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Morning

Ibelive2020Ibelive2020 Member Posts: 803 Pioneering
Morning everyone 🙂

Replies

  • 66Mustang66Mustang Community Co-Production Group Posts: 4,665 Disability Gamechanger
    Good morning, how are you? :)
  • OxonladyOxonlady Member Posts: 381 Pioneering
    Hi @Ibelive2020, how are you feeling?

    I was in hospital for five days last week and I'm still not well and the pain is bad. Just spoke to my GP, he's going to contact the hospital but I doubt they'll do anything...
    Sorry, I don't mean to moan, I know you've got your own problems. It's just that I've had such a bad night. 

    Wishing you a good day. 
  • Ibelive2020Ibelive2020 Member Posts: 803 Pioneering
    @66Mustang and @Oxonlady im struggiling today with my anxiety etc it so hard hope you get well soon @Oxonlady im in pain 2 xx
  • janer1967janer1967 Member Posts: 9,210 Disability Gamechanger
    Good morning lovely people 

    Sorry you are both not doing well @Ibelive2020 and @Oxonlady hope the day gets better for you 
  • Ibelive2020Ibelive2020 Member Posts: 803 Pioneering
    @janer1967 im ők some days with my anxiety and pain then the next it feels like its cooking me today is a bad day im just worrying about everything im very teary tóo i have Been put on new painkillers which i have nőt had before they are called gabapentin im also on dihydocodiene some days im okon them some days they dönt work i have just Been diagnosed with a severe case of osterarthiritis dócs cant understand why i have this as im only 40 
  • Ibelive2020Ibelive2020 Member Posts: 803 Pioneering
    Choking me i mean 
  • janer1967janer1967 Member Posts: 9,210 Disability Gamechanger
    @Ibelive2020 it can take a while to get used to new medication 

    We all have good days and bad and don't be hard on yourself getting your head round a new diagnosis can be hard 

    Have a chill day a nice bubble bath relaxing music I know that's not easy with your kids around just get a duvet on the sofa 
  • chiariedschiarieds Community Co-Production Group Posts: 8,018 Disability Gamechanger
    Morning everyone. I know how you feel @Ibelive2020 - my GP believed I had osteoarthrosis, but not my rheumatologist. She reluctantly offered me a scan, & asked if I would come back & see her, I said I'd have the scan but didn't want to see her again as she didn't believe me. The scan showed most of my joints were affected. I was 40, but felt I'd had problems for several years already.
    @Oxonlady I'm sorry you're still in so much pain, & do hope your GP finds out more from the hospital, & remains supportive, You've suffered so much pain for so long, & it can certainly drag you down. Here's hoping you both feel better asap. Hugs to you both, xx
  • OxonladyOxonlady Member Posts: 381 Pioneering
    Hi @Ibelive2020, have you seen a rheumatologist? They can do more tests to confirm your diagnosis.
    I'm so sorry to hear that your anxiety is high today. 
    Have you ever been offered CBT? It teaches you how best to cope with anxiety and other problems.
    Meanwhile, as @janer1967 suggested, take it easy and rest.

    Thank you @janer1967, pain becomes a problem when it's severe and persistent and you don't know what's going to happen next. I'm trying to stay positive. I hope you are ok. 
  • OxonladyOxonlady Member Posts: 381 Pioneering
    Thank you @chiarieds. I've been told that part of my hip bone has died. I'm on strong pain killers and antibiotics but I'm still in pain. I don't know what needs to happen next, I really don't want surgery.

    I hope your pain is under control?

  • 66Mustang66Mustang Community Co-Production Group Posts: 4,665 Disability Gamechanger
    Sorry everyone to hear you are struggling. :(

    I really hope you feel better soon.
  • Ibelive2020Ibelive2020 Member Posts: 803 Pioneering
    @janer1967 my kids are at school apart from my oldest child hé goes back tomorrow it teacher inset day im just trying tóo keep busy gutted whole house lol 
  • Ibelive2020Ibelive2020 Member Posts: 803 Pioneering
    @chiarieds i have Been in pain for years i have had x rays at the hospitál which confirmed i have osterarthiritis im now waiting on a letter for MRI scan and @oxonlady which painkillers áré you on? I do hope you get well soon im also on ceblerex aslong with my other meds today it feels like im floating @66Mustang thank you xxx
  • chiariedschiarieds Community Co-Production Group Posts: 8,018 Disability Gamechanger
    Now I know why you're in so much pain @Oxonlady - I only ever came across one lady with this (I believe it's avascular necrosis/osteonecrosis)  & all I can remember was that she had severe pain. Have you been offered physio as it may help?
    I have a bit of a daily fight with my pain, the neuropathic pain being the worst, so I have burning pain the moment I'm upright, but refuse to lie down all day instead.
  • OxonladyOxonlady Member Posts: 381 Pioneering
    Hi @chiarieds, yes it is avascular necrosis and I have no idea what treatment there is, apart from joint replacement. My knee and shoulder are affected, as well as the hip.

