@jimhd , Jim. I think music is as much for soothing your soul as it is for your arthritis. you are correct, @phoenix0509 is David. Music takes you to a dimension that is less devoid of pain. Glad you were able to practice today. Best, David
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@jimhd , Jim: I am continually amazed how you forge ahead despite your difficulties. I am glad to hear that your wife is there to support , encourage and remind you of your role in the lives of others as you play the piano and lead the Sunday evening service. Your inner resolve is a testament to God working in your life and showing others that despite overwhelming challenges you persevere and seek to bring comfort to yourself and other like minded people with your faith and love of music. Keep the Diesel F250 ready for the more challenging trips. Be prepared as you travel on those snowy roads ,just as you are preparing yourself for the seemingly endless battles of self survival. Jim, you also serve as an inspiration to me and others on Mayo Connect. In deepest regards. David
@jimhd, Jim. I hear your troubles . Thank You for sharing about your challenges. Perhaps its time to stop driving on Sunday evening to avoid driving in the dark or ask someone to take you to church or perhaps an extra daytime service might be substituted. This week your goal is to seek out a new counselor. Having someone to help you along the path is just what you need. Start by asking your spiritual leader at church. Let me know your progress. David
You are welcome @swartzki , I have had a diagnosis of SFPN since about 2011. Taking care of yourself is a concern of course. I have the same concerns for myself. Its a fear I think we all share that someday we will not be able to do for ourselves. I prefer not to drive, so I ask family for rides. Other than that, I am OK for activities of daily living. I just do not walk much. I am fortunate that I have Grandchildren next door. I have lower expectations for the medical care I receive. Its there bar, not mine. Best to you, David
Hi @swartzki, I gave up work because of SFPN, my feet were so painful that it made simple walking a chore. I did work from home for over a year, that was much better. Luckily I was able to file for disability. I soon found that I filled my days with new activities, like studying the Bible. Grandchildren were and still are an important part of my life. I was fatigued, so I took naps. It took some time to even partially accept my SFPN condition and even today I still think there will be a turnaround someday. Its not unusual to feel abandoned by God.
In fact ,its probably normal. Your faith will wax and wane over time.Let the thoughts come and then let them go. Look for God working in your life despite how you feel. Hold on to your love of your grandchildren. You will know when its time to cut back at work and know that you might go kicking and screaming. We never know when our last day might be so give thanks for today. Your job is just to show up each day, for worrying never solved one thing. Wigs are in, so what color do you want to be today? Letting go of pride is so difficult, it still is for me. Ask yourself, what is the worst that might happen ? might our life expectancy be shortened or lengthened? will we all just be going home, back to God, "Return to Love" as Marianne Williamson has so wonderfully been quoted.
Keep the faith,lose the pride,stay the course and Pray for guidance and know that you are loved. David
Rachel; I watched the You Tube Video you suggested. Dr Ostrander's talk was very informative. She is a great speaker. Boston is about 3 hrs drive from me. Perhaps it will be in my future, or at least I can educate myself more to present information to my Neurologist to consider further testing and/or treatment for SFPN. I have become much more symptomatic in the last few months, increased pain/tingling in upper extremities during and following sleep, autonomic symptoms of blood pressure and lower extremity pain/paresthesias. Thank You for posting this video, its a must see for everyone with neuropathy, especially small fiber peripheral neuropathy and fibromyalgia as well. David
Tue, Jan 14 7:46pm · Polymyalgia Rheumatica (PMR): Meet others & Share Your Story in Polymyalgia Rheumatica (PMR)
Hello @johnbishop , an Update, interesting that I am now at day 13 of prednisone, 10mg/day x 10 days, then increased to 15mg/day for the last 3 days. I see only about a 40% decrease in symptoms. Its still early in the treatment of PMR. My symptoms are more bilateral arm pain/tingling and hip/leg bilateral tingling. arm pain > hip/leg pain. My MD elected a lower starting dose to help reduce the chance of a pseudoarthrosis at L5-S1 (TLIF November 2019). I am splitting my 15mg/day dose to 10mg/am and 5mg in pm. I am able to sleep longer at night (2 to 4 hrs) but still awake multiple times in pain. best David