Currently, I have very little pain and don't have the symptoms described by alot of people on this site, but the chances of me coming down with RA is probable because of a positive anti-ccp and rheumatoid factor. I am confused by such statements as a normal life, but having the pain that is described by many isnt "normal." For example, here are some positive blurbs from the internet:
* There is no cure yet for rheumatoid arthritis, but there are effective treatments. The right treatment can slow down the progression of rheumatoid arthritis, make it easier to live with, and address any joint problems that develop.
* Although RA can have serious effects on a person's life, current treatments allow most people with the disease to lead active and productive lives. Research has given us a new understanding of RA, increasing the likelihood that we will ultimately find ways to cure this disease.
* The results from RA research are having an impact today, enabling people with RA to remain actively involved in family and work life far longer than was possible 20 years ago. There is every reason to believe that research advances will continue to improve the quality of life for RA patients.
* Strategies for managing RA help many patients lead active lives and minimize pain. Continuing research into RA means there is hope for still more effective medications and other treatment strategies.
* Therapy for patients with RA has improved dramatically over the past 25 years. Current treatments offer most patients good to excellent relief of symptoms and the ability to continue to function at or near normal levels.
* RA has been a primary focus of rheumatologic research and the treatments now available have dramatically improved outcomes for patients. Joint pain and swelling can usually be well controlled and joint damage can be minimized by early treatment.
* "Rheumatoid arthritis is now an illness for which newer treatments offer the real likelihood of patients being able to pursue a lifestyle without the limitations imposed by joint pain and deformity,"
With all of the above positive post, it seems that RA isn't that bad of a disease and that disabilities are a thing of the past. However, these are the negative post:
* While rheumatoid arthritis is a chronic illness, meaning it can last for years, patients may experience long periods without symptoms. Typically, however, rheumatoid arthritis is a progressive illness that has the potential to cause joint destruction and functional disability.
* In some patients with rheumatoid arthritis, chronic inflammation leads to the destruction of the cartilage, bone and ligaments causing deformity of the joints. Damage to the joints can occur early in the disease and be progressive.
* Rheumatoid arthritis is an inflammatory disease that causes pain, swelling, stiffness, and loss of function in the joints.
There are other blurbs that speak of extraordinary pain, disability, the inability to care for one's self, and the inability to work. I have read some post from this message board, and some people speak of terrible experiences. With treatment, will I be able to work, wake up with minor pains, play sports, go for a walk in the park, laugh, and enjoy life. This is what "normal" and "productive" means to me. Is this what I can expect, or even with treatment, will I have constant pain, no longer participate in sports, unable to play with my kids in the park, laugh, and/or enjoy life? I know a lot of people "vent" their frustrations and speak of certain conditions in an overexaggerated state. Is that what I am reading from certain post, or is my life going to take a downward spiral of constant pain and depression.
I'm sorry to sound so negative, but I can't take no more of all the confusion that surrounds this disease.
Please Help!!!
Okay, so you want it straight up? The truth is there is no way to know just how RA will affect you or any of the rest of us. It is different for everyone. My mother was diagnosed at age 9 and still to this day takes nothing more than Anacin. She is 63 years old, works a full time job, stays busy with her ageing parents and the 5 grandkids that live close by. She gets out in the yard and trims shrubs and help my dad cut down trees out on their property. She takes care of the horse, does housework, volunteers for church.....you get the idea? Me, I was just diagnosed in February this year and have made my way through alot of different meds and I am still waiting for something to work. I have a much faster progression to my RA. That could mean that I am just around the corner from finding the right thing for me, or that I am gonna keep going down hill.
You cant predict the exact course of many diseases. That is just part of it. You have to take it one step at a time and wait and see what happens.
I know that is not what you want to hear. We all would like to have concrete answers, but that is just not the nature of the beast. You are going to have to learn to play the waiting game like all the rest of us. Accepting the unknown is one of the biggest hurdles of this disease.
You can learn and read so that you will know what questions to ask your doctor...but no one can tell you how bad your RA will get or if the medications will work for you.
Well I think it depends on how agressive the disease is. That how they determine how to treat a patient. At least that what my doctor told me. They do test like blood work, x-rays which only show deformation, and MRI's that show early bone erosion. I would try to push for mri they are better than x-rays. No one knows if the meds will work for you all they can do is try. I think it also depends on what joints are effected. When my knee hurts i hobble around and have to eventually give into the pain. I think when your flaring in multiple joints it is extremely hard to do any thing. The best way to describe it is I feel like I got hit by a bus. Good Luck
What you want us to give you isn't possible because each person's path with this illness varies. What the positive blurbs are referring to is based on the comparison of what RA once was. While many improvements and treatments have been developed, there are no guarantees that you will respond favorably to this one or that one. If you read through some of these posts, you will see that some people get great relief from Enbrel and so don't for example.
