[suzettefoxParticipant]

Hi my name is Suzette fox, I was diagnosed  last May.  I had my SCT in November 2014 . I am in remission but I am still in constant pain.  I have curviture of the spine at T6.7.8 and  I have had  kyphoplasty.  Does anyone else still have pain. I am on fentanyl  x3 patches every three days

regards

suzette

[jaquicopleyParticipant]

Hi Suzette  Good to meet you.   I too am in constant around my back and ribs so I’m sending good wishes to you for it to get better soon.  I was diagnosed July last year and put on CDT immediately.  I had radiotherapy to C5 in August, vertebroplasty to C5 in September and Autologous SCT in January 2015 and have been in remission since late May this year.  I had 2 other fractures in my thoracic spine which I’m told have now started to heal so they cannot give me another vertebroplasty and have a fracture in my lumbar spine but have no pain from this.  I have a curve in my spine which makes me seem overly round shouldered.  I am on Fentanyl 37mg patches every 3 days (cut down from 50mg 3 months ago) and 150mg of Pregablyn each day.  I also take the maximum amount of paracetamol daily.  On the first day of new patch day (I put them on in the evenings) I feel alert and can live life much like I did before diagnosis, on the second day I feel similar (unless I overdo it) and on the third day I am absolutely exhausted to the point of not being able to speak (I sound drunk!).  Do you take any other pain medication and do you notice a difference in the way you feel on the third day of your patches?   I’m extremely glad to be alive and am so grateful for the amazing treatment I have received to get the Myeloma under control, but find it difficult to come to terms with the fact that I will always be in pain – I am 57.   I see Dr Vora, Pain Consultant, at Weston Park in Sheffield every 3 to 6 weeks who seems to be puzzled by the way I feel on the third day of my patch.  Do you notice such a pronounced difference and are you on any other pain meds?

[suzettefoxParticipant]

Thank you for getting back to me.  It is reassuring to hear from you that I am not alone in this pain thing.  I am seeing the pain team again in a couple of weeks and will mention the pregablin. I have heard of other people taking this.  My curvature in my back is made worse by my breast bone (sternum) collapse because of the myeloma. It is a strange disease how we are all affected in different ways.  Are you active, can you walk far, I get so depressed as soon as I spend too long on my feet, weight bearing, I get the pain, making walking so stressful. I am advised to walk to strengthen my bones but finding this too painful.  I am not a weighty person either !! I have only been on 36 fentanyl for 2 cycles raised from 24.  I have noticed that I am incredibly tired and fall asleep if not stimulated.  Feel sick at times.  I think I sound drunk on the first day, although my friends say that I don’t .  I have been told to take paracetamol like you, yes it does help a little but does not take it away. Also I can take sevredol 10mg if I need extra but I don’t take it very often as I don’t like feeling drugged up.

I had my treatment at the Marsden Sutton and East Surrey hospital, everyone has been so nice, I have only been going to the pain clinic for a couple of months.  I didn’t get referred before.  So I am hoping that eventually he can help. I am seeing Dr Farquare smith at the marsden.

Like you am so grateful that my myeloma is in remission, just want some relief of the pain, only out of pain when laying down !!!

I wish you well, let me know how you get on. I am also 57. !!!!

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