Howdy everyone...I have some questions regarding RA and I will just post them as a list form. Please feel free to answer what u feel like. Any information would help:
* When everyone speak of pain, how bad is it and does it only hurt with certain movements?
* Is the statistical data of 50% of people not being able to work after ten years accurate, or is that based off of old data before the arrival of biologics?
* Are you always in pain, or is it just some days during the week?
* Can people with RA work, play with their children, exercise, and lead a normal life?
* Is RA more painful than OA?
* Overall, are most of the medicine tolerated well, and what is the worst side effects?
I know these are a lot of questions, but I have never met a person with RA, and now I may end of being a victim. I am married, have two daughters, and work. I am 30 years old and dread some of the horror stories that I have heard. Any information would immensely help.
Thanks So Much,
Thomas
First, pain. It's like being on the ocean, full of ups and downs and very variable per person. If your joints become inflamed they hurt. That happens with RA. If you joints become damaged, they hurt. That can happen with both RA and OA. If you have Fibromylagia, then its mostly your muscles. Pretty much all of it makes you fatigued.
You can have one day and nothing hurts. Then, you can have another and barely move. Repetive tasks are the worse. Vary what you do. Learn Range of Motion exercises. If you can get to a gym or a swimming pool on a regular basis, you are going to do much, much better. The more you move your joints and muscles, the better.
The statistics are changing. It's best to look them up on the Internet as they are changing pretty quickly. The biologics have been a wonderful breakthrough. They provide a lot of hope because they have the potential to stop the detoriation. This is a miracle.
Almost everyone here does work or at least worked a long time before they went on disability. This is partly because disability is hard to get. You don't want to go that route unless you have no choice. You go through hell to get it and you get very little money from it. It is better to adjust how you work or what you do.
But you can work with RA. But you might not be the race horse you once were. And, that can be hard to take. It is one of the saddest things that we are hit with this in the prime of our careers. But you can adjust and still have a rewarding work life.
Yes, you can play with your children. Children can be the most accepting and the most helpful. They love you so unconditonally. Watching them move will remind you of what your body should be able to do. I have found that my relationship with my kids has deepened.
Again, exercise. But you will find that you must build up to things in small steps, otherwise you can hurt yourself. Take baby steps even if it seems ridiculous. Walking and swimming are already considered great activities. But I like working with weights and machines. You can still be an athelete. You just want to protect any joints that are giving you problems. But even my damaged joints need ROM exercises.
RA is systemic, so it hits your entire body with pain. That's hard. OA hits a particular joint. I can't say that one is more painful than the other. OA seems easier to get under control because you can brace it, use a cane or have surgery. Some things with RA, you just have to learn to live with the pain. But there are many ways to do this.
Everything has side effects. Prednisone is the worse and one of the most important ones to keep inflammation down. If you need, it is a life saver. But you have to be cautious because the side effects are numerous. You have to follow your doctor's guidance on that.
It seems to me that everyone has such different reactions to their meds. You are not going to know until they try things with you. Hopefully, since your case is mild, you'll never experience most of these problems. But the doctor put it to me this way, it's your life or take the medicines.
Don't think as yourself as a victim. You are a warrior fighting an invader. That invader is an overactive immune system. There are many tools and weapons to use against it. Learn them well and you can survive this and live a long time, enjoying both work and family.
This doesn't mean you will be disabled. Some people just have a one time episode and that's it. Some do make it into remission. And, some of us struggle.
But you get up every day and keep going. Because that is what success in life really is. You can fall, you can be crushed. But if you keep getting up, you cannot fail.
Hope this helps.
In this life changing battle everyone has a different path. I did notDeanna, thank you so much for your reply. The information you gave me helped me and my family. My wife and I are very concerned about the possible diagnosis and prognosis of this disease. My daughters are very young and my wife needs a lot of help with them. Being unable to work or care for my family would utterly destroy what we have created, which is a good family. I just finished college and will start teaching in the fall. I hope the RA doesnt effect this because being a teacher requires a lot of energy: writing, standing, and walking for the majority of the day. Do you think RA, with regards to a moderate case, would prevent someone from being a teacher. I guess a better question would be "could most people on this site could handle the job duties of a teacher given their current status." Any information would help.