It is a discouraging and illusive disease. One day, you will feel like your old self and the next you won't recognize the body you live in. But even though it seems hopeless, and believe me, right now I feel that way myself. Tonight my pain is at the top of scale, I am having a terrible time making it through work and I do feel isolated for others.
I know you are trying to get a handle on this disease and how it will affect you and your family. But there are no easy answers. It is hard to stay well. But you must keep trying.
I went through what you are when I was going through diagnosis and I was scared to death. My symptoms were dramatic from the first. But the doctors worked out this problem and that one and many of the things I initially suffered with are now under control. I do take a lot o medicines and I must spend a lot of energy in staying functional. Medical needs are now a priority and I see doctors far more than I want to.
But this is your option. You can try to ignore it. It isn't going away. You can fall victim to the depression that wants to swallow you whole. It is a chronic illness that at present has no cure. It is a painful disease that can progress to destruction and disability. Those are the facts.
You can face those facts and you can fight. And, every time you fight, you are not fighting only for yourself, but for your family. Whether you will see the bad side of this disease or only have a mild case of it, time is the only thing that is going to answer that. But what your children see you do and how you face this will affect their lives. My children have kept me going through the worst times. I have not given up because if I gave up, what would happen to them. They are looking to you to learn about strength in life.
This is the time of testing for your character and strength as a person. Your children are going to see that strength and they will embrace into their characters. This is what I have seen my children do. No, they have not had the best things in life. But they know they have had the best love that I can give them. I believe they value that more than anything else.
You don't stop being a father or husband now that you have this disease. You are a father and a husband who has a disease. Your identity is not this disease. It is something that has happened to you. I know it is scary and the information out there is confusing.
I can't find that answer myself. How crippled will I end up being? I don't know. But I am not as crippled as I would have been if I hadn't been fighting it every single day. You fight when you go to the doctors, you try the treatments, you get support from others, you exercise. You fight everything you drag yourself out of bed.
It's not pretty, the facts. The commercials for Remicade and Enbrel sound like magic treatments that will let you do everything you did before. And, for some, I think that is true. But it isn't for everyone.
Your life is not over. It has just changed. And, you will learn how to cope with it. Even if it is the worse of possibilities, the human soul cannot be contained by this illness. Many, many people prove that every day.
This day, I have been so tired and discouraged myself. But when I read your post, I just want to reach out and reassure you that quality of life is what make out of the situation.
When I got first got ill, people treated me like I didn't have any worth any more, that I was disposable. But then, I learned how important I was to certain people. One was my grandmother, I learned how much she needed someone to listen to her and treat her with respect. My niece needed love and affection. My sister-in-law needed guidance. My children needed their mother. I found myself in all that swirl of illness and loss.
Now, I know my life has meaning and that I can spend it always bringing something to others. Look for that in your life. What do you have to give?
I got to where I couldn't walk. I spent months in physical therapy, added the knee braces and walked with a cane. I dumped the cane over a year ago. I fell in love. It didn't work out. But I let myself live.
That's all you have to do is let yourself live!
I am very rare from what I understand, so the way my body is isn't normal.
I have one of the worst cases, without medication I am completely bed ridden.
In order to get around I need a full walker to enter another room and once there i have to sit down. Walking to the car from the house was a very hard event, even eating with a fork or spoon was extremely painful.
With medication, I can't work outside the home as I am not close enough for that, but luckily my husband can support our income. But, for a life as a "housewife" I do ok. I can cook some meals most of the week if needed, I can do some laundry (folding needs help), I can pick up the room etc.
But, I can't drive as my legs won't let me, I can't walk for too long without support either. I have horrible pain if I don't take my medications. I have days where i can't open jars or water bottles, where I can't open a box of crackers or even a bag of grated cheese.
Depending on what you need to be able to do with RA, will depend on how good you are doing. I am doing quite well for what my daily life requires. But for a working person, especially one who lives alone, I would be very very very far from living a normal life.
I do have a serious case, but most aren't half as bad. It also depends on how you can handle the pain you will have daily (if you have any). Some have little pain, but to them it is a 10 on a scale of 1-10 while many have hard pain and they call it a 3 or 4 cuz they can do quite well with it.
From what I understand, most people can do right on the proper meds, some meds work better for others than other meds can. Trial and error seems to occur during drug use to find the right one.