    @Ibelive2020, I'm on high doses of Diclofenac and Nefopam. I'm allergic to morphine, Paracetamol, codeine and a lot of other meds. 
  • OxonladyOxonlady Member Posts: 381 Pioneering
    @chiarieds, I can't put any weight on my leg, I can barely stand, so physio isn't safe at the moment.
    I've also got neuropathic pain from my damaged spine... I'm still hoping for a miracle! 
  • Ibelive2020Ibelive2020 Member Posts: 803 Pioneering
    @oxonlady im on gabapentin dihydrocodeine alsó celecoxib lansoprazole and invité D3 plus paracetamol if and when needed so yep im like a walking chemist 
  • Ibelive2020Ibelive2020 Member Posts: 803 Pioneering
    Invita D3 i mean 
  • CressidaCressida Member Posts: 779 Pioneering
    @Oxonlady sorry to hear about your pain. I cannot begin to imagine what that is like. The fact that you have been an in-patient for 5 days says it all. Constant pain is so depressing, once you go right down it's hard to get back out of it. I have RA and OA which (touch wood) has been quite well controlled since I started dual-therapy but I know when the pain gets bad for several days in a row it feels like I have been in pain forever. This forum is a good way to put your own problems in perspective. Sorry to anyone who is suffering at the moment. 
  • OxonladyOxonlady Member Posts: 381 Pioneering
    Thank you, @Cressida. Unfortunately I'm going to end up in hospital again, I can barely move. My GP told me that he's going to contact the hospital because I'm barely functioning. I have other chronic conditions and everything has gone downhill. It's rather scary but I'm trying not to go to pieces. My faith keeps me going...

  • chiariedschiarieds Community Co-Production Group Posts: 8,018 Disability Gamechanger
    Oh @Oxonlady - I'm sorry to read this, but hope this will be looked into further if you do indeed go back into hospital......sometimes it's the best place to find some answers. As you suggest a total joint replacement is an option, but you might want to have a look through this site too, so that you can ask questions about any treatment. Please see: https://www.physio-pedia.com/Avascular_Necrosis
    If all else fails, perhaps a hip replacement may after all help in making you pain free (well apart from your neuropathic pain). I do appreciate your apprehension, because as well as having the hypermobile type of Ehlers-Danlos Syndrome (which resulted in the generalised osteoarthrosis I've mentioned) + neuropathic pain due to Chiari 1 Malformation, I managed to fracture my hip (the neck of the femur) over 4 years ago. I was very concerned, as I was told I may still end up needing a hip replacement. My friend had a hip replacement 6 months after I fractured my hip, & he fared better than me.....we compared notes!
    We're all here for you, & I will keep you in my prayers & thoughts.
  • OxonladyOxonlady Member Posts: 381 Pioneering
    Thank you @chiarieds. All prayers appreciated! 
  • lisathomas50lisathomas50 Member Posts: 3,874 Disability Gamechanger
    @Oxonlady sorry to hear your not well hope that you get help and support that you need to get better take care x
  • OxonladyOxonlady Member Posts: 381 Pioneering
    Thank you @lisathomas50

    I hope you and your Mum are ok. 
  • Ibelive2020Ibelive2020 Member Posts: 803 Pioneering
    @oxonlady i do hope that you get well soon thinking of you xxx
  • OxonladyOxonlady Member Posts: 381 Pioneering
    Hi @Ibelive2020, how are you this morning?
    Thank you for thinking of me.
    Last night wasn't as bad as the night before but really I need to see the specialist asap. My bones are making very peculiar noises every time I move!
    I'm hoping for sunshine today. So far it's very cold here in London. What's it like where you are?

  • Ibelive2020Ibelive2020 Member Posts: 803 Pioneering
    @oxonlady i was up few times through night só got up at 5am im still in pain now in my hands hip right shoulder and left hand and ankle going tó táke some meds now its nice and sunny here in county durham hope your ők and thát you feel well soon xxx
  • OxonladyOxonlady Member Posts: 381 Pioneering
    Hi @Ibelive2020, sorry to hear you are in pain, I hope the tablets help.
    It's very frustrating to be in pain all the time and not being able to do things. 
    I'm trying to stay positive but it's not always easy.
    Try to get some rest when you can. 
  • Cher_ScopeCher_Scope Posts: 3,391

    Scope community team

    Morning everyone and I'm sorry to hear so many of you are dealing with chronic pain  :( 

    Please let us know how you get on with hearing back from the hospital @Oxonlady We are all rooting for you.  And, I hope this Tuesday treats you well @Ibelive2020 - take it easy  <3
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  • Ibelive2020Ibelive2020 Member Posts: 803 Pioneering
    Thanks everyone xx
  • OxonladyOxonlady Member Posts: 381 Pioneering
    Hi @Cher_Scope, today has been a bit of a struggle as I am having some side effects from one of my new painkillers but I have to stick with it for now as I'm pretty much allergic to everything else!
    I'm hoping that each day will be better... somehow!
    I hope that you are well. 
    Wishing you a peaceful night. 
  • Cher_ScopeCher_Scope Posts: 3,391

    Scope community team

    edited April 14
    @Oxonlady Hello there, how was your night?  I really hope you got some rest and your pain eases.  I'm doing well thanks, loving the sunshine outside today.  It lifts the spirits doesn't it?
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