Double trouble

[Peter55]

I had been on no pain meds for a week and a half on Friday night coz came off them so we could find out if new DMARD was working yet. Found out Friday night that it obviously isn't lol!!!

Had a huge flare that was so painful it affected my breathing. So I called 111 to get an OOH doc to come out and give me some morphine as I had no spare anywhere. Lady on 111 says your breathing's bad I'm sending an ambulance, so off to A&E.The ambulance guys were brilliant gave me gas and air to stop the pain. A&E quite different Laid in a cubicle for 3 hours in agony before a doc came in asking how I was. I said same as when I came in. He said what about the 5 mg IV morphine I gave you. I said what morphine? Apparently the nurse who was supposed to give it to me got distracted and forgot. For that I have no problem because they're bloody busy and things are bound to get forgotten. I was checked over sent home by taxi and told to see the OOH doctor Saturday morning. What an a**hole

He shouted at me for not keeping spare medication at home. Then wouldn't prescribe me anything at all. Just gave me a letter referring me to the A&E registrar. Well after a lot of waiting I got to see a very nice doctor Sophie papodopolous. She said she was going to complain about the OOH GP

Dr sloping shoulders who basically did nothing but refer anything above a cold to A&E. (I would have loved to have given him a slap rude arrogant b*^%^*d) but then came the double trouble. I found out I'm not fighting 1 illness but 2. My aching and tiredness and lack of energy or anything muscular and joint-wise were to do with the auto immune disorder. The real bad pains on my hands and feet were peripheral neuropathy. Probably caused by years on steroids. So I was given gabapentil for the neuropathy and sent home about 5 on saturday evening with gabapentil but no morphine of any sort. And morphine is unfortunately the only thing that stops the pain and I've got to wait all of Sunday with so much pain I was going to spend the day in bed but no, I'm not going to keep on letting it win. Even if it is only watching music DVDs at least it's what I WANT TO DO not what the illness lets me. Seeing an old school friend on Tuesday and she's taking me horse riding so the bloody ache better have gone by then. I'll try and get some pics to put on here.

[Peter55]

The A&E dr did say at first that she was going to give me oramorph to take home. But the hospital pharmacy was closed except for emergencies and she would have had to call in the OOH pharmacist which would have caused her problem coz I wasn't what would be included as an emergency.

So she could get the gabapentil herself, but controlled drugs she would have had to call the emergency pharmacist in and got an earful for her troubles. Amazing that. I used to do a 7x24 1in3week rota when I worked as an IT specialist for HP. If I got called, I went. No "can't it wait till tomorrow?" Coz there was money involved. Big banking systems. ATM controller systems.

Where it's people it's "oh he can be in severe pain until Monday. The gabapentil has quietened down the really bad pain. It's just this terrible aching. I can hardly move. Feels like I've run 5 marathons in 5 days. Once I'm up and walking I'm ok. But my hands and arms are just awful. Going to be fun cooking my dinner!!

[Peter55]

you're right she did mention FP10 but then didn't do it. I think they were just so busy she was running around like the proverbial blue a***d fly

If I had waited for her to do that for me I would have probably been about another 3 hours at the hospital. It took 7 hours to get seen and get the gabapentil so waiting for another 3 hours wasn't appealing. I'm better today and can move around, yesterday that was very difficult. I've got a docs appt at 10.10 tomorrow so I'll get it then. It just seems a bit pointless having an ooh GP scheme if they can't do anything.

[Peter55]

Yeah looks that way.

That's always the case. Once I was cycling home with my prescription in a sainsburys bag. I looked down and noticed that the bag had got caught and torn. I went back and found my prescription crushed and all over the road. I went back to the docs and explained what had happened and I was treated like I had sold them and come back for more. Questioned, suspected, I asked them to wait a minute. Rode back up the road to where the stuff was picked up a load of crushed drugs with my name on and went back to the surgery with them and just slapped them on the counter. "Believe me now?" I saiid and they all rather sheepishly apologised but you're right, it's the abusers that give the rest of us a bad image.

[Peter55 in reply to Peter55]

Oh and yes I'm going to ask for oramorph and ask for a spare bottle to leave with my mother and father in law as a spare. Otherwise I'll get lazy and not get a replacement when the first one is empty!!!

Yesterday was the first time I had tried oramorph. I found it suited me better than the modified release tablets. A 5 ml spoonful stopped the pain within 5 mins instead of half an hour and then kept it away for about 4-5 hours. With that I could cut my morphine dose from 120 mg a day to about 20-25 mg a day. And it didn't make me feel off my head and tired out.

[Peter55]

It's still a lot less

And I'm on a new DMARD so hoping if that works it's magic on me like it did last time. I'd had UC for 10 years and was booked in for ileostomy and they tried me on azathioprine, and I never had another flare after reaching 6 months on those. So hoping for same result. Colitis was horrible but this is worse. So if the new DMARD works then I'll be off morphine. I've got my father in law coming with me tomorrow to docs so we can prove it's not 2 bottles for me. It will work less and less unless it's used very sparingly coz it's an opiate and you develop tolerance very quickly. I get flares about once a month for two to three weeks so it's about a 5-2 bad/good day ratio so I do get a break where I can leave oramorph alone for a week or two and start losing my tolerance so it'll work again.

[TheAuthor]

I am so genuinely sorry to read that and I want to sincerely wish you all the best of luck.

All my hopes and dreams for you

Ken

[Peter55]

My pain comes and goes.

One week I will be completely almost bedridden without morphine and the next not need any. Problem is with taking a dose daily is I never know when I don't need it if you see what I mean. Also morphine makes me lethargic, short term memory awful and not interested in anything. So id rather take it as and when necessary than constantly my bad/good day ratio works out about 5 bad to 2 good which is horrible. But I'd like to enjoy the days when I'm not Ill and medicate only on days when I need it. If it becomes full time then I agree we tag your prognosis. But as I'm not yet I'm going to give this a try