[Bones]

The remission blues

by Bones on Tue Apr 29, 2014 1:19 am

Hey, great news. Remission after 3 years Revlimid and Zometa helping with Stage 1 multiple myeloma. Stem cells collected and now the news of remission.

But hold on ....

My aching bones keep me awake for days. I thought remission meant none!

My ribs are singing with soreness. Isn't it supposed to be gone?

I sleep for hours. Is this true to form for remission??

Can't even think about working again. What will they say when I mention remission?

Shooting pains in the legs and spine. Go away. I'm in remission, aren't I?

Please help me understand what it means. Is this the "floating in wasteland" that I have read about?

My heart leapt when I heard the R word, but, days later, I'm wondering if I heard right, or it was just my inner voice putting words in the specialist's mouth.

[Anonymous]

Re: The remission blues

by Anonymous on Tue Apr 29, 2014 9:37 pm

You've been in remission for three years, or you've been on Revlimid for three years? I'm not sure of your timeline.

I've in remission almost 4 years. At first I felt really weak and sick, even though I was said to be "in remission" (a few months after my stem cell transplant).

For the last few years, I've focused on building my health back up. I work out, I eat healthy, I walk everywhere I can. I also had to do some more intense work, such as one on one with a Pilates coach, to rebuild muscles in my core and back which were weak and leading to back and posture issuers. I lost the steroid weight and regained all the atrophied muscles.

So yes, I'm doing well, but I feel the medical side can only do so much and then you have to do some of the complementary stuff on your own to build your body back up. It takes time.

[dnalex]

Re: The remission blues

by dnalex on Wed Apr 30, 2014 5:39 pm

Hello,

I'm sorry that you are still feeling unwell.

I think this thread will be of interest to you
https://myelomabeacon.org/forum/remission-what-does-it-mean-t1554.html

There are different kinds of remissions, and it may be something to discuss with your doctor, as to approaches that may be used to ameliorate your pain.

Best wishes,
Alex