Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
Hi everyone. I'm new to this forum and to RA. I was diagnosed the first of September. I've actually had problems for at least 7 years. I've always had a high tolerance for pain and I am good at overlooking aches and pains. I will be 50 in March so my thinking was "I'm getting older".
I hurt from my jaw to my toes. I guess the thing that finally sent me to a doctor was the EXTREME FATIGUE. OMG, it was aweful. There were days I thought I would have to crawl in my house after work! Driving home I would prop my head up with my hand, which my arm was propped up on the door. haha
There were days my bones hurt so bad, I just knew they were on fire. Oh, let me not forget the sickness. I was to the point of going to pcp every 6 weeks for some type of throat or cough problem. This past August I had pneumonia and didn't even know it! Well, I knew I felt bad and my chest was tight and it hurt to take a breath......just didn't know it was pneumonia.
I made a decision this year to find out what was wrong with me. So I started with my thyroid....already was taking meds because I knew I had a problem. Only thing is, I was getting my meds from my ob/gyn. I changed and started seeing a Endocrynologist. I was really hoping that was the answer to my problems. He changed my meds and dosage and that helped a lot. So, after some thought, I decided to sit and write everything down on a pc of paper. Well, turned out to be 5 pages. I was shocked!
I found a Rheumatologist thru a friend. She loved him. I took my history and faxed it to his office....thinking that if he didn't want to see me, I wouldn't have to be told face to face I was crazy -
His office called and set me an appt.
He tested me for a gazillion things...at least that's what my blood supply thought!!.. He was really leaning towards Lupus. Turns out those tests didn't show Lupus. But my RF was almost triple and my inflammation was off the charts and running rampant thru my body! Those are his words.
He has me on 5 mg prednisone daily and 400 mg plaquenil daily. I can't believe the difference !! I am better....not 100%, but manageable!
I made it from Sept thru 2nd wk of December without getting sick. That's a record. But since then, I've had the crud and on my 2nd round of antibiotics plus had a stomach virus...ugghhh
I want to talk about the EXTREME FATIGUE. I can't believe how bad I got. My doc said I had so much inflammation that even with everyday activities, it was too much. I got to where I couldn't even sit down without propping my head up. Folding clothes was such a chore.
I have an inground pool and have always loved getting out and sweeping it down - got to the point I couldn't do it
The fatigue felt like gravity was pulling me down - like I was melting.
There were times when the muscle fatigue was severe as well. I could barely get up off the couch or off a chair. And, I better not sit on the floor...my knees and feet were of no help.
Looking back now, I can see I was having flares - or maybe I was in a very long flare. Everything just seemed to happen over a period of time...not all at once....just gradual.
I'm in a happier place joint and fatigue wise. My doc says I have early/mild disease. But honestly, the symptoms felt severe. I have to visible signs of RA but boy do my insides tell a different story!
I hurt from my jaw to my toes. I guess the thing that finally sent me to a doctor was the EXTREME FATIGUE. OMG, it was aweful. There were days I thought I would have to crawl in my house after work! Driving home I would prop my head up with my hand, which my arm was propped up on the door. haha
There were days my bones hurt so bad, I just knew they were on fire. Oh, let me not forget the sickness. I was to the point of going to pcp every 6 weeks for some type of throat or cough problem. This past August I had pneumonia and didn't even know it! Well, I knew I felt bad and my chest was tight and it hurt to take a breath......just didn't know it was pneumonia.
I made a decision this year to find out what was wrong with me. So I started with my thyroid....already was taking meds because I knew I had a problem. Only thing is, I was getting my meds from my ob/gyn. I changed and started seeing a Endocrynologist. I was really hoping that was the answer to my problems. He changed my meds and dosage and that helped a lot. So, after some thought, I decided to sit and write everything down on a pc of paper. Well, turned out to be 5 pages. I was shocked!
I found a Rheumatologist thru a friend. She loved him. I took my history and faxed it to his office....thinking that if he didn't want to see me, I wouldn't have to be told face to face I was crazy -
His office called and set me an appt.
He tested me for a gazillion things...at least that's what my blood supply thought!!.. He was really leaning towards Lupus. Turns out those tests didn't show Lupus. But my RF was almost triple and my inflammation was off the charts and running rampant thru my body! Those are his words.
He has me on 5 mg prednisone daily and 400 mg plaquenil daily. I can't believe the difference !! I am better....not 100%, but manageable!