Thanks,
Thomas
These are good questions. What I have found out is that on a rating of 1-10 and "most" RA people's 10s are my 4s. I know i have one of the worst cases (as told by my doctors) but I didn't know until know just how different I was. I hope to answer some of your questions to help give you an idea...
*My pain aches when I don't move, but hurts when i do. I have it in my ankles, knees, elbows, wrists, fingers, neck and lowerback. I do get inflammation also around my heart and in my head and face. I am in pain every day of the week but please remember, I am one of the rare people with full blown full body RA that's one of the worst cases, I can't work out of the home at all, can't drive etc. not even a good day.
*It's possible that things have changed, I have learned that many stop working who don't need too just because they can't handle the amount of pain they have while others hold 2 jobs who hurt even more. With the new meds today, many who couldn't work before are able to work fully now. It's been a long while since a good research on that has been done, but you also need to remember that most people are close to retirment when they find out they have this, so they are already at the age of stopping working.
*I was going to have another child but didn't because I know there are days when i can't pick up my child, change a diaper etc. I thank god my kid is now 12 so she doesn't need me to fix her dinner, she can do that herself & dad drives her where she needs to go. I can only exercise a little bit on good days.
*No, RA isn't worse than OA, but it does depend on who has it and how bad they do. My OA hurts horrible, but in a completely different way than inflammation pain does. Both are horrible and even worse when acting up together.
*The biologics that are out now (enbral, remicade etc.) are coming up with cancer side effects that are currently going through more testing, this I feel is the worst. Methotrexate has liver problems that occur in only 4% of the people after long periods of use, but the liver can repair itself when caught in time and the doctors make you get enough blood tests about once every 2 months so you always catch it in time. Plaquanil (i am sure i spelled that wrong) has a vision side effect, but many get the eye sight back to normal when they stop it. Celebrex has been said to have heart problems, but they don't have proof on that as of yet. The pain killers like ultram etc. cause kidney problems or lung problems etc. those I do worry quite a bit about.
I know it is a hard thing to have RA, I got it this past year due to stress from Hurricane Katrina here in Louisiana and that i had uterus polyps, so together i went from running down the street and having fun to completely bed ridden in just 6 months. I am only 33 myself.
Be sure to keep this all in mind, your can change your surroundings to fit your life, your life will "not" be over. If you are an active persion, you won't be much longer "but" you can find things to do that allow wheelchairs if needed etc. go to movies, craft fairs etc. Just remember not to lock the world out of your life and not to lock your family out of your life.
And don't think you are less of a man cuz you are sick. Because that isn't true and your family knows that. The bad thing is that too many sick people don't know that, they think their lives are over, they aren't a great woman or man like they were before, but the truth is that their friends and family will love them just as much no matter what.
I wish you the best of health and minor RA and I hope and pray you find the right medication that works well for you.
There are many "cure" Like meds in testing now that should be out in the next 10 years, so keep that in mind too.
God bless.
I have to say my RA is painful off and on. I have times when I do have pain, but it isn't as severe as some others so I don't really notice it until I stop. Like when I go to sleep at night. Swelling comes and goes, but when it isn't that bad, it doesn't hurt that much. Stiffness in the morning is the worst for me right now. As for living a normal life, yes you can. Or at least I am able to. I work. Monday to Friday from 7:30 am to 3:30pm. After work, when I am not too tired, I either go for a walk or even a jog! The key is to keep active so that the symptoms are not so bad. There are days when you get down about everything. Are in a lot of pain. But I try to keep a good outlook and positive attitude. It isn't easy, and I know there are people out there much worse than me. I think everyone here is so amazing, living in the pain that they do and still have a good outlook on life. This board is what brightens my day when I feel overwhelmed. I just read the posts and know if they can live with this, so can I. I think that Deanna gave some very good responses so I wont repeat, but I will add that with moderate RA you should be able to teach. I am in the moderate range...I went from dx to biologics in 3 1/2 months and am unable to maintain steroid thereapy...and I work as an ER nurse. I have cut back my hours per week and I only work 8 hr shifts instead of 12 now. I am hoping that Enbrel will be my miracle drug and I will be able to work more soon. It has been tough financially. I also have two young kids and I probably push myself more than I should when I am having a good day because I feel the need to make up for the times when I am down to them. Its okay though...it is worth the good times. I am still learning to adjust and so will you and your family, it is just something that you have to do.I am a teacher and have been doing well up until this year. This year I had to rove from classroom to classroom, so it really made my RA flare more than usual and I believe the stress on my body from carrying my materials from room to room also brought on a few other problems. I will be back in my own classroom next year and hopefully that will ease some of the burden on my body. I get really tired at the end of the day, but I don't think that is unusual. Try not to take on to much extra duty assignments in the beginning as you will be overwhelmed with first year teacher stuff, like grading, parent phone calls, paperwork, etc. Teaching is a very rewarding career, yet can be emotional and mentaly draining. What level of students will you be working with? I teach high school math in an inner city school.
