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Therese, I'm so sorry you are going through this. I think all of us understand the despair you feel. I have lived with debilitating pain for decades with "Fibromyalgia" or "Chronic Pain Syndrome" as floating diagnoses. It took until last January to diagnose PMR which I believe came on 10 years ago. Now they have changed it to Seronegative RA and Carpal Tunnel. Who knows what they will throw at me or change it to when I actually get to see the Rheumatologist at the end of March.
Everyday pain, watching your life go by without you, and knowing we shouldn't feel 80 years old at our age (I'm 68) wears on us. I know my brain says "Yes I can" but my body quickly reminds me "No you can't." It is frustrating and demoralizing. I'm a rock cutter/polisher and a silversmith but haven't been able to engage since November. It has thrown me into a deep depression.
So, how do we get out of this. ? I have hung a bird feeder on my bedroom window so I can see the beautiful birds come feed. I stopped watching the news because that depresses me even more. I started using 3:1 CBD cream and oils (external only) which seems to help some (talk with doctor before using please). I use breathing exercises and (this will sound silly) I talk to my pain. I ask it what it needs, identify what color it is and follow it along the nerves to my brain. I try to practice not trying to get everything done on days I feel a little better. I need to recognize when I've done enough so I don't throw myself into a flare. I've also taken up Neurographic art therapy. It's interesting. My first "drawing" (and I can't draw a stick figure!) I couldn't make sense of, but then realized it was a person with disconnected arms, legs and head. It was me! I am completely discombobulated. Like me in a pain panic. It was enlightening.
I am grasping for anything to take my mind off the pain. I volunteer 2 hours once a week so I am thinking about others and get out of my head. I'm also doing CBT for pain management with my online therapist.
I truly hope you find some relief. It's so hard to live with pain instead of IN pain, but sometimes we just need to separate the brain from the body and take a different point of view. I hope one or two of my personal strategies will help you in some small way.
With love and understanding,
Terri
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@rocksology I too am 68 years old and was diagnosed with PMR in February 2025. I also have spinal stenosis which I thought was the main problem. Although prednisone and Actemra have been working extremely well for my PMR issues, the spinal stenosis/lumbar arthritis was causing crushing pain, probably exacerbated by the PMR. before I was able to see a rheumatologist, a general practitioner who wasn’t looking for PMR put me on Cymbalta for nerve pain. I started at 30 mg which wasn’t much of a help, but it was a low enough dose to help my brain get used to having the Cymbalta. After a few months, I went up to 60 mg which helped the nerve and muscular skeletal pain dramatically. during the past month and a half. I decided to start taping off of Cymbalta and I have to say that the nerve pain from the spinal stenosis is back but my PMR symptoms seem to be under control and make the spinal stenosis symptoms. Much more tolerable. Please talk with your doctor about starting on 30 mg of Cymbalta for a few weeks, which again, really didn’t help with the pain at all, but after a few weeks of being on 60 mg I found a huge relief. being that I am not a doctor myself I just went along with what the regular general practitioner was having me do last year. If you are on prednisone right now that should be helping if you are on a high enough dose, but I really feel that the prednisone with the Cymbalta truly kept me from going crazy. The pain was so excruciating. I too felt like I was at least 85 years old. My mother lived to be 94 and I would say to my family members that I feel older than my own mother, and this was at the age of 67. Good luck!