Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
I am new here I have JIA in my jaw and have to have a Bilateral joint replacement, but I have to wait till 2018 summer when i graduate and when my growth plates close. I am 15 almost 16 years old. I have sever pain i normally dont eat anyore ive lost 20 pounds and am started on a new medication called Humira maybe some of yall have taken it before? Well I am having some issues it helps a little but not enough the pain for the past 3 weeks have been so bad i have been puking. I have tried heating pads, ice, advil just about everything my doctors have recomended for me to do for my pain. I have also been catching a lot of illnesses due to my mmune system being nonexsitant. I am stressed and need som pain mangement skills. Does anyone have suggestions that have helped them. I have turned to suicide being my way out, but I have rethought it due to my little sister and my niece. If anyone has any tips please let me know!
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I've been on high dose prednisone for pneumonia, and now I am slowly weaning. But lots of symptoms I don't like having, plus overeating has put at least 10 lbs on me. The food is "loud" as the GLP-1 users refer to it.Also pressured speech. Which comes out in my posts. Sorry I posted so much. I just need an outlet for my agitated and irritable brain. Just scroll on by my posts, if they are too...
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I haven't been around in a long time. I am admin in a private group, and I would like to upgrade someone else to that position. I thought I knew how to do that, but the prompt has gone missing. Or is it not allowed to upgrade someone else to admin? I just find "ban and demote" under "Edit." I don't get notifications to DS anymore, but I wil come back in a few days to find out the answer. There...
Who is a person you trust to talk with you about your pain and that you've considered suicide? A School Counselor, Parent, friend! You need to be around supportive people who will listen to you.
Talk with your doctor about your pain and that you've considered suicide. Call the National Suicide Prevention Lifeline: 1.800.273.8255
Do you have access to a warm therapy pool? Maybe through Physical Therapy or the YMCA. That helps my pain. Health food stores carry Arnica gel. It's a natural pain relieving gel. It won't cure the pain, but it helps dial it down. You may have to try different brands and types of pain lotion.
I'm glad you reached out to the people here. You will get supportive feedback. I'm glad you are here, just sorry for the reason.
As for the depression, you can get through this. My cousin also got very depressed and wanted to die when she was your age. It's supposed to be a time of looking forward, but the thoughts can come, like "What do I have to look forward with this disease?" And, of course, the answer seems to be nothing!
I didn't find this out till I got RA, and my cousin became my mentor. There were no RA support groups when I got this disease. She said her parents drove her into the country every day after school, and encouraged her and coaxed out of her what she wanted to do when she graduated. She had a friend with scoliosis, who had been in the rehabilition hospital for a year with. Her friend became a teacher, and managed just fine. She got a Master's degree and went on to become a principal.
So my cousin went into teaching, but had to face the fact that she wasn't even 4 feet tall, (prednisone damage) and that she really couldn't teach in a regular classroom without extensive help. So she went back to and got a Master's degree in library science, and also studied children's literature. She did a lot of teaching in University, but they wanted a Ph.D to hire her permanently. So she applied and was getting ready to go back when they found out she had two vertebrae in her neck that had dissolved from the prednisone damage, and she had to have a plate put in her neck, and 6 months with a halo, being hand fed by people, till it finally healed.
So this is not to discourage you, because you will never have the damage she did. No prednisone use, and there were no biologics available in those days, so basically she had uncontrolled RA. EXCEPT for in her 20's. JIA tends to burn out by the 20's and she said she had some perfect years. Unfortunately, she got RA from both sides of the family, and in her early 30's adult onset RA started. So you do have something to look forward to, in that the JIA might well stop forever!
So this is to say, don't let RA stop you ! I know it is horrible and painful right now, but there are still many things you can do with your life. I went back when I was 53 and started a Master's degree and it was the best thing I couldn't have done personally, and to help others.
So don't give up, and post here often. We understand the pain of RA, if not the problems of dealing with it at your age.
I know the desire for suicide when the pain is great and you see no end in sight. But plus trust us - there is an END to it! You will NOT be in this much pain forever. What you are experiencing is a fear up.
I have also been on Humira. Together with Methatrexate it had me in remission for about two years.
I am now in my 7th year of remission on Orencia and methotrexate. remission - the total absence of pain and all symptoms - is possible!!! Please try to see this light at the end of a very dark tunnel that you are in right now.
Had I killed myself in 1995 when my flare up was out of control- i would not have ever seen my daughter get married ti the most wonderful man nor would i have ever seen my three grandchildren! I am so, so grateful for the help I got when I felt suicidal and so glad I did not do it!
My life is full and productive today - and happy! I am 72 and a I exercise 3 times a week and attend a rock-n-roll dance monthly and dance like no one is watching!! Life is good, even with RA.
Call your local hospital and see if there is a JRA support group.
We're all here for you!! Hang in there and talk to your doctor about how bad the pain is.
The Buddha says: "Everything has a beginning, a middle, and an end." EVERYTHING! Try and remember that.
Suggestions, google the diet that Quarterback Tom Brady eats. Get someone to go to a health food store and get you a bottle of Frankincense oil (will not hurt you at all).......put a drop on your finger and rub it into the area where your spinal column goes into your skull, that could help tremendously with your anxiety.
So getting some pain relief is so important first. Then you can think a little more clearly about all of the other issues of having a chronic illness - between tests, doctors visits, treatments, and how you WILL make this fit into your life. Overtime, things you cannot do may come back into your life, and you will discover new things you like to do that may fit into your life better.
Find someone - friend, relative, counselor, clergy person, or whomever that you can trust to talk with, especially when you are feeling depressed or feeling like you may want to hurt yourself. Or call the hotline number posted earlier above. You will get through this - like all the other folks here.
The thing is, most people (especially women) keep waiting for someone else to come along and fix things for them. You already know that you have to be your own advocate. Speak up: tell your doctor, an adult you trust, a counselor, a clergy person, someone. I think the advice from doodlebug about focusing on pain relief first is good.
You are worth fighting for.