How much pain is bad? — Scope | Disability forum
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How much pain is bad?

Topkitten Member Posts: 1,285 Pioneering
Recently I have been suffering more than usual due to a lack of support from my GP and it has made me wonder how much pain do other chronic pain sufferers consider unacceptable.

Firstly I should explain that I take considerable amounts of pain killers daily. I wear Fentanyl patches totalling 125 micrograms per hour plus 8 paracetamol 500 milligrams and pregabalin 150 milligrams daily. I also have Tramadol 50 milligram capsules to be taken as necessary, although these are of little use as the Fentanyl patches equate to 3,000-6,000 Tramadol tablets per day (depending on which version of Fentanyl is used in the patches). Adding an extra 8 doesn't have much effect. My condition is progressive so currently (every 2-3 months) the pain centres move and the pain gets worse. usually only marginally but sometimes in a much bigger jump. Only twice in the last 13 years has the pain lessened and each time was followed by a large chage for the worse.

My chronic pain is a little unusual as I do not often get breakthrough pain and the pain itself can be controlled exceedingly well by keeping my leg raised. After resting for a period to recover the pain drops to merely being painful, much like a cut is shortly after it happens. However, as soon as I lower the leg to leave the chair the pain flares despite placing my foot on the floor in whichever way is necessary at the time. When I stand the leg feels like it is on fire but walking to the kitchen (about a dozen steps) increases with each step until it feels like the skin is being peeled away. I put up with this as I know little different and because the GP will not provide pain killers sufficient to reduce it much or as frequently as it changes. I also know that if I rest for an appropriate time the pain will go away again. If I don't walk with it then I could not leave my chair.... ever!!!! However, if I did never leave the chair or did go to bed and not leave it the pain would go away completely. I found this out when I put myself into a coma, I was in no pain at all when I finally woke up.

How much pain do others consider too much? Would you do what I do to keep walking?

I should explain that I have already tried complaining to the Practice Manager and I am currently with my 6th and last available surgery, complaining to 3 different managers. I have had around 20 different GP's and only 1 was any real help and she moved away. I have been under the Pain Clinic twice, discharged into the GP's care both times. I have been referred to the Community Pain Clinic twice, the first time misdiagnosed and discharged and recently accepted but could not attend a seminar as I am housebound so was discharged immediately. I have been under Orthopaedics twice. I have been to and A&E by ambulance so many times I have lost count, a few times for a deliberate O/D (one put me in a coma for 8 days) and the rest of the times for taking too much medication trying to combat the pain. I have had an ambulance sent out and refused to go to A&E 4 times as well. I have also had 5 Police safety checks. I had carers for 2 years but was so badly looked after that my complaints eventually got me into trouble and I am now not allowed a Social Worker (not that any of the 3 I had were any good). The position I am in now is that the GP refuses to increases the pain medication further without the hospital or pain clinic recommending it. In addition to complaining to the surgeries I have tried contacting NHS England and they tried to help but cannot do more unless I make the complaint official. I have also complained to my MP who referred it back to the surgery Practice Manager and I was then immediately de-registered. I was also de-registered at a previous surgery for "being difficult".

"I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.


  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    I just spent 30 minutes typing in a post but, because my hands twitched at the wrong moment, I closed the window accidentally and lost it all.

    For a week I had no emotions whatsoever and today it finally started to wear off and I found I could laugh at a joke and respond to others better. Now I am right back feeling useless and low and the pain is killing me, even at rest. I just want to go to sleep and never wake up.

    What is the point of it all, I always get treated like something they stepped in by everyone except ambulance crews and police and they cannot provide any concrete help, just refer me on and cross their fingers. It never works.

    This is such a **** country and a diabolically useless society.

    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • Misscleo
    Misscleo Member Posts: 646 Pioneering
    Well said everyone.
    Agree so much with all of your comments
  • Lillistone1970
    Lillistone1970 Member Posts: 1 Listener
    I'm so very sorry you are suffering soo much and what a disgrace re Pain Management.
    Hi there  I suffered 14yrs of sometimes excruciating pain, before being diagnosed with a rare Spinal disease, only 2 Neurosurgeon in the country that operates on the cysts on my nerve roots. They fill with Cerebral Spinal fluid and compress the nerves. I had surgery last September, the nerve pain is lessened but am left in agony at the surgical site, have been using a wheelchair for 8 years.
    I don't know what your diagnosis is but you are legally entitled to a 2nd opinion which may lead to possible treatment and pain relief. If its Orthopaedic ask to be referred to the Royal National Orthopedic Hospital, they take referrals from all over England and Wales xxx with you understanding your pain 
  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    Thank you for replying @Lillistone1970.

    There is surgery available on the cervical disk to fuse the rupturing disk and I was put on the waiting list for it. I had exactly the same microsurgery on a different disk in 2005. After 14 months I was seen 2 weeks before the surgery but it was cancelled as I had an abcess in my mouth due to a lack of support by Social Care. The same lack of support also meant I had no GP at the time so it took 6 months to sort that out and get back on the list. Over a year later I was given a second date and 2 weeks before that was also cancelled as I was at that time anaemic. Could have been avoided as it was discovered 3 months before in A&E but my GP didn't bother to read their report. I was prescribed 3 tablets to solve it but I used my brain and stopped taking first the tablet that caused the gastritis I was suffering and then, when that was cured, the tablet that caused the anaemia by trying to cure the gastritis. A net gain to both me and the NHS of 5 less prescriptions per day. Why the GP didn't suggest it I have no idea.

    Again a long wait to see the specialist again and I was put on the standard waiting list for a third time, which would have meant waiting more than a year at best. As I had already waited over 3 years I complained to get put on the emergency list to get a 3 month wait. Instead I got a second opinion. This surgeon discovered a bone growth than obscured the disk and meant the microsurgery I was supposed to have was impossible. Instead of changing the surgery type he decided I didn't need the surgery as any change would have meant documenting the senior surgeons mistake. He told me if I wanted another opinion I would have to go 60-70 miles under my own steam to attend a different hospital. At that time it was an impossible proposition and I was too frightened to complain again. Now I am housebound with the pain so have no options at all.

    I think it is disgusting that we get treated this way when people in the health & support services make mistakes. I suppose too many people are now suing for damages and they are frightened to admit such mistakes. As usual, the actions of a few punish everyone else. Selfishness surely abounds in current society.

    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    @Lillistone1970, when I had the cervical surgery on my disc in 2005 there were, at that time, only 2 neurosurgeons trained to do it in the country. I was sent to Romford Hospital in Essex and he did a smashing job with it. Whilst I do get some pain from it it is only if I sleep with the disc that was done precisely on the edge of the pillow, anywhere else is no problem. The pain caused this way is quite low by comparison with the original pain so I was well pleased. The repeat surgery on the disc above would be done by 1 of 3 surgeons now qualified for it but at Colchester General Hospital which has a very bed surgery record. Unfortunately the previous surgeon has gone abroad to work, presumably due to surgery standards falling in the UK.

    I am sorry you are experiencing problems with your surgery. Is there no option for you to deal with it?

    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.


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