Does any one else have Crohn's Disease?
I’m 13 years old and I have Crohn’s Disease along with R.S.D. and also Juvenile Arthritis. I could possibly have lupus. I’ve finally figured out how to control most of the Crohn’s Disease flare-ups with natural remedies but my other problems are full fledged still! RSD, Reflex Sympathetic Dystrophy, will literally make my legs turn blue, cause me to lose any feeling in my legs and arms and I cannot use my legs sometimes when the flare-ups are really bad! Juvenile Arthritis is something else I could possibly have. No doctor has confirmed it, yet and I’ve had to travel out of town to see rheumotoligists before because the ones in my town didn’t know what to do with my conditions!!!
When I was 6, I was diagnosed with Crohn’s Disease. Now keep in mind that this was after coming to the hospital about twice a week for about 4 years because my Crohn’s flare-ups were so bad! My mom is a redhead, I like to call her hothead!, and thankfully she won’t take no for an answer!! She was extremely persistent in trying to find the cause in my horrible stomach pain even though almost every time we went to the doctor, they would tell her I was just fine! This was all before I was diagnosed. Eventually, she found a doctor that somewhat understood what we were going through (mainly her at the time, because I was very young) and tried all the possible treatments that could help ease the disease. Even today, there is no cure for Crohn’s Disease!! At 6, the doctor that helped us diagnosed me with Crohn’s Disease and put me through a series of medications including some that children aren’t allowed to take. I took Methotrexate for a long period of time and cannot think of the other medications right now. I now have to wear glasses because of the medicines I took and my family and I are pretty sure that the medications I took caused my other conditions. We’re pretty much certain that the medicines cause my RSD.
Reflex Sympathetic Dystrophy (RSD) is an illness that causes the lower and upper extremities to turn a bluish color and causes the extremities to become numb. When I first had a flare-up, it was when I was 11 and my parents thought it was a blood clot. So did the doctors. We went through a series of tests that day because I had to go to the hospital. I was admitted for a week and during that time, I had to get an epidural!!! Yes, that thing pregnant women get! I had to get it because my legs were hurting so bad they had to numb them! We’re still not sure if what I have is RSD, but it’s all we got for now!
I know this is long and sorry but I only gave you two of my illnesses! lol If any one else has any thing I have, please give me tips on how to control it! Anything will help!?Thank you!!!
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Tagged with: 13 years • arthritis • crohn s disease • flare ups • glasses • hothead • juvenile arthritis • legs • Lupus • medications • medicines • methotrexate • natural remedies • period of time • redhead • reflex sympathetic dystrophy • rsd • stomach pain • upper extremities • ups
Filed under: Crohns Disease Mind and Body
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Hi there. I don’t have Crohne’s Disease, but I’m 25 and I’ve had Complex Regional Pain Syndrome (the correct name for RSD) since I was 14. It started in my right knee following a minor operation, but it now affects almost my whole body and ahs put me in a wheelchair because of some of its secondary effects that no amount of physio or medication has been able to counteract. I’ve never heard of medications causing CRPS/RSD - it’s almost always initiated by some sort of injury or other trauma.
I wish that I could tell you how to control it - I’ve been through pretty much every recognised treatment with no real success. I guess that my only advice for what it’s worth is to take each day as it comes and to recognise that you are going to have bad days. Don’t give up by any means, but know your limits and boundaries, and know when it is time to say ‘okay’ I’ve had enough and when it is okay to push yourself that little bit harder.
If I can help in any way, please feel free to email me.