.  So after pursuing this at a couple of hospitals without much joy, the third consultation I had was more successful and I was delighted when the consultant there agreed to carry out the surgery on me.  Unfortunately, the hip replacement was the biggest mistake of my life as I have replaced the pain with an even worse pain which totally debilitates me at times!  My experience in hospital wasn't helped by the fact that I took an U.T.I. and then Sepsis so it was a horrible experience all round for me!  I feel as though my life has worsened a lot since then as I was more independent before the operation; being able to work and drive and do a lot more for myself which I am unable to do now.  I have taken various forms of medication and one by one they have ended up not working and my GP says my only option now, medication wise, would be Morphine which I am reluctant to take. 

    I have now been referred to a Pain Management Clinic to see if they can help me in any way.  I had my first appointment last week and saw a Psychologist who explained to me they could help me with my pain using CBT methods, which I am open to and will definitely try, but am sceptical at the same time as not sure whether it is actually going to work or not.  I am also due to see a Pain Consultant at the end of the month. 

    While I know it probably sounds like I am feeling sorry for myself now (which is probably true to a point) I do try and make the most of life, but it is hard at times.  I know that my disability probably did not help the success of my operation, but I do feel somewhat short-changed by the consultant and hospital that the operation or its negative impacts were properly explained to me.  Whilst I regret having my own hip replacement, in no way am I suggesting that anyone should not go through such an operation if they get the chance, just maybe be aware of all the facts and be happy with everything before you take such a big step. 

    If you haven't fallen asleep by now reading my rant then thank you very much and I wish everyone well in their continued health.  :-)

  • Millrine1967Millrine1967 Posts: 1Member Listener
    I’m in the same group of chronic pain, I had my 1st op to my spine done in 2005, 2nd in 2007 then the titanium rods and screws fitted. I’m on more opiates than ever and just recently I was medically retired. I’ve attended many pain management groups and get some sort of relief when talking to others in the same boat but no sooner do I stop going then I’m in agony again.
  • Billylynn4668Billylynn4668 Posts: 8Member Listener
    Hi all you are all right no one knows how much pain we get if you have a broken hand people see that but with our condition it is unseen so everyone thinks your fine 
    I have cervical Myelopathy for the past eight years I had  a fusion in 2012 been to pysio also acupuncture for a frozen shoulder sore hips and for the last two years it has been my feet I worked but sadly had to give it up as I was in agony went on to the sick but DWP has told me I am fit for work  don’t know what I am going to do so as I said they don’t know pain we feel taking painkillers all
    day long that makes you feeel sleepy and on an other plain but  
     
  • cupcakemandycupcakemandy Posts: 18Member Listener
    i suffer with alot of pain to,but i cant take certain medication,so iam limited to what i can take

  • markcumbriamarkcumbria Posts: 26Member Whisperer
    The only way would be to get a appointment with your doctor they would know what painkillers you are OK to take  with any other medication your currently taking
  • 20_leah_9820_leah_98 Posts: 1Member Listener
    Im 20. 
    At 19 I started a new job where I injured my back, it started off as somthing I thought was nothing even though it was so painful I just put it down to be never experiencing anything like this before and maybe I’m just being a bit of a sap. my injury was in December and everyday things just continued to get worse, March I started to see a private Chriopractor who told me I had a slipped disc causing sciatic nerve pain and a curve in my spine which she couldn’t be sure why the curve was there. 
    X rays from the doctor show scoliosis is present. They seem to think I’ve had it all my life which is not true, the curve came slowwly after the disc because of all the pain on the right side of body I guess my body’s tried to adapt and find a More comfortable way to be I guess. 
    At this point the gps telling me there is absolutely no way I have a slipped disc and that the chiropractors methods are not ones she agrees with etc. 

    Then finally I get a mri showing I have 2 slipped disc. 

    So from the discs not being treated soon enough I have:
    functional scoliosis which causes a lot of pain to my ribs and organs even though that sounds weird they feel literally irritated,  
    A twisted pelvis= pain!
    leg length descriptioncy causing neck knee and shoulder pain.
    the good side of my body is damage from carrying the rite off side. 
    I’ve tried to stay as positive as one possibly can I had to leave my job in August from just being unable to do it anymore literally when I say unable I don’t mean just not wanting to sue to pain I mean physically not being able to move. 
    I get this isn’t going to heal fast but I need some progress you know. I feel incredibly depressed and I don’t see a point anymore each day is such a hassle to get thru and for what ..... another painful day .. how do people cope !! Cause when I go to the gp and tell her I’m losing my marbles I went from loving people and life to hating it all I’m jealous of every person that enjoys anything I’m sick with envy she just tells me it’s normal .... just because it’s normal for someone stuck in my situation does not mean it’s the way one should live! I can’t live my life I’m physically ruined it feels and now I’m mentally worse than I am physically, emotionally I’m not okay either. I feel sorry for my self and I know that isn’t going to help but I can’t change it I feel like I’m grieving for the life I used to have I feel to young to have to deal with this, and seriously why aren’t other people supportive ???? Grr life is definitely pain and disappointment! I’m at what I would call a low point hence why I’ve ranted for a while but when I’m like this there’s nothing I can do to cope and it feels like I’ve got only one option left and that’s death. How do other people cope ? And I mean mentally cope not cope with passing the time by whilst not being able to work etc 
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