the problem all the drugs they tried did not effect the pain and altered insulin effectiveness and upset my stomach or other things and 3 pain clinics say they can't help. pre-gablin gave me low warning signs randomly while bm's were med to high
The pain clinic in Stamford do wonders. I am under them for my pain. They have a completely different attitude towards drugs and acceptance etc. Brilliant.
Painkilling drugs can badly affect your colon. My colon was very slow and then it pretty much stopped due to main meds and therefore I found Stamford superb. Colon never returned to just properly slow, so now have to have meds for that but I am off pain meds totally but do pay to see a **** good physio twice a week.
Pain unfortunately wont be counted necessarily under being exceptional for funding, as the panel will probably know many, many people with pain.
I was discussing pain levels with physio today and how my hubby said his pain with his aortic dissection happening - he described it as a 5. I told ambulance crew he had never felt pain before so he wouldnt know what pain was.. either a 1 or a 10. Told them if he said 5 it would be normally 9/10 for others... he died... probably not helping himself because he didnt know degrees of pain.... we all have different pain and levels we can tolerate. Physio said today when she asks someone what pain is, and they say 10. She asks does it feel like a level 19 when that is your leg being amputated without anaesthetic?? That is what 10 is to my physio..
So as we all feel pain it could be difficukt for the panel to judge that you are exceptional.. I cannot tolerate any painkillers but morphine/butrans patches... so again I know these kill off my colon so I too have pain daily. The panel wouldnt necessarily be able to differentiate between your pain levels and mine so neither of us would be likely to get funding based around pain, despite it being troublesome for you and your diabetes...
Its not meant as criticism, as I too am faced with the same difficulties with the same trust/ccg.
If they have stopped exceptional funding that is a different matter. It would be interesting to read the NICE guidelines and CGM advice under exceptional funding details... and if they can stop it.