Body aches everywhere
in Health ·
Honey,
I’ve been diagnosed with polymyalgia/fibromyalgia, so if you can "relate" at all, maybe my experience will be helpful to you:
It all started just over three months ago—right after I got back from my beach vacation—with this deep aching in my pelvis, hips, and thighs... And my arms and neck? It felt like someone was literally trying to yank my arms right out of their sockets. When I finally saw my doctor, I just told her, "Everything hurts except my head and my feet." She put me on Advil for 20 days, and when that didn't touch it, she switched me to Ketorolac for another 20. After that, I was on Doreta, but that honestly just made me feel groggy, and the pain was getting so bad that I was sleeping in half-hour increments in the exact same position. My mobility tanked—I actually had to use one hand to move my other arm! Turning over in bed, even just getting up to use the bathroom, became a massive ordeal. My hands cramped up so badly, and my fingers, palms, and knuckles were so sensitive that I couldn't even lift a glass to my mouth... Honestly, when you're in so much pain that you barely sleep for three months straight, you start feeling a little crazy!
My lack of mobility was starting to look a lot like a stroke, just way more painful. I realized I had to somehow get a diagnosis because just treating the symptoms wasn't doing anything. I ended up seeing a specialist privately—a rheumatologist/internist/immunologist/allergist combo. She suspected rheumatoid arthritis, polymyalgia, fibromyalgia, and something else fourth. She ordered 17 different tests—everything from lab work (microbiology, biochemistry at the local hospital, nuclear medicine) to a Mayo Clinic scan of my hands, hip X-rays, bone density tests, and even a gynecological swab. She mentioned that given the long wait times, I should try to get everything done ASAP and check back within three weeks—like, "No waiting around—we need at least some kind of image first, then you can finish the rest later..."
You guys, even in that state, I managed to book almost everything online and get it done in two weeks! I only paid out of pocket for the Mayo Clinic hand scan since it was the key to everything. Even my rheumatologist was surprised—she was able to give me a diagnosis immediately: polymyalgia/fibromyalgia, and she started my treatment. It was down to the wire! I couldn't drive anymore and could barely walk.
The treatment plan is, unfortunately, corticosteroids—Medrol 32 mg, tapering down by 4 mg every week... I'm currently at 8 mg, going to 4 mg next week, and we'll see what happens after my follow-up... I take Nexium to "coat my stomach" and help with side effects one hour before the Medrol, then breakfast, then the Medrol. I also take Hydrochlorothiazide twice a week to help with fluid retention. It is super important to cut back on salt and purines (you have to ditch organ meats, bluefish, processed meats, and even certain legumes), eat veggies with light meat—mostly boiled stuff—and have snacks like fresh fruit, cottage cheese, or yogurt. I also make sure to get plenty of potassium (I drink homemade tomato juice) and magnesium (the fizzy tablets). On top of all that, I do moderate exercise and swimming.
What can I say?! The bottom line: the pain stopped in less than two days. Thank God for Medrol—bless whoever invented it! Whatever side effects or potential consequences there might be, they couldn't possibly be worse than what I was already going through! And bless my rheumatologist too; she told me, "I could have given you the steroids right away, but I can't do that without a formal diagnosis..."
When my physical therapist looked over my results one day, he actually let out a little "Whoa!" and said, "Man, what a summer! You're lucky you only have four limbs...!!!"
Just be really careful with corticosteroids. Follow the instructions exactly—don't skip doses or go over the prescribed amount (I even made myself a little chart with dates!), and whatever you do, don't stop taking them abruptly (like if you're worried about side effects)—that is the most dangerous part!
I hope my story helps someone out, and I'm wishing you all the best with your treatments. In our healthcare system, you really need all the luck you can get. Sometimes it feels like you can only navigate this if you're healthy, in great physical shape (it took me over 20 minutes just to climb the stairs to the clinic!), and mentally strong—plus being educated, resourceful, and having at least a little bit of extra cash to spare.
