Really really bad night!

Hi just wondering..... does anyone have a night like this....... i woke up to so much pain in my lower back, right hip down to my right knee. It was agony lying still, i thought if i could just get up and try and move about it might help, but the pain was so bad i was in tears! bow i live on my own so it can be quite scary, i took 2 tramadol after 2 of the stronger co-codamol did nothing, but even that didn't help, i thought if i could call my friend next door and she could call the doctor or someone and the sodding phone fell and went under the bed so i was trapped with this pain until it eventually eased off at about 5 am !!! So what do you do when your trapped in pain like that??? And on top of that I'm still getting bad cramps from the uterine biopsy, so also would like to hear from any ladies out there who may have had a cancer that could have been connected to lupus? I apologise for keep asking questions but I'm on my own and don't want to keep pestering my friends, My 2 sons and daughter don't want to know anything about me being ill anymore, they are sick of it and think i shouldn't be taking any medication at all and that if i stopped taking it i would be fine, When i asked my daughter a few weeks ago if she would take me to hospital as my blood count had dropped to 6.4 so i had to go straight away her answer was that i was really inconsiderate and just demanded everyone did everything when it suited me, so i just went home, my GP had called the hospital to check i went later in the afternoon, discovered i hadn't and called an ambulance. so you see my dilemma, just not telling them about the Lupus or the Cancer Biopsy i would rather do it by myself, i just hope you don't mind me getting information from you

7 Replies

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  • Sheilam, I have not had any pain like that but do not have cancer just lupus. I also had a herniated disc in my neck so I had a cervical fusion and shoulder surgery. I also live alone my husband became unhappy after 36 years. I think my illness and surgeries became to much for him so l understand a little about your family. I would talk to your doctor about the incident with the pain and see what he says. He may want to do some more test or have you go to the hospital if it gets to bad.

    I wish it was as easy as some people think, that you can just get off your meds and it would all go away. My son thinks the whole Lupus thing is in my head but at 34 I think it is because he has a hard time accepting the truth. Maybe it is the same with your family.

    Hugs

    Tammy

  • Hi Sheilam,

    Sorry to hear of your agony.

    I have not had that strong a pain but every night I wake up acheing in exactly the same areas. Lower back, both hips and right leg down to the knee. Strange as I had right hip replacent surgery 2 years ago.

    It didn't bother me til 9 months ago. My surgeon checked it out and said it was fine on the replacement side.

    It would be interesting to hear of anyone elselse with Lupus with Lupus have similar problems.

    Hope you get better pain relief or even better, find the cause and cure.

    Shrop.

  • Hi Sheilam,

    A few years ago I started having gynae issues - terrible pain, excessive and constant bleeding - and my gynaecologist thought I might have uterine cancer. I had a whole load of tests - scans, blood tests, biopsy, etc - and it turned out I had something called adenomyosis. There's some debate about whether it's an autoimmune disorder (possibly some variations are and some aren't), but probably mine was related to the Lupus. I was terrified I had cancer, and consider myself so lucky I didn't. I ended up having a hysterectomy, as none of the other treatments we tried worked.

    Don't give up hope. Lupus is scary enough without the threat of cancer. Usually tests are done to rule things out rather than prove what things are.

    I'll be keeping my fingers crossed for you 🤞🏼🍀💐

  • I meant to add that I used to get terrible pain in my lower back, hip and thigh, right down to my knee. It was thought to be because the adenomyosis caused inflammation to spread to the sacroiliac joint/nerve. Sometimes the pain would be so bad I could barely move and absolutely nothing would get rid of it - no usual pain killers - although warmth could help sometimes, but not always. I can remember being all curled up in a ball, crying from the pain on more than one occasion.

    After I had my hysterectomy, that pain definitely eased off. I still get a hint of it if I'm having a flare, but nowhere near as bad as before. I suspect that my sacroiliac joint/nerve is now super sensitive to inflammation from Lupus and I'm stuck with it now, but it's manageable!

  • Only last night I had pain like that. I have had it in and off since I was a child. I have SLE. The pain in my lower back is horrendous. My hips are so painful that even my memory foam mattress feels like tarmac. I have an ache in my knees that I can't describe. Sorry you have it too. Sleep is the only relief I get.

  • I have had that same thing. The pain brings me to tears and can't move. Its So horrible. Mine hasn't lasted more than maybe 10 mins at a time. Yours sounds horrendous.

  • Hi Sheilam52,

    I am sorry to hear you have been feeling poorly. Have you spoken to your doctor about your joint/muscle pain?

    It is advised to speak to your doctor or rheumatologist as this will enable him/her to provide you with the correct pain management treatment such as oral, topical or a referral to a physiotherapist. In order to prevent future occurrences like the one you recently experienced, you may wish you discuss a care plan with your doctor. The NHS choices website discusses the importance of having a care plan which you can read here: nhs.uk/Conditions/social-ca...

    We published a factsheet that contains services and support helplines which may be of interest to you: lupusuk.org.uk/wp-content/u... We can also provide you with LUPUS UK contacts who you can speak to over the telephone. These contacts are volunteers who most likely have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a local contact to speak to, you can email me at chanpreet@lupusuk.org.uk

    Wishing you all the best, let us know how you get on.

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