I've been a chronic pain sufferer for 23yrs now and I could go on about what I've have done etc. But it's got to the point where I'm never pain free especially with the amount of pain medication that I'm on. Just a quick outline, I was pregnant in 1993, and 3 discs had come out and was hospitalised for 7mths. 1 was told they would go back but never did. Had an operation which never worked. I then was diagnosed with RSD which for some reason was put under the bracket of (A chronic pain sufferer). I had all types of treatment ranging from Liquidcaine (a anaesthetic, which never worked), Gwynathadine blocks, until I got APS. A pain machine that was put into me and controlled by a remote, that never worked. Acupuncture, you name it I've tried but nothing worked. I've also got lumbar facet joint disease, arthritis in the back. Thrombosis, under active thyroid etc. My lists goes on.
I cannot take no antiflamtory medication because of my allergies, and the amount of medication I'm on, 3 types of morphine, anti depressants (for pain), antibiotics for the rest of my life because of recurrent of cellulitis. My GP has written to the pain management team to re assess, but a years gone by and not only have they moved (they where at Queens Sq), I have not heard a word. They keep on saying there is such a long waiting list. (Because of cut backs). I'm at my wits end, I always get on top of one thing, but the pain never goes. Now I can longer lay flat, I can't have anymore MRI's, or CT scans. Where else can or what can I do. Please help.
Hi I'm sorry I'm not going to be able to help you but just to let you know you are not on your own and I do and feel how you are feel ing .i myself have been in pain since the age of 14 am now 70 my problems like yours a lot ie knee replacement 4 hip problems
Back disc removed 1997 damaged nerves not healed
A/f for the last 8years kidney transplant 25 years ago this I have to be very grateful for which I am but because of pills you take to keep him going doesn't allow you to take certain ones for pain etc and the list goes on
No I don't like this pain try my hardest to get on with it but at times I do have my quiet moments where I feel sorry for myself but does that help no
I'm not helping you am I but I am thinking if you and hope one day they will be able to help you out
I do not feel sorry for myself, what I'm trying to get across is having to wait for over a year to see the pain management team, and I think it's terrible that you have to go through the pain management team not just for pain killers but for simple things like using the hydra pool (I need a hoist to get in) so I can't go to a normal pool. plus having hardly any immune antibodies, a normal pool would be dangerous for me, plus they have no means for me to get in. With APS (Hughes syndrome), I have to take meds to keep me alive, and so on. I would love not to take any, but people like myself, I DO have to take them, so if I need other medications I need to see the P/M team to make sure that no meds reacts with my others. I also have over 50 allergies at least, so different antihistamines reacts with PAIN killers that I do need. I don't get any rest from pain, and I do need to sort out my medication as its not changed for 2yrs but things have been added because of new health issues that I get since having a RTA (in a ambulance). And since that my health has deteriorated very fast.
The only thing that I would like to see is that there was groups available for people that can't get out. Loneliness is the worse disease you could ever wish for and the medication for that is to see a person to chat to. So looking at 4 walls 24/7, think how many people are like that.
Sorry Tina it seems I have wrote it wrongly I do understand what it is like to be home alone I lost my husband last year and do understand what pain us all about
Also understand not getting help I was left untill it was to late and now having skin cancer the not nice one
So one of us made a boob me writing it wrong or you reading it wrong
Sorry for your loss, I've just lost my dad, he was my rock. He bought 3 of us on his own, and he was quite young these days, but he used to kept me going. But now his gone, although I could not get to see him as often and vice versa, but we always chatted everyday, he was my health tonic. But I was still alone 24/7 then.
Hello Firefox ie. I would think you need to pressure your GP about writing to the Pain Management team and requesting an urgent appointment. You do seem to be in a great deal of pain which is not responding to the various medications. Sounds like a rethink is required. Sometimes changing the type of medication can help. For instance morphine to Fentanyl patches. Some people have a great deal of relief from them.
Physical therapy ? Has that been offered ? You say lumber facet disease. Do you mean osteoarthritis ?
I hope you get a solution if only a reduction in pain. Pressure your GP to see the Pain team. They have the specialists in pain control.
My GP has been constantly trying to get me a urgent app. Or a cancellation, but still waiting.
I would have thought having APS, Under active thyroid, and many other health issues, you would have thought that I would have had an appointment by now, but it's not up to hospital doctors anymore, it's down to the appointments which is ridiculous.
I'm already using the patches, I'm on MST, Sevedol, paratemol, plus 2 antidepressants for RSD, and so on. I'm fed up every time they find something else and fob me off with another tablet.
Thank you for your help.
Tina
Hi, deejames,
Sorry I missed your question at the bottom of your message. Lumbar facet joint disease is that the side of your discs you have cartilages. Mine are wearing away, so some have completely gone, so I have bone rubbing on bone, or bones are joining together which is causing me to no longer stand upright, also stops me from laying flat.
If I had been seen by the pain management team after my RTA, instead of waiting for a year, then had a couple of treatments, they decided not to carry on because the amount of swelling around the spine. They are now saying because of my APS, they could not carry on until that was under control. Then again, lost in the system. (But I have had this with most of my health issues). LOST in the system.
I feel so sorry for you. You have had a lot going on and at the end of the day left to get on with it which isn't right.
I believe if you haven't, you should be under the umbrella of pain management as it is their job to make your life as comfortable as possible and given some kind of support.
Once again feel for you and hope you see someone in the near future which you should insist on seeing.
Jen X
Hi,
Thank you very much, but there are worse of people than myself. So I suppose I have to wait my term.
An alternative if the money were to be available is to get your GP to give you a private referral to the Consultant of your choice - this can sometimes kickstart the NHS appointment process. You would need to think in terms of between £100 and £200 for this.
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