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Welcome to our new group on dealing with chronic pain
Chris_Alumni
Scope alumni Posts: 695 Pioneering
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.
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
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
Chronic Pain Advisor
Scope
[email protected]
scope.org.uk
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
Chronic Pain Advisor
Scope
[email protected]
scope.org.uk
Claire
Chronic Pain Advisor
Scope
[email protected]
scope.org.uk
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).
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. :-)
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
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
Rgds C
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
Scope
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Scope
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today feels like 8 rounds with Mike Tyson
I read all the posts and share much of what we all are going through.
Wish I could write more,will try to get to desktop tomorrow.
Meanwhile, my heart goes out to everyone.
Scope
Your feedback is really important to the development of the online community, so please remember to complete our online community annual survey.