Feeling overwhelmed and scared is normal when you first receive a diagnosis of a chronic illness like RA. check out our area about the basics of RA and the section for the newly diagnosed, which has posts on the various aspects of living with RA, including how to relate to friends, family, spouses, work, etc. Printing out some of the material in those sections may be helpful for you and you can pass it on to the people in your life who need more education.
One of the essential aspects of living well with this disease is to reach out to other people who are in the same situation and who know exactly how you feel. We have a wonderfully supportive community here, so ask as many questions as you want.
I have only been diagnosed about 3 weeks ago. Everyone thinks it's fairly minor! For me it's anything but. When I read RA is an auto-immune disease..Yikes! When I read that I would have a shortened life span..OHMG. And yet my husband tends to think Its no big deal! I feel lonely, I feel angry, and I feel that I used to be so independent and proud of being self-sufficient and my fear is that my identity of being "strong" is taken away from me.
I have trouble walking, movable aches and pains, and my friends swing between thinking I'm a hypochondriac and something to be pitied. Neither of which I am!
It has really been a mental blow to get my head around something like that. I know that we can make good progress with diet and medication etc etc.. but ultimately
particularly at this young age
no-one likes the reminder that they are not "Invincible". Hang in there. You are not alone. Keep talking about how you feel and someone in your network
HAS to listen. I will if you will!
Don't worry about what other people think. Most people who aren't educated (everyone else) about it don't and will never understand. To my inlaws I'm just being silly and wasting my husbands hard earned money for a little pain. Because my father also had arthritis to my family I am almost dead, and I should be pitied. So i can't win either way. YOur husband is on your side, so stay strong and everything will work out. My husband is the only one I can rely on and that is all I need.
I was diagnosed yesterday with RA. I know how you are feeling. I kept telling everyone that I was in pain and they either did not believe me or thought I just wanted attention. My husband and mother-in-law believed me but were baffled as to what to do to help. My mother was recently diagnosed also and so her pain and troubles are much worse than mine according to her. Even thought the doctor believes it is mild my hands and wrists tell me otherwise. I have not started a medication yet so I do not know what helps. Stick with it. That is the best advice that my doctor gave me. If you start on a treatment stay with it. My doctor said that as long as you stick to a treatment once you find the right one that the disease will not be likely to progress to a worse condition. I don't know if this helps at all but I hope it does. Don't worry about what other people say. You know your body and what you feel better than anyone else.
I was diagnosed with RA a little over a year ago, with no noticeable joint damage, fortunately. I think I was one of the luckier ones because I was diagnosed in a relatively short period of time. I was put on Celebrex first, then a couple of months later on Plaquenil by my Rheumatologist. The Plaquenil took about 3-4 months to start working. My wrists were the first real pain I had, and for some reason the right one stopped hurting before the left. Now they are both doing pretty good. For a few months, before testing and bloodwork were complete, there was excruciating pain even with everyday tasks, which was rough. I just wanted it to stop, or at least get better. Now I have other areas that hurt, but it is tolerable. It can be tough at times, some people say it'll get better, others just ignore your misery, and talk about their own thats worse.
It is natural to feel this way...even though you have support. I was diagnosed 2 years ago, and many days feel very overwhelmed and often alