Company’s calling: sudden onset of rheumatoid arthritis
It’s National Arthritis Month, so it’s only fitting that today Karen Smith joins us here for Help My Hurt’s Company’s Calling feature to talk about her sudden onset of rheumatoid arthritis. Karen is a software support consultant, from Keswick, Ontario, Canada, a very small town north of Toronto.
Can you tell me about when you first started experiencing the pain and what kind of pain it was?
When I first experienced the pain, it was restricted to the index finger of my right hand. I noticed it at work when I tried to do certain things such as squeeze the stapler or type for extended periods of time. It was a mild pain, almost like I’d sprained my finger and it was sore to use, but not very sore to touch. A few days later the index finger on my left hand started to feel the same way. A few days after that, all my fingers were sore and achy and I couldn’t grip things very well.
Did you seek help right away? If so, what type of help and, if not, why not?
I sought help when the pain moved to other areas of my body. All within a two-week period the stiffness and achiness went from my hands to my shoulders to my ankles. Though my hands weren’t swollen, my ankles started to swell, and quickly. I was concerned it might be a heart problem, so spoke to my doctor’s office and got in to see him the next day. He was concerned that the symptoms were systemic, that is it wasn’t just one finger or one hand or one ankle, but that when one hand was affected so was the other; when one ankle was affected, so was the other.
His initial thoughts at the time were because I drank a lot of milk, maybe the antibiotics that are given to cows was affecting me. However he was also concerned about rheumatoid arthritis, as often times RA occurs after flu-like symptoms and the symptoms are systemic (and I had a bad case of something; the flu or food poisoning about three weeks prior). He immediately put me on an NSAID (nonsteroidal anti-inflammatory drug - called Ultradol) and referred me to a Rheumatologist. My wait for the Rheumatologist was 6-8 months, however I was able to get in on a cancellation after 7 weeks.
What did the doctors tell you when you did seek help?
My family doctor suspected rheumatoid arthritis, ordered blood work, and referred me to a rheumatologist right away. A follow-up to my family doctor showed that my Rh factor (that confirms an RA diagnosis) was not very high. However other results from the blood work caused alarm, including a lot of swelling. After approx 7 weeks I was able to see the rheumatologist. By this time I was extremely tired all the time, and my entire body hurt. I had night sweats which were awful. The rheumatologist reviewed the body work and said though my Rh factor wasn’t high enough to confirm RA, based on symptoms that I had he made the RA diagnosis. He wrote a prescription for Plaquenil (Hydroxychloroquine) and Methotrexate (these are DMARDs - Disease Modifying Anti-Rheumatic Drugs), and I was to continue with the NSAID. I also had to take Iron supplements due to anemia, and folic acid because the Methotrexate depletes the body of folic acid.
What have you tried to help you with your pain?
I’ve tried a heating pad for the achiness, ice packs for the swelling, and Ultradol (NSAID/painkiller), and Tylenol Arthritis. I’ve also tried doing gentle exercises.
Can you tell me a bit about what worked and what didn’t?
The ice packs help reduce swelling, which actually reduces some of the pain. The Ultradol and Tylenol help with pain management.
Oddly enough the gentle exercises work. Even though the movements cause a mild level of pain, I do feel a bit more range of motion movement and less pain afterwards.
How does having this pain make affect you in terms of how you live your life?
The pain I have now is much milder than when I was first diagnosed. The first 3-4 months of my RA diagnosis was very painful for me. I had to take time off work; I couldn’t type, I couldn’t grip anything so was unable to hold a fork and knife or even open a shampoo bottle. And I was always tired due to the anemia. Once the medications started to work, I very slowly started to have somewhat of a ‘normal’ life back again. It’s been 10 years since my RA diagnosis, and though I still have pain, it’s not nearly as bad and I only manage the pain now with Tylenol Arthritis (though I still take the DMARDs). I can function fairly well, though my knees and hips do get very sore if I don’t rest often. I cannot lift my left arm above my head, I cannot kneel down, and I cannot make a tight fist, but I manage to live a fairly normal life.
If you were to look back over what you have tried/haven’t tried, would you change anything? If so, what would you change?
I wish I had done more range of motion exercises or seen a physiotherapist when first diagnosed. It may have helped me with the loss of range of motion that I have now. Though I do range of motion exercises now, I fear I’ve got the “use it or lose it” syndrome and have lost a lot of range of motion.
I would also like to try acupuncture, and tai chi. The acupuncture may help with pain management, and the tai chi will keep my body moving so I don’t lose any more of my range of motion.
What would you say to someone in a similar situation who is just starting to try to find treatment and relief?
I would tell them to do as much research as possible into their situation, whatever the diagnosis. Learn what works for you and what doesn’t. Some medications don’t work as well as others. If you’re still in pain, talk to your doctor about increasing the meds, trying new meds, or even other alternatives. Sometimes the medications take awhile to work, so hang in there. And don’t overdo things. If you’re in pain, don’t try to do more than you can handle. If you need help, ask for it! I find family and friends are more than happy to help, all I need to do is ask.
Would you like to add anything?
Sometimes my pain made me cranky and irritable. I may have been exhausted from a painful and sleepless night, or was too sore to do anything and didn’t want to go out or want company to come over. Often times my friends just didn’t understand the level of pain I was in.
What I do now is I let them know my pain level out of 10, and that helps family and friends understand how much we can do that day, or that I’m in a fair amount of pain that day and may need assistance with things.
In addition, I find that stress often causes flare-ups, so I try to do my best to limit or reduce my stress (I know, easier said than done sometimes!). If I’m having a bad day, rather than trying to do too much, I’ve learned that I have to take care of myself before I take care of smaller things like housework. Those dirty dishes are still going to be dirty tomorrow, so if I don’t have the energy or am too sore to get them done today, then I’ll rest up and get them done tomorrow. I fin if I don’t take care of myself, no-one else will, and my health, well-being, and pain management is important to ME.
Thank you so much Karen for sharing your story. One often thinks not only of RA as being an older person’s disease, but one that comes on gradually over a few years. By sharing your story, if anyone else is experiencing similar symptoms, perhaps they’ll feel more confident about getting them checked.
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POSTED IN: All Things Arthritis, Company's Calling, Rheumatoid arthritis
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