Hello. I am a 38 yr old woman who was diagnosed with what was then called Chronic Fatigue. I have now been diagnosed with Fibromyalgia with a possible diagnosis of Lupus or Rheumatoid Arthritis along with the Fibro. What is the most scary for me is my children. My 11 yr old son tested positive for Rheumatoid Factor and was later diagnosed with Poly Juvenile Rheumatoid Arthritis. He also has asthma & tests negative for allergies in a scratch test and by blood. Now he is having trouble with his bowels. That being said he is an active and happy child most of the time. He swims well but his real love is baseball. I hope he can continue to do what he loves but I’m not sure how he will do as he grows. I have to admit that I hate to think what pain he lives with on a daily basis. I can live with my pain because I have to, because it is what it is. But he is only a boy. Does anyone else feel this way?
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That’s really sad I live with pain couldn’t imagine how I would feel if my child was in as much pain as I I’m so sorry wish I could help him
Thank you. I wish I could, too.
IBS goes with Fibromyalgia. Recent research has said fibro is possibly hereditary. That being said, he may have fibro. But maybe you and him can work through your pains together. It helps to have someone close to you know what you’re going through, to talk to, and to compare notes with. Hopefully there will be more awareness of both his conditions by the time he is older.
Good point. At least I can be understanding about his pain. Thank you for making me see the best of this situation.
This may or may not matter, but I, my sister and brother all had asthma and a host of other breathing issues when we all lived where we were born: Oklahoma. My parents, getting tired of constantly dealing with those issues asked the doctor what to do? He said move to Hobbs, New Mexico. We did, and wow. No asthma, no croup. We lived happily ever after. For whatever it is worth. Hobbs is high, like a mile high and dry.
We’ve thought about moving in a few years but more for the arthritis than the asthma. I wish I knew what he was allergic to or if he is allergic to anything. All of his scratch and blood tests were negative for allergic reactions. I’m under the impression (and I may be wrong) that some Rheumatoid Arth. conditions can cause swelling in other areas of the body besides joints. I.E. like lungs.
I have rheumatoid arthritis,fibromyalgia,allergies,sinus & bronchitis problems. My kids have IBS,allergies,diabetes-type one for 20 yrs.(daughter, 26,now),&migranes.My RA wouldn’t show up on bloodwork. Finally after years of chronic pain & many Drs.,my new Rheumatologist ordered x-rays of my wrists & ankles.Proof showed on the x-rays,& she started treatment. It helped so very much to finally have a diagnosis!!!! Kids knew I was hurting right along with them,so they understood why they needed to take their meds.Plus, we had to cut down on activities & read a lot of books! We all learned to each take our own book to Dr.appointments to help pass the waiting time. Kids are able to compensate & adapt if we give them the chance. They react how we react. So even though it’s hard to see them in pain, don’t panic or make a big fuss.Got to take life in stride! Prayer & faith helps a lot, too! ESP. for us moms!!
I know what you mean, Beth. Going through endless tests is hard on everything. Your wallet, your emotional state…everything. I’m so glad you have a diagnosis and have found some relief. 🙂 You are also right about the way we handle things clues them into how they handle things. Don’t worry, we don’t make a fuss but here where he can’t see my worry and heartbreak…well this is where I can talk about my struggles. For my son the activity level has to be just right. Not too much, not too low or he has more pain.
I see you wrote this at 3 in the morning. You forgot to mention insomnia.
My best therapy is helping someone else. It helps me not look at myself so much.
Does wonders for my depression.
You sound like a really GREAT mom!!!!!! Moms have the hardest, most important, & best “job”ever! Dads ,too! I hope today is a good day for you & your family!!!