I just wanted to let everyone know that this website has been extremely helpful to me during my most recent catastrophy.
I am 29 and was diagnosed with JRA the first time I learned to walk. I have now learned to walk approximately 8 times. As a toddler, I was also diagnosed with Lupus, but it took a backseat to the JRA. Both have been in remission for years.
Last year my knee (which is where my arthritis decided to nest) finally collapsed (something we knew would happen eventually) and I had my knee replaced August 1, 2005. Now that I have had that area "fixed", I feel as though I am starting over with the illness.
Prior to the surgery, all of my blood tests for RA were coming back negative. My surgeon (who has performed at least 4 of my surgeries) stated that most "out grow" JRA and are just left with the damages caused by it. But then after the surgery he stated that he was amazed because my knee was still "angry" and I definately still have arthritis.
The biggest problem is now I don't even know what type I have and this is the first I can recall ever dealing with majority of these symptoms. I remember having major stiffness and pain when trying to move, but now I'm experiencing MAJOR fatigue, insomnia, weakness all over and heavy swelling in my feet and ankles. It's as if when the sun comes up, my body wants to go to sleep; but when the sun goes down, my body wants to stay awake!
I'm not taking any medications due to the fact that since I have had stuff pumped into me my entire life, I try not to take meds unless I absolutely have no other choice. I also do this because whatever med I am put on, it's only a matter of time (year max) that my body develops an immunity to it. Even Tylenol Arthritis, I can take one day and it works well, but if I take it the next day....it does nothing.
I'm also having a difficult time concentrating and staying focused at work, which is a big problem. I work in quality management for a small, yet fast growing behavioral health agency (SEABHS) which is the only service provider for 4 counties of southeastern Arizona, and there is only myself, my supervisor, and one other person (who does nothing but audit client records) in the department. One of my many duties is creating databases to capture all the results from the internal and external chart audits and then putting them into a report format. Now the higher ups are noticing my capabilities, and of course, now my health starts falling apart again and I haven't even been back to work for 1 year since my last medical issue (knee replacement). So of course I'm worried about letting my work slip and losing my job.
On top of everything else, I'm a single parent raising a 4 1/2 yr old little girl who is determined to be the world's first female Evil Kaniville. I feel horrible when I have to tell her that we can't go to the park because mommy is too tired. It's bad enough that it takes everything I got to keep from falling asleep during the 1/2 hour drive home. I am living with my mom right now and she has been a great help, but she has her own medical issues she and her docs are trying to figure out right now. (My whole family are walking medical disassters!)
I will be going to my PCP this Friday to sit and talk about everything going on. I know I won't walk away with any answers, but I'm hoping to have a satisfactory plan of attack.
Well, if you've read this far, thank you for listening. I really needed to get my story out there and just vent to people whom I know can relate and understand.
Thank you - Red Fraggle
I know you said that you don't like medicines, but what have they tried for the RA specifically. Also, are you seeing a Rheumy or just the GP?
You may have to break down and tell work about your illness. They will have to make accomodations for you. You should check out www.jan.org. If you do this, do it with a doctor's note.
Your symptoms sound more like Fibromylagia rather than RA. If you are not under the care of a good Rheumatologist, you should be. I think you need to be tested more. There are plenty of people here with RA that never have it show up in their bloodwork.
It is possible with all the meds you have had in your life that your biological clock as been flipped. They might treat this with antidepressants or other meds. I think a full blood work is really necessary here. Also get them to check your thyroid levels. This can really throw one off and can have a big affect on fatigue.
You might also want to visit 4RATALK.com. There are several people there that had JRA and now have RA. They might be able to give you some better perspective from their own experiences.
But welcome here and I hope you can get some answers soon.
Oh, and ask lots of questions because someone always has something similar. Most of us hang out in the RA section.