Afternoon all, Hope you're all as well as can be, sorry but you've all been so supportive I thought I'd write here again with my ongoing issues. If you have seen my previous post you will know the last month or so I've had sickness and migraine followed by a staph infection then finally mottled skin and sorry for tmi but blood in my stool.
The issue is during all of this I have had joint pain and pain in my hands which is what I last asked for advice on, I'm still now waiting on rheumatology to get back to me to see what they want to do going forward.
However the joint pain has gone so severe I can barely use my hands and now it's in my hips going down my thighs and up my back to the point where its affecting my sleep and walking. The gp couldn't prescribe steroids as she said that's up the the Rheumatology department to deal with but she has prescribed me with morphine which I have never had before. I am concerned in going on it but I'm in such pain I don't know what else to do. Does anyone have any advice please? Thanks 💕
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Haylz2109
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Hi Haylz I am so very sorry that you are suffering so badly.
My journey quickly progressed to mst having had bad reactions and intolerance to other pain meds. Initially I was on 15 mg twice daily plus 9 x 300 Gabapentin. My doctors had no imput in reducing them that was left to me. I reduced to 10 mg twice daily and two Gabapentin at night.
Then I saw a private pain management specialist who decided I must come off them and try drugs that were more effective. Long story short after a difficult time of withdrawal after ten years on mst I developed Seratonin syndrome from the new drugs and the GP quickly gave me not to reduce my heart rate and BP.
The pain specialist then put me on Tramacet on top of the 5 mg mst. I developed gut problems, bloating, nausea, pain, burping and struggled to bend over. I went to the GP who feels there are red flags and is doing cancer screening. I stopped the Tramacet but now I can no longer afford the private pain specialist and the NHS pain management team declined a referral. My GP will nit up my pain meds and the 5mg of mst isn’t touching me in a flare. I have had about 10 hours sleep all week, struggling to walk, sit or lie comfortably.
Sorry for a long winded response but although doctors actively discourage morphine I have been reasonably controlled on it for ten years and now I am in agony wishing I had never gone to the private pain specialist. I guess if you can tolerate other drugs then maybe morphine isn’t the best choice for you but if you cannot then you need something to ease your pain and make life tolerable and morphine in the right dose will help you.
Hi Cecily thank you it's been a hell of a few months, hope you are doing ok. Sorry to sound naive but what is mst ?
So sorry to hear about the private specialist reducing your medication and affecting you that way. Oh no serotonin syndrome is terrible I almost had that once after having a reaction to venaflaxine its horrible, Hope it didn't cause you too much pain.
I'm so sorry to hear that the pain specialist done all that to you especially with all the side effects you had from the different medication. Surprised they denied your referral given your circumstances as you've stated they should of definitely helped further.
Don't apologise for a long post all that information was very helpful. I'm glad to hear that the morphine has helped you in maintaining your pain so far.
I can manage other pain relief such as cocodamol and ibruprofen however the pain I'm in currently is so severe that its only taking the edge off for maybe 2 hours at best and I barely get a few hours sleep with it. My only other option was to go and wait in a and e in the hopes that they provide steroids however I do not wish to waste their time and the pain I am in I don't quite know if I would tolerate the wait time and things. I will attempt the morphine its only a low dose of 1.25mg but I think I will try to push and try it at night just to see if it eases it to sleep better and try to limit the amount I need. Hopefully it will get me through till the rheumatologist comes back to me, its just so upsetting to be dealing with all this and the pain I've never had this bad before. I did question my pain threshold due to this but having 2 children via c sections and other medical procedures with no pain relief makes me realise I can deal with majority of pain.
Thank you for your reply I really appreciate you always being here to support me 💕 xxx
Thank you for that, unfortunately My gp didn't mention that they could contact an on call rheumatologist. The problem is with my area there are only 5 available covering a vast area which is why it's so difficult to get hold of them. I am awaiting a decision back off the rheumatologist as to what she wants to do next after speaking with the Rheumatology helpline but how long that will take I'm unsure. I did go private before however they were no help unfortunately, I have been diagnosed with UCTD but they just can't determine which condition it is specifically just that there is an issue and I respond well to steroid treatment.
That is surprising with the a and e as I had to go to them a few months back and they prescribed me steroids straight away. However I try to avoid them as much as possible especially with the situation and wait times currently.
The system definitely is broken and its people like you and me that then end up on the receiving end meaning we have to suffer more long term than necessary.
Sorry to hear all you have been through and thank you for the information I will bring it up next time to my gp about the on call in case that is an option with mine too.
I e been on oral morphine for years, the trouble is addiction & tolerance. You can take it for 6 days in a row without developing an addiction, but you’ll need two days clear after. The drug is generally fine while you’re on it, it’s withdrawal that’s the kicker. I literally use it when I cannot stand the pain & need a break for that reason.
I was on oxycodone for a couple of years and detox from that was hellish, I won’t allow myself to be addicted again purely because I never want to go through that again.
Thank you for that information. That was my plan to be honest use it perhaps at night and only when required just to get some relief especially for the sleep aspect as it hurts too much to sleep in any way currently. Ah I understand so more the withdrawal and possible addiction that causes the problems. Fingers crossed now I won't need much of it and hopefully my rheumatologist will get back to me asap. Thank you.
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