I’ve been diagnosed with polymyalgia/fibromyalgia, so if you can "relate" at all, maybe my experience will be helpful to you:
It all started just over three months ago—right after I got back from my beach vacation—with this deep aching in my pelvis, hips, and thighs... And my arms and neck? It felt like someone was literally trying to yank my arms right out of their sockets. When I finally saw my doctor, I just told her, "Everything hurts except my head and my feet." She put me on Advil for 20 days, and when that didn't touch it, she switched me to Ketorolac for another 20. After that, I was on Doreta, but that honestly just made me feel groggy, and the pain was getting so bad that I was sleeping in half-hour increments in the exact same position. My mobility tanked—I actually had to use one hand to move my other arm! Turning over in bed, even just getting up to use the bathroom, became a massive ordeal. My hands cramped up so badly, and my fingers, palms, and knuckles were so sensitive that I couldn't even lift a glass to my mouth... Honestly, when you're in so much pain that you barely sleep for three months straight, you start feeling a little crazy!
My lack of mobility was starting to look a lot like a stroke, just way more painful. I realized I had to somehow get a diagnosis because just treating the symptoms wasn't doing anything. I ended up seeing a specialist privately—a rheumatologist/internist/immunologist/allergist combo. She suspected rheumatoid arthritis, polymyalgia, fibromyalgia, and something else fourth. She ordered 17 different tests—everything from lab work (microbiology, biochemistry at the local hospital, nuclear medicine) to a Mayo Clinic scan of my hands, hip X-rays, bone density tests, and even a gynecological swab. She mentioned that given the long wait times, I should try to get everything done ASAP and check back within three weeks—like, "No waiting around—we need at least some kind of image first, then you can finish the rest later..."
You guys, even in that state, I managed to book almost everything online and get it done in two weeks! I only paid out of pocket for the Mayo Clinic hand scan since it was the key to everything. Even my rheumatologist was surprised—she was able to give me a diagnosis immediately: polymyalgia/fibromyalgia, and she started my treatment. It was down to the wire! I couldn't drive anymore and could barely walk.
The treatment plan is, unfortunately, corticosteroids—Medrol 32 mg, tapering down by 4 mg every week... I'm currently at 8 mg, going to 4 mg next week, and we'll see what happens after my follow-up... I take Nexium to "coat my stomach" and help with side effects one hour before the Medrol, then breakfast, then the Medrol. I also take Hydrochlorothiazide twice a week to help with fluid retention. It is super important to cut back on salt and purines (you have to ditch organ meats, bluefish, processed meats, and even certain legumes), eat veggies with light meat—mostly boiled stuff—and have snacks like fresh fruit, cottage cheese, or yogurt. I also make sure to get plenty of potassium (I drink homemade tomato juice) and magnesium (the fizzy tablets). On top of all that, I do moderate exercise and swimming.
What can I say?! The bottom line: the pain stopped in less than two days. Thank God for Medrol—bless whoever invented it! Whatever side effects or potential consequences there might be, they couldn't possibly be worse than what I was already going through! And bless my rheumatologist too; she told me, "I could have given you the steroids right away, but I can't do that without a formal diagnosis..."
When my physical therapist looked over my results one day, he actually let out a little "Whoa!" and said, "Man, what a summer! You're lucky you only have four limbs...!!!"
Just be really careful with corticosteroids. Follow the instructions exactly—don't skip doses or go over the prescribed amount (I even made myself a little chart with dates!), and whatever you do, don't stop taking them abruptly (like if you're worried about side effects)—that is the most dangerous part!
I hope my story helps someone out, and I'm wishing you all the best with your treatments. In our healthcare system, you really need all the luck you can get. Sometimes it feels like you can only navigate this if you're healthy, in great physical shape (it took me over 20 minutes just to climb the stairs to the clinic!), and mentally strong—plus being educated, resourceful, and having at least a little bit of extra cash to spare.