Any advice please

[rlupus]

I am in desperate need of answers instead of keep being told i am complex case!!! i have lupus and Antiphoslipids, and chronic asthma, Just on 17th april 2015 was admitted for a new port a cath this is now my 3rd one in 4years as they keep getting blocked, However since this has been in place i was discharged within the week only to end up back in hospital for another 2 weeks still with no answers on why i am in chronic pain from neck through to bottom of spine and shoulder , i also had a clot in right arm that thankfully has gone , but still no let up with all the pain. I had a MRI and this found nothing , I am sick of having to take MST , everyday just to get slight relief.

I am at cambridge on thursday hoping they will consider starting me on something else other than warfarin , but not holding much hope as they say my INR needs to be stable and t never is. I am allergic to clexaine.

Any advice please this is driving me mad.

sorry for the moan but i don't no what else to do i have been stuck in bed for most of 5 weeks now , not much of a life .

[tsouko]

Similar symptoms here but kind of milder. I am not an expert on this but i fully understand you. I can only wish you luck at cambridge and to have positive thoughts about the future - it can really help instead of stress, anxiety and negative thinking.

[rlupus in reply to tsouko]

Thanks for your reply i really hope i get some answers its so frustrating.

[Carcrashgal]

I'm sending you good thoughts, and really hoping Cambridge can provide some answers for you, but in the short term, MST is one of the gold standards of pain relief, so if you're still in pain, something's not working. You might well be on too low a dose - GPs are scared of MST so many of them don't prescribe it properly. When used correctly, it works brilliantly. Or perhaps there is another analgesic which would be more suitable for you. Don't just up the dose yourself, though: this is a painkiller which does need to be monitored. So when you see the medics on Thursday be sure to mention the n on-pain-relieving pan relief!

And wishing you the very best of luck getting through this!

[rlupus in reply to Carcrashgal]

Thank you so much for your kind words, i have a fantastic GP i see him today and he has increased my MST just don't want to become yo dependant on it, i am hoping for some answers Thursday will keep you updated on the outcome. In the mean time i am very sure i have a abces in my portacath as it was used again today and all the same symptoms , shivering can't get warm headache , and very painful around the port sight. have just got up been in bed since returning from GP this morning.

Once again thank you for your warm wishes.

[Carcrashgal]

Well, I'm not pleased to hear about the catheter problems, but am extremely glad to hear you have such a supportive and sensible GP. Don't worry about getting dependent on the MST for now, concentrate on getting to a stage where you don't need it. When you don't hurt so much, you'll cut down the medication, but right now, let it do the job so that's one less thing you have to worry about. best of luck for Thursday!