It's all so confusing !!

Hi all it's been a while since I've been on. Not long out off hosp again was rushed in this time. Collapsed and was suffering alot of pain, eyes was very heavy and couldn't get them open. Ambulance men found it very hard to get me out of my home as I was screaming with pain. The pain is all over my body esp at night when am sleeping if I stretch in my sleep am screaming out off me with pain. My lupus rash still appears 2 b on my face and the day I was taken to hosp it had came up my face but once I got on fluids for the night it seemed to have calmed down. Thankfully my kidney function hasn't changed much and the protein is slowly coming down but still a good bit off blood I leaking from them. Am on a lot off meds at the minute - steroids X3, fluoxetine, Hydroxychloroquine , irbesartan, mycophenolate mofetil and omeprazole. The docs now are planning on sitting down to have a meeting to see where to go from here. Everyday tasks ie a shower is getting so much like hard work. I just feel generally unwell a lot. Wish I had some kind off answers. Won't give me high pain killers as wanting to get my kidneys settled. Anyone no what I could do to try ease this? All I want is a full nights sleep and a good day. People say go a walk but when am in that much pain it kills me. Ever just need to get all this off your chest. Don't think I totally understand all this lupus and fibro stuff or why it's affecting my kidneys so much. Answers is just something that doesn't seem easy no more. Thanks to anyone who took time 2 read this.

Ruth :)

3 Replies

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  • Hi Ruth, although I 'took the time', to read your post, I don't have any answers. Sounds absolutely awful and clearly your current meds are not working. I wondered if amytripline could be of some help. It is a pain reliever but also a muscle relaxant. I can remember years back, being in the amount of pain you describe. All the usual codeine remedies were not doing a thing. It was as if my whole body had gone into spasm. When I was prescribed amytripline, it made a big difference. I still take it now to ensure a restful night. As for your kidney involvement, it is a common problem with lupus, but I don't know why. I hope your Drs hurry up with their plans for your treatment, and that you find some relief soon. Sorry not to be of more help, just wanted to let you know you are not alone.

  • Yes I want to say the same in expressing sympathy - also to agree that Amitriptyline is my favourite drug and currently the only one I take because of drug intolerance issues. I really hope your kidneys settle down very soon and you get a break from this awful pain.

  • Thanks for the reply. Here's hoping my docs get on the ball sooner rather than later. Will defs mention that drug 2 them 2 see how they feel about me trying it.

    Ruth :)

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