Welcome to our new group on dealing with chronic pain - Page 2 — Scope | Disability forum
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Welcome to our new group on dealing with chronic pain

2

Comments

  • karenhollands
    karenhollands Community member Posts: 3 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
  • Tigermoth42
    Tigermoth42 Community member Posts: 243 Pioneering
    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
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    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. 
  • markcumbria
    markcumbria Community member Posts: 28 Courageous
    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
  • Ails
    Ails Community member Posts: 2,256 Disability Gamechanger

    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.  :-)

    Winner of the Scope New Volunteer Award 2019.   :)
  • Millrine1967
    Millrine1967 Scope Member Posts: 1 Connected
    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.
  • Billylynn4668
    Billylynn4668 Community member Posts: 8 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  
     
  • cupcakemandy
    cupcakemandy Community member Posts: 18 Listener
    i suffer with alot of pain to,but i cant take certain medication,so iam limited to what i can take

  • markcumbria
    markcumbria Community member Posts: 28 Courageous
    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_98
    20_leah_98 Community member Posts: 1 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 
  • colincla
    colincla Community member Posts: 3 Listener
    Hi sorry for your struggles my head can go to some bad places also as for last 4 years ive been barely able to walk needing a new knee,so now ive just got my new knee and ive become totally paralysed and i dont know for how long,ive forgot what most of us take for granted.But things change and we need to adapt,especially our minds.Just because you and the world hav always had sets of values and beliefs which got you by happily doesnt mean you and the world were right about assumptions.To cut a long story short you can choose to think anything you want on any situation but the best place to get is to not think, be at peace and let it happen because its going to happen anyway.The most amazing thing ever is the brain either for destruction or enlightenment or peace.Take away all your limbs and you can be still sitting with a mind in awe or a mind in condemnation.Its easy said but what else is there when the superficial world we've created falls apart.
    Rgds C
  • benjamintolmer
    benjamintolmer Community member Posts: 28 Connected
    My grandmother is suffering from chronic pain from last 2 years in joints of the leg. We try our best but can't find the exact solution. 
  • Argyl14
    Argyl14 Community member Posts: 4 Listener
    After accident in 2016, told minor injuries. One being   sprained  ankle. Aye right, a year of thinking I was a silly boy, crushed  foot, and loads more.

    Too late to fix, OP just removed bones. 

    Since accident, not had a pain free  day.

    Also accident caused nerve damage, all I'll say is, you feel like giving  up.

    Finally got treatment for nerve damage, needs repeated every 3/4 months. And every time, NHS fail. Sometimes  wait 6months.  So 3months of hell.

    Treatment only really reduces pain by 50%, but anything  helps.

    As for crush, as both went un noticed for a year, pain was so intense, I did try to end it. But still here,  but as 3 times was ODs, its goosed my liver, or kidney.

    So can never take any painkillers again.

    So bad, bad, bad pain, no painkillers.

    Nearly turned to drink, glad  not, even more issues that.

    CBT cant get in NHS..

    So times I sleep for days, as previous week not able  to sleep due to pain.

    Pain nurses, I do get feeling they are pushed to limit, and come across  they dont  care.

    Last told, just need to get on with it, al, that  could  be done has been.

    But constant  appointments for ortho, pain clinic, liver or kidney unit.

    You do feel like, leave me alone, nowt can be done. So pointless.. unless you can chop foot off, or send me to Maldives  to live, no idea if it would help, but hey





  • Tammyjane33
    Tammyjane33 Community member Posts: 765 Pioneering
    Hi hope you are all well today. Chronic pain is something I deal with on a daily basis and it can be very difficult being in pain and anxiety on top of that. If anyone would like to talk I'm here. 
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    Did I read somewhere that cbd will be available on the nhs or was I dreaming? ?
  • debbiedo49
    debbiedo49 Community member Posts: 2,904 Disability Gamechanger
    I have been changing over from Gabapentin to pregablin and it was so hard to come off one to start another. I did it quicker than I was supposed to but it wasn’t intentional and I have found getting the correct dose of pregablin difficult as I had to start low. I know that there isn’t a solution but you do forget how much pain can result from being off meds and the time and energy it takes to get some balance. My g p said make a phone appointment in 4 weeks unless there is a need to see me in person, That does make me think that they don’t have a clue how much this can affect you or that they just don’t have the resources. Writing this I’ve remembered my practise does have a pain management clinic aka a pharmacist which I will try to remember in future to use although she scared me off last time. You feel like a burden having to bother them with your pain management which is wrong. 
  • Adrian_Scope
    Adrian_Scope Posts: 10,935 Scope online community team
    Hi @debbiedo49, it's good your practise has a pain management clinic, I'm sorry she scared you off last time though. Was it anything in particular that put you off?
    Community Manager
    Scope

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