One thing that is for sure, once it is here, get treatment right away, especially if you are young. Long term of RA can hurt your knees etc. where you have the inflammation and can cause joints to dwiddle away. The quicker the treatment the quicker you can get a handle on your body and what it will be like when you reach retirement.
I wish you well.
One thing about RA, it isn't at all predictable, so I am not sure any of us can give you one concrete answer. All we can do is share our experience. And besides the variability among people with RA, there is the variability within the person who has it! Just when you think you have it figured out, it changes. Or it seems like that anyway.Hi Thomas. I certainly understand where you are coming from. The unknown is the hardest part of this. I'll share a conversation I had with my hubby this weekend:
I was hurting more than usual the last few days, and as I have told you before I am still waiting on some blood work to come back (will be today or tomorrow). Anyway, I got kind of weepy and stressed about this. I was kind of upset that he didn't seem worried. (He is definitely the strong, silent type anyway). He just told me, "Stacy, I don't worry about things I have no control over. I only worry about decision making -- that is, 'is there something different we should be doing?''" He said that if I do have RA, it is something we will face together and take each stage as it comes.
I understand your situation is different, being a man, and worrying how you will provide for your family. My advice would be to focus on the things that you have control over for now. Getting your insurance policies, possible disability policies, etc. in order. Research your rights under the Americans with Disabilities Act just in case you eventually need some special accomodations once you start teaching. You are obviously already doing a great job researching the disease and treatment options including research advancements. That is smart, so if you do eventually need to start treatment you will be able to make the decision together with your rheumy.
As for now, though. You said that you are not in very much pain. So, go to the park with your kids. Play sports. Dance with your wife. Don't let your worries steal your happiness. ( And I will try to follow my own advice also )
Best to you,
Stacy
It's varies from person to person, from day to day, from drug to drug. There are no simple answers, but the more you learn to take care of yourself and be proactive about what helps you get through the day on a bad day, the better off you are.I think people who are not hugely effected by ra probably do not spend the time on the message boards like we do. A lot of us here are here for support. I have heard of "mild ra" where a person just has a mild flare once in a great while, I have heard of remission, where the disease can go away for years, I have heard of people who go back to totally normal lives because of the drugs. If I were you, I would plan on being one of those people. It sounds like you could be. My ra came on fast and hard and my life changed from day one. Obviously yours hasn't and I would take that as a great sign. So - enjoy life to the fullest and don't worry about ra. Just do your regular doctor checkups and believe if ra ever gets ugly in your life - you will know it and there are plenty of treatments out there. I am much better but it took over a year to get my ra under control. To Good Health
PS Currently I am doing water aerobics almost everyday. It might be a good idea to take up a water exercise. Everything I have read says it is the best thing you can do for your joints and I feel amazingly better.
There's a lot of long responses here and I don't have time to read them all so many might have the same things as me to say.
It's very unpredictable. All I can really tell you is what's happen with me. 12 years ago I was dx'ed at 22. Today I lead a very "normal, happy life". I take medication to control my RA and without it I can not function normally. It's a fact of life that I have to have my medication or I fairly quickly turn into something that can only be described as a statue.
Attitude is very improtant to anyone with RA or any chronic illness. You can't sit around the house all day with the woe is me attitude and think "I'm going to be crippled in 5 years" "I feel horrible" "My life is over" "I'm hurting, I'm hurting. I'm hurting" If you do....all those things shall come to pass. That's not to say that "It's all in our heads" but what we tend to think about all day long tends to come true. That's true in life for anyone; even those that do not have a chronic illness.
My best advise for you is to start from day one with a can do attitude. No matter what life brings your way be determined to over come it...or at the very least make the most of a difficult situation. No one can predict the future; especially not those with RA. You do have every opprotunity to lead a happy, productive life not matter what comes your way though.
Try not to worry so much about the future.....and worry about today.
ra is just like us...different from person to person. The only thing we can do is tell you how it has affected us. I was dx almost a year ago and my ra is pretty aggressive. I can no longer work and am going through the hassle of ssdi. But, I don't focus ont hat, you can't, it'll bring you down. Focus on things you can do. Be positive and be patient. I am currently on my tenth med, trying to find one that works. My current ra cocktail is arava, nortriptaline, celebrex and enbrel.
I have severe stiffness in every joint, somedays it seems as if even my hair hurts! But with a good attitude and support system you can getr through it. Several of my fingers are deformed and that happened in a short period of time but most days they still function normally.
Get a good doctor you trust, have your support group, educate the people around you!, be patient and keep a positive outlook. Take things one day at a time.
Best of luck to you