I made it from Sept thru 2nd wk of December without getting sick. That's a record. But since then, I've had the crud and on my 2nd round of antibiotics plus had a stomach virus...ugghhh
I want to talk about the EXTREME FATIGUE. I can't believe how bad I got. My doc said I had so much inflammation that even with everyday activities, it was too much. I got to where I couldn't even sit down without propping my head up. Folding clothes was such a chore.
I have an inground pool and have always loved getting out and sweeping it down - got to the point I couldn't do it
The fatigue felt like gravity was pulling me down - like I was melting.
There were times when the muscle fatigue was severe as well. I could barely get up off the couch or off a chair. And, I better not sit on the floor...my knees and feet were of no help.
Looking back now, I can see I was having flares - or maybe I was in a very long flare. Everything just seemed to happen over a period of time...not all at once....just gradual.
I'm in a happier place joint and fatigue wise. My doc says I have early/mild disease. But honestly, the symptoms felt severe. I have to visible signs of RA but boy do my insides tell a different story!
Therefore they started testing for autoimmune and found RA and Fibromyalgia. The fatigue is very upsetting. It would take all I could do to hold a blow dryer up to my very short hair to blow dry and then I would put a few curls in my bangs and the pain in my muscles and joints were on fire, or if I tried to wash dishes my body felt like it had lead in it. Everything would swell up.
I'm glad you are getting relief now. That's important and I think it was very smart how you cataloged all of your symptoms and faxed it to the doctor. I never would've thought of that. Very brilliant! I hope you have a wonderful new year!
I got better after starting Plaquenil but really struggled with the weather changes.
Welcome to the site. I don't live in Texas, but my rheumatologist is there.
By the way-WELCOME to our world :)
Gentle hugs
welcome
welcome
welcome
we are glad you are here
i liked your post. it made me remember the year before i was diagnosed. and how i would tell friends that i felt fatigue only similar to being pregnant. and what the hell for? this segued why did i feel like I had the flu and a lo grade fever, and the flu joint pain everywhere but in my hair and head? how come the flu was not in my lungs?i was in fight or flight mode. you are this fatigued you sleep and then feel better., right? i remember at this point i literally called one friend EVERY night to talk about this fatigue. the rheumie that i first visited was nonplussed and tefloned from this complaint from patients in general, but I have an angel now for a rheumie.
I am in a better place now also, isn't it great? it is so hard to put the puzzle pieces together when trapped inside it.
hugs
Ros
I didn't mention brain fog. There were days I seriously thought I was going crazy. I would forget words...replace one word for another word....or try to say something but something totally different came out of my mouth! Oh and the concentration issues...at times I couldn't stand more than one "noise" at a time....just too much on my brain!
Yesterday morning I woke up with a terrible headache....finally realized I forgot to take the prednisone...
Last year my new years resolution was to find out why my bones hurt and why I had extreme fatigue....Accomplished.
This year I want to get RA under control anf find out if I have something else going on. And to start exercising again. My husband has agreed to start walking with me....that's a biggie for him..haha
About 2 years ago I started the c25k program. I was jogging 1/4 mile and was soooo proud. My right hip/knee hurt but I pushed thru it. Big mistake. I woke one morning with pain so intense it felt like someone had a screw driver twisting in my hip and knee. I felt like I had the flu but 1000 times worse. Took several months to ease but took almost a year to go away. You would think that would have made me seek help...guess I just wasn't ready to admit something was wrong. I have so many stories like that...I could bore y'all all day.
haha
Ok, I hope everyone has a happy painfree day! I would LOVE to have one painfree day!!!!
Is going well. I once had to pull over while driving to sleep; the fatigue
Is wild!!! I love the faxing of the doctor bit! Brilliant!
I am recently diagnosed too (and also
from TX).
Welcome to the group. Everyone is so terrific here. Big hearted , knowledgable and funny!
Same ordeal as you. Signs that went back 6-7 years before diagnosis. It's a crazy road we are on, for sure!
Hardest part is not being able to do as much for my two kids (5th and 7th grade). I happened to have a great doc, who treated me super aggressively. I reacted to the methotrexate, but I am positive that the Enbrel put me in full clinical remission - and when I had to go off all med due to the methotrexate/liver complication, kept me in remission since Dec 2011. Even my blood work supports remission. Remission w/o medication means that I feel mostly normal, but if I walk a mile, the bottoms of my feet start to hurt. If I do something hugely physical, the next day, I will ache. But, mostly I'm good. One day, Enbrel and I will get back together. I know our bodies can reject a biologic at some point - so I want to wait til I NEED it.
I hope the plaquenil does the trick for you!
Welcome - keep living life!