How Do You Describe A Flare To Someone Who Doesn't Have RA?
My flares aren't always exactly the same but yesterday I flared badly. I can describe it to my daughter, sorry guys most women will get this, as the overwhelming body aches and exhaustion on PMS. My entire body feels swollen and it throbs and joints ache like a fever. For my hubby and son I can only describe it as throbbing and aching in my entire body. and exhausted like I've run a marathon and haven't slept for days. And even with all that, it doesn't really describe the feeling. So I'm… read more
Feel like tin man after a few bad winters and very rusted joints and trying to move without a can of Wd40
Broken glass rubbing together whenever you try to move one tiny centimeter.
My flares were endless, daily for months and months and unbearable in both my wrists and sometimes both shoulders. It was tough and I posted here all the time. Trying this, trying that nothing worked.
Only thing that worked to take away the broken glass rubbing inside my wrists feeling during that time in my life was 30mg of prednisone everyday for a whole year. Dr was a quack keeping me on that dose so long. Blew up like a marshmallow and actually developed man made Cushing Syndrome.
Finally Broke free from the old fashioned quack dr and found a young modern female RA specialist. She fixed me up fast. Had to blast me with three meds but it worked. Hydroxychloroquine, Avara and Rinvoq after a few months the Fluid buildout gone, lost 30 lbs, hair started growing back and NO flares like that since I started with her 3 years ago.
Today reduced down to Rinvoq and 1 800mg ibuprofen daily and 2.5mg of prednisone every other day.
So thankful, and never though I would get better!
Folks, it you cannot get your dr to listen to you that you are in unbearable pain and you are not getting better, don’t suffer for a year like I did, get a new dr fast!
Flares are so unpredictable, and my symptoms can vary in lots of ways.
First thing is intense body aches and fatigue from head to my toes. Next, I have foggy brain and my tongue feels so thick that I have a hard time conversing very hard. Memory! Finding and spelling words is compromised. No appetite and sometimes I can be vomit nauseous for a week.
I have joint pain my neck and extremities.
I’ve been extremely grateful and blessed with a great cocktail that is working!
My past blood work was excellent, with only 1 slightly elevated inflammation marker. I’ve had so much energy and I’m celebrating
Nora, & Ginger Mae.... Hugs to you both. I have terrible follow up skills but I just opened this discussion and saw that Nora just posted. I want to let you know that I have had a long battle of misdiagnosis and have finally found a medicine that works enough for me to have have long periods of feeling almost normal. I have osteoarthritis and RA and my Rheumatologist has put me on Hydroxychloriquin (yes, that one). I take 200mg once in the morning and once before sleep. My sleep is bit wonky, but I can sleep with little pain and by 10:30, after the 7:30am morning dose I am pretty good. I am able to function in my crazy life... I am 56 and live in a small 4 story home (lots of stairs) with twin college freshman and a 24yo brother (all remote learning from home), two 85lb coonhounds and my husband who is a hospital executive, all who I have to clean up behind. I am sort of lucky that my RA is something one can see, as I have red swollen hands and my hips feel hot to touch. My biggest problems are my hips and my hands. I have finally got my family to hear me, through these fun newer symptoms. Though, now they get mad when I do stuff (clean the garage) while I feel well, because I am guaranteed to be down for two days after. I now plan on being down, after fun longer days. I am clear with everyone that I probably wont be able to cook or do laundry for a couple days if we do "this". That being said, I am able to do stuff... I just need a long recovery window. I have learned through other illnesses that being able to "do" with joy and plan that you are going to hurt during another window, allows our family to understand and to give empathy/support during the painful windows. I try not to chronically complain, but acknowledge pain with a number or a "I feel medium" today. You got this. When you get the right medicine for you... Plan happy/normal windows of time. This is the perfect place to share and seek guidance. I hope that you find comfort knowing you are not alone and that we all have to pivot and find workarounds for so many workplace changes, and sometimes we have to do it for pain/mobility issues. I am happier with my life when I can say yes to normal things, even though I have to say no to two consecutive day things. ALL OF THIS... is simply to say what works for me, is to objectify RA. It is like my body is my car and sometimes it is in the shop or just out of gas. I had to learn that I cant complain about the thing I cannot change, but I can control just enough to squeeze joy out of everyday.
The first full on flare, the one that I finally understood what a flare was, made me want to die!! My lymph nodes in my neck swelled to the size of eggs. I felt like I was being strangled, choked swallowing even water and I couldn't lay flat because the swelling suffocated me. I ran fever, freezing with chills, both legs, hands swelled and couldn't lay on my hips. I couldn't walk-hobble 20 feet without stopping to rest. It was the worse pain I've ever felt. I couldn't stand for longer than 5-8 minutes so I used my 73 yo mother's shower chair. Finally hiding, sitting in my mother's shower chair, I would let it all out. I would ugly cry, sobbing, praying and calling out to God for strength and help. I hurt from head to my toes! Everything throbbed, pulsated, went numb, prickly, sharp shooting pains and my back felt like a band was around me. From the top of my shoulder blades to just below them, felt like a squeezing tight rubber band constantly binding me. It went from a throbbing ache to the entire area feeling like I was on fire! It took cortisone shot, pain shots 20 day round of prednisone and finally caving in to start methotrexate, for me to get any relief. I also started meds for my mixed anxiety & depressive disorder. I had not realized how far I had fallen into depression. I thank God everyday for getting me through that and I pray for strength and the right treatments to keep me healthier.
Has Any One Had All Thier Joints Flare Up At Once?
Any One Any One Repair Such As ACL And Meniscus Tears. How Was Recovery Did You Need MAU? Manipulation? Was It Better Or Worse ?
How Do You Describe Your Pain With RA?