If I had to face this disease at your age, with a young family and a new career, I would emphasize planning for the worst and living for the best.
Here's what I mean. Financially, you should have a strong savings plan which I know is hard to do with a young family on a teacher's income. But save what you can. Also, keep debts as low as possible. Buy used often. Own rather than have things on credit. On any major loan, make sure you have disability insurance. That way you won't lose your house or car. If below your means, if possible, and save the rest. What this does for you is take some of the financial stress off of you if you do have to reduce hours or quit working. Since your case is mild, hopefully you have time to put things in place so that this becomes automatic.
As far as teaching, that's what most people recommend I change to. But I am the daughter and granddaughter of teachers. I know it is hard work. But plan how your career needs to go. As Terinki said, watch what duties you take on. But the rewards of interacting with people is what helps a lot of others get up in spite of the pain. Plus, if you find teaching in a classroom too physically demanding, you can try teaching at charter schools, being online or being an adjunct. You don't have to give up teaching, you just may not approach it the same way as you would have before. That might just end up being more rewarding the long run. For one thing, you are now going to value every day that you are able to teach.
And, this disease cannot destroy a strong family. A strong family will join together and support each other. My kids have had to live with less financially and less material goods. But they are good, strong people. They are 22 and 25 now. They look at the hard times and remember that I was always there when they needed me. And, I sense of humor widely applied will get you through many tough situations.
Be honest with your children about how you are feeling at the level that they can understand. It's okay to tell them you are too tired to play with them now or go to this at this moment. Just be sure you do it when you are feeling better. One of the best things I have learned is to become a better listener to my family. A father that listens to his children, one thing that children crave so much, is better than the father who is consumed by his career.
You sound like you have a wonderful family. Nurture that and whatever gets thrown at you, you will be able to handle -- together.
I understand exactly where you are right now. I was diagnosed in 2001 shortly after the birth of my second child. The first year was hell. I am the main income earner in my family and a new born baby was quite the load. My husband worked evenings at the time so it was me and the girls alone in the evening. My extended family is a very strong support system and if they knew it was a bad day they would call or stop in to help out. The worst part was within 2 years of my diagnosis my husband was also diagnosed with ra. We have to be very supportive and understanding of each other. A good sence of humor is an absolute must - you really need to be able to laugh at yourselves. Case in point one night after the kids were in bed we decided we wanted ice cream, unfortunately it was pretty frozen and neither of us could scoop it. Off to the microwave with both of us laughing pretty good.
By the way I am a full time engineer and work 45-50 hours per week, a lot of computer work and field work. Climbing ladders, crawling around basements etc. I am currently in line to take over the company in the next few months. It can be done. I have had to let go of my idea of a clean house. Lived in is the best I get but, something had to give inorder to support my family and still have some energy left to have some fun.
The kids can be your greatest support system. The are extremely flexible. Both our children know when it is a bad day without us saying a word. my youngest will even come out to the living room with a warm heat pack and a book."mommy I know you hurt and can't play ball today, could you read me a story instead."
I wish you the best in your journey - just remember the first year is always the worst. Things are defienetaly better in my home no that we have made a few adjustments.
Susan
I forgot to mention, i was diagnosed this last year, but had moderate RA my whole life (misdiagnosed as a child many times so i quit going to doctors until age 33).
Anyway, I had bad RA in feet, knees and lower back for years. I worked a full time job without meds until the pain was extremely bad then i took a ton of ibuprofen and i mean up to 9 pills at a time. Bad I know, but didn't know it at the time.
I worked a full pace on your feet restaurant job for years with all the pain.
I believe, especially with meds, you will be able to hold that teaching job. But, beware of being tired. That can get you for early morning jobs.
God bless.