How I reinvented myself after PMR diagnosis

[Raven1955]

This is in response to PMRpro 's request to describe how we changed our lives after diagnosis.

I was originally diagnosed at age 61 with PMR in November 2016 after already dealing with it for about 6 months. I work at a wholesale supply house for excavating contractors, supplying pipe for sewer, water, irrigation, stormwater, etc, along with pumps, culvert, drainage tubing and pretty much anything that excavating contractors can install under ground or on the ground. Prior to diagnosis and starting on prednisone I still worked but was constantly at a high level of pain and exhaustion throughout the day at work, losing over 40 pounds of weight because of pain. Getting on prednisone (pred) was amazing but I quickly learned that didn't translate to going back to all the work and heavy lifting like I was previously was able to. Too much hard work and a flare up was guaranteed. Push too hard at working and exhaustion would put a halt to the rest of the day.

I've been blessed that I have been able to continue with my job but where I previously spent at least 75% of my time at physical labor I now spend 90 % of my time at the desk and on the phones. The 10% physical work is done at a greatly reduced speed, much more carefully and without heavy lifting anymore. Although I work at the same company, in truth my job has totally changed. One of the biggest side effects for me was muscle wasting. I was in very good shape for a man in his 60's. In the first year of PMR my muscle loss was unreal. I tried to maintain what I could but if I pushed too hard the PMR would start flaring up right away. I know I'm an exception in that I've kept working but it has come at a cost. I've kept working 40-50 hours per week but there's nothing left at the end of the day and weekends are spent totally resting and recovering so I'm able to be at work on Monday. Thankfully, now that I'm almost totally moved to doing office and phone work it's not nearly as severe and I can vary my work hours according to how much I can stand. Throughout the recent years I might work from 7:00 to noon but will take 3-4 hour "lunch break", Finishing the day with another hour of work. Then I take paperwork home with me of the sort that I can do from my recliner on a laptop.

Fall of 2023 finally allowed me to start cutting back my hours at work and I have certainly found my level of exhaustion to improve more and more. No surprise there! For me it has required a very extreme focus, paying attention to any pain levels, slow and cautious pred dose reduction schedule, avoiding stressful situations, and especially learning to become my own advocate/doctor. Keeping my pred dose high enough allowed me to continue working, along with measuring my work load versus what I could realistically accomplish without paying the price via flare ups.

I'm not sure how to do a link so hopefully PMRpro can make use of this in its present format. If not, I won't be insulted lol.

[DorsetLady PMRGCAuk volunteer]

That’s exactly what she wanted….

[PMRpro Ambassador in reply to DorsetLady]

It is ...