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Feeling defeated
I guess I'm posting in an effort to reach out seeking some hope and optimism, because PMR is really getting me down. I'm only two months post diagnosis, (although I've had unexplained pain for a couple of years). I was started on 65mg of prednisone, which obliterated the pain, but I believe gave me a false sense of security. I have now tapered down to 20, which is not controlling the pain and I find myself pretty much debilitated. I am waiting for a referral appointment with a rheumatologist, and hope I can find some answers. I NEED to get better! Please forgive me for sounding like I'm complaining, but I absolutely need my mobility back. I also need a place to vent to those who are not directly involved in m life. My husband and I are caregivers for our grandson, who has autism. I am grieving for my father, who recently passed, and am responsible for his estate. I am also responsible for and have enduring power of attorney for my brother in law who has dementia. I have retained so much weight from the prednisone, I feel like a walking waterbed.
Add to that, some serious concerns about my husband's health, little things like breaking the glass on my stove top, my puppy chewing my glasses, and a flat tire are nothing. I also hold an elected office, with the election coming up this fall, I need to assess whether I will be able to fulfill my responsibilities should I be the successful candidate. So much on my shoulders, no wonder they hurt. Thanks for listening. I'd love to hear your success stories, and that there's life after PMR. I truly am feeling defeated, and need some hope right about now.
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I am convinced of these vert same answers
reduce stress healthy diet and exercise will be the best answer not ever easy.
Feeling defeated, it is truly frustrating when ur diagnosed with PMR. I woke up one morning with severe pain in my muscles and joints, after several tests nothing was found out of the ordinary until an inflammation test was performed. I started with a 40mg dose of prednisone about 18 months ago, I am currently alternating between 5 and 4 MG every other day. My goal is to completely get off prednisone. This is what has worked for me. I completely changed my diet. I eat as many organic fresh fruits and vegetables a day as I can. I eat only organic chicken and fish. No red meat. I drink at least half a gallon of water a day. I started exercising daily and started practicing tai chi. I have noticed that stress management is critical. I have had a few flare ups here and there but I am committed. Sleep at least 8 hrs a day and you will feel the difference. Good luck on your journey out of PMR.
One of the hardest things for me was going from an active healthy person to a “sick person” (for want of a better term), almost overnight. But I have learned it is crucial to find activities, both physical and social, that you CAN still do. I have had to modify all my interests and obligations, pay much more attention to “self-care”, and seek out support wherever I can find it. There IS light at the end of the tunnel. After one year, I am finally tapering successfully, and feel well enough to plan a week-long vacation. It’s not the six week road trip we usually take in winter, but that’s ok. Just give yourself permission to let go of obligations that are just not realistic anymore, and take it day by day.
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2 Reactions@ropnrose woo hoo ! I'm curious if you could share how that conversation went with your Rheumatologist ( also- why not on Kevzara?) A relapse after 6 months sounds like the type of candidate for a biological . And @nothatkaren Remember - you are on steroids - so you may not yourself among your staff , etc !! Don't text them at 5 am _ HA HA - ask me how I know not to do that : )
"It’s not the six week road trip we usually take in winter, but that’s ok."
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Give it time ... maybe the 6 week vacation will happen again. After 13 years of PMR, I'm doing a 6 week vacation right now. At one stage, assisted living was going to be my next destination.
Next winter, I plan to check Australia off my bucket list. The 3 week TransPacific cruise should be okay but I'm dreading the 24 hour flight to get back home.
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1 ReactionI want you to know that your feelings are real, and the responsibilities you have taken on would be burdensome for a totally healthy person. First, I would suggest you find a Rheumy in your hometown to see and treat your PMR. They will also eliminate other autoimmune problems that have PMR like symptoms. There is a nationwide shortage of Rheumatologists so it might be months before you can get in. You might want to see an Endochronoligist because steroids are hormones and you can have the endo be proactive keeping an eye out for problems in their wheelhouse as a result of the steroids. I would also suggest you talk with your treating doctor about your current problems at your dosage. I see a Psychologist as a result of my PMR. I was eating organic for about 20 years, so I was already off processed foods and no salt. I have since given up refined sugar and most carbs. I have not given up meats, however I eat fish about 3-4 times a week. I have a cadre of doctors as a result of my PMR. I see a cardiologist, a specialist on my heart rates, a pain medicine doctor for my chronic hip bursitis, a pain medicine specialist for my spinal stenosis, a shoulder doctor who gives me private pay shoulder injections, a specialty dentist who treats my inflammation in the hard palate of my mouth, my endo whom I see quarterly (previously annually), a Rheumy, a Pulmonologist, a GI doctor, a Hematologist and an Infectious Disease doctor. I see them anywhere from annually to semi-annually, to quarterly to as needed. PMR has turned my life upside down and inside out. I had an adverse reaction to a vaccination in 2019 and have been on this roller coaster ride ever since. I would not be able to work as well as take care of my other needs. The worst is behind me, but I still struggle. I wish you well on your journey and please keep us updated on your progress.
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1 Reactionreplying to - "I'm dreading the 24 hour flight to get back home"
Not sure where your home is - just wondering if you have considered stopping off in Hawaii on the way home. Honolulu is about halfway between Dallas and Sydney. Have a few days of layover to help transition. I have learned to cruise one way and fly the other way on my vacations. I also do not over schedule my day's activities like I once did. Not sure I would seriously consider a 24 hour flight, even if I did not have PMR. I flew from Dallas to China non-stop, that was like 15 hours in first class and never again. I don't care how many meals and wine they serve you. I'm simply too old to want to do that again.
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1 Reaction@nyxgirl--A couple of months ago, when my rheumy and I had a conversation about biologics and methatrexate, she suggested Kevzara. I'm on Medicare and my Part D would not cover it with out me jumping through a bunch of hoops. If they did approve, I would have high co-pays. I wasn't crazy about biologics due to the side effects (pick your poison), so we dropped the conversation, because I was managing my PMR pain. Fast forward to December, I had a flare up. Along with the flare up, my headaches were similar to the ones I had when I had suspected GCA during the summer. I contacted her and told her that I wanted to try Actemra, which is approved for GCA and also used for PMR. She was on board and all I had to do was find a local infusion center and she submitted the order. With Actemra, I can go to an infusion center and my Medicare plans will pay for the infusions, after I meet my annual deductible. Actemra can also be prescribed for self administered injections at home. Doing that, I would have been in the same situation with my prescription plan and co-pays.
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1 ReactionI happy to see that you are making plans to take a vacation. I can relate to what your saying. I went from going 110 mph to 20 mph. Once I was diagnosed and learned about this disease, I accepted my situation. I think my friends and family took it harder than I did, because they know how active I was (hiked up mountains, hauled an elk out of the woods on my back, kayaked, camped, traveled, etc.) I'll do whatever it takes to get better. I am currently making plans to go to Iceland in October 2025. I'm am remaining positive and confident that the Actemra infusions will help me. If they don't, I'll have good travel insurance, if I have to cancel my trip.
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3 Reactions"- just wondering if you have considered stopping off in Hawaii on the way home. Honolulu is about halfway between Dallas and Sydney."
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We are approximately 800 miles north and slightly east of Dallas. We were going to layover in LA for a day or two when we return home from Australia. Honolulu is a better idea and it would be approximately halfway for us too.
We actually have a decent flight to Hawaii which is where we begin our cruise to Sidney, Australia. I never thought about stopping in Honolulu on our return home from Australia.
Thank-you for the suggestion!