Hands, feet, knees, ankles, and now elbows and shoulders, whats next?

By dayc

2 min read

I'm 48 now, I felt my pains at the age of 10 my mom took me to the Dr. and I was told it was growing pain. Well as the years went by and I got older I notice the pains would come and go so I didn't talk about it. My friends would notice as well as my cousins whenever we played basketball, or handball or any sports/games like tag I was always in pain and even fatigued. As time passed I grew with having the pains and just adjusting and living with it my hands would hurt a lot my wrist then my knees and hips at 19 after several testing they diagnosed me with RA no one in my family has it so I assume I got it by, who knows?

Then it got worse

I got really bad when I became pregnant with my 1st child. After having my child I got bad for a couple of months meds were just pills at the time. Then 3yrs later my 2nd child and WOW after having that one I got really bad my hands and fingers. Mornings were stiff and my voice would come and go in weird ways.

In comes treatment

I was put on Enbrel then mtx pills, and they had horrible side effects. The worst was Humira with mtx. I was then 2yrs later on my 3rd surprise baby, whom I love so much and thank God no harm was done from the meds after having my 3rd. Wow, my RA has been taking a toll on me lots of different meds then went on to more aggressive ones and it only lasted for about 2 to 3yrs before it stopped working for me.

I'm on Xeljanz now with Plaquenil, which is not doing much, but I've been on them all for
Fibromyalgia and OA too. I've had side effects of thinning hair, loss of appetite, had toes reconstruction, horrible They are worse now after 6mths crooked and hard to find shoes crocs worked for about 5yrs now I wear slippers out. Horrible Even on special outings my elbows are locked and bended. My fingers are crooked, they hurt so bad. Feet are my worst pain, had both knees done and I'm sure hips and shoulders are next.

Support from family helps me through Overall I have a wonderful husband and kids, my support team. Life changed and so did theirs it's hard but a good support team wonderful pets and a lot of meditation has helped me to sometimes forget and ignore, at least in front of my favorite people, my family. This is my story thanks for your time.

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hwb0w4 Member
Wow! You've been through much. Sorry to hear that Dayc. That's unusual about how your babies all affected your RA. I've heard many say that they got the first symptoms while pregnant or after they delivered their first or second child only, like myself. That's interesting. I hope that the Rheumy's are making note of these unusual patient histories. That is a shame that you have been suffering throughout the years with no help from Drs. Others have mentioned the "growing pain" theory. Ridiculous. Most of the meds didn't work for me either. You're not alone. The biologics did nothing for me. Xeljanz worked for 3 mths. then i ended up in the hospital with sepsis and other stuff. Imuran worked the longest and best for me. My cousin was the only one who had RA(JRA) before me although I didn't know what he had. He was 10 also. Turns out my great aunt and uncle had RA also, way before me, although they lived far away. Ancestors back then usually didn't tell others about diseases they had or were not dxd. That's too bad about the outcome of your toe surgeries. You could get shoe inserts maybe, so that you could wear regular shoes. A Podiatrist may be able to help you, if the Rheumy cannot. Thank you for sharing your experience. I'm so glad that your family and pets are helping you. It certainly means a lot.
rockcandi Member
You really have been through the wringer! I am so sorry to hear all you have been through. I was diagnosed at the age of 6 with JRA. But after I didn't have any more big flare ups I never saw a dr and the fact that I had the disease was pretty much ignored. I finally received a dxd of JRA and SLE when I was 30 years old. I had similar experience with my 2nd and 3rd pregnancies. (I only have 1 living child but was told that my early miscarriage: 1st pregnancy at 19 yo: and that my daughters congenital heart defect: 2nd pregnancy at age 21: had nothing to do with me having RA and SLE) I got pregnant with my now 2 yo at the age of 33 while in the middle of a moderate flare. I gave birth to him when I was 33 weeks pregnant and I had the worst flare up of my life immediately but fortunately it only lasted about 7 weeks. However the effects of carrying a baby for 33 weeks caused immense changes in my body resulting in horribly severe pain.
Monica Y. Sengupta Moderator & Contributor
Hey dayc! Thank you so much for sharing your story and I am so sorry that you have had such a run of this disease. Please know you can always reach out to us if you need to! ~Monica (RheumatoidArthritis.net Team)