As more days pass with taking 2.5mg of Prednisone, after 9 months of taking 10-15mg, the worse my leg muscles are feeling. This is my reminder for why I took Prednisone is the first place -
I have a myopathy or myelopathy of unknown origin. Prednisone seemed to be the only thing that helped. It gave me the ability to walk. The ability to lift my arms. And, therefore, the ability to work (and keep) a FT job. Why?? Because it reduces pain from muscle tightness.
Now, I’m back to being crunched up in pain. I thought my docs and I had a solid pain management pain. But then, I screwed up. I’m not
sure what happened. But, I know I now wish I would have said, Yes – let’s go a dose higher. Because I am suffering in pain and that’s
what my Doc says he doesn’t want me to do – suffer. It’s just so hard to wrap my head around that pain pills and patches are the answer until the cause of my myopathy is uncovered. While I’m not only suffering in physical pain today, I am also suffering emotionally. I feel worthless. I have held my family back from enjoying the Thanksgiving weekend. I am fatigued and in crushing pain that negatively impacts my ability to walk around a crowded house or walk upstairs to use the restroom.
I have one more day off from work and do not see how I can improve enough to walk around the office and think through the fatigue. In the past, these would be the times when I’d up the Prednisone, at least temporarily. That’s not an option I am giving myself. What will happen come Monday?
I have been reading Medical Mojave‘s blog including the post Self Care for Steroid Withdrawal or Adrenal Suppression There is some great information in the post and related ones. I’m not sure how applicable some of the suggestions are for me because I do not have an adrenal problem. However, the post really clicked with me. No wonder I am using my albuterol inhaler more. No wonder my skin and scalp are so dry. Prednisone was wonderful for keeping my asthma and psoriasis/eczema in check.
A message to doctors, other medical professionals, relatives, co-workers, loved ones, neighbors, friends, and people who are frustrated by us:
What do people with chronic pain really want?
We want to feel in control. We want to feel strong. definitely strong. In our bodies and our minds.
Do you agree? What do you think people with chronic pain (illness, disability, etc.) really want?
Many thanks for reading.
Wishing you the best,
-Q
Filed under: Uncategorized | Tagged: chronic pain, doctor patient relationship, Prednisone | 4 Comments »






