[mandyphillips41Participant]

Hi everyone, I had my SCT in may after 2 bags of Melphalan, I was discharged from Hospital Mid June.
I am still waking up most night in terrible pain and if I do manage to get back to sleep (which is hardly ever) then when I do awake in the mornings I am finding it really hard to actually get out of the bed and downstairs due to the pain in my back, legs and the bones in my fingers.
I have had all sorts of consultations with various experts and no-one can seem to understand why or what.
Does anybody else experience this. I was told last week that I am now in remission – which I and my family are thrilled about but because of the pain I am having I am finding it hard to feel too happy and I find myself doubting my remission because of this.
Once I manage to get down the stairs and my body wakes up (this takes about 45 minutes), then I am fine but around 4pm I can feel the pain starting again and find that the only place I am comfortable is in bed so I am going to bed most days at about 6pm.
Is anybody else experiencing anything similar or the same. This is starting to depress me as I am still not able to get on with a normal life.

Many thanks

Mandy x x x

[mhnevillParticipant]

Hi Mandy,

Sorry you are having so much pain, even though you are in remission. This is one of the horrible things about MM.

Have you seen a Pain Specialist? I saw the Palliative Care Nurse ( sounds grin, but wasn't), this was very helpful as she worked with me till we found formula which worked.

Nothing worse than pain. Lots of love.

Mavis x

[mandyphillips41Participant]

Hi Mavis

Yes I have been seeing a specialist every 2 weeks, he has given me an injection of steroids and along with some anti imflammotories (spelt wrong – sorry) this did seem to work for a couple of weeks but the pain and the waking in the middle of the night is back. My husband is very patient but I feel he is at the end of his tether with my constant pain…. I just want it to go away 🙁
I was thinking that maybe if I started swimming or a light exercise class it may help, think I will try anything.. lol
Anyway, thank you Mavis for your reply, how long did you see the nurse for? it might be worth a try, I will contact my district nurse and see if they can arrange something.. (I keep forgetting about them)

Mandy xxx

[SarahJaneParticipant]

Doesn't sound like you are having much fun at the moment, one thing my consultant said was to try walking daily, walking is the best exercise for bones apparently (and perhaps for the mind). It took me a while to do any walking, even got an app on my phone to try and encourage me, even 15 minutes round the block. But now the weather is turning it's harder to get motivated – but I just try and remember what she said. Personally have avoided swimming pools as someone once said it was a bath of germs, and with a compromised immune system I didn't want to risk more illness.
Sarah Jane
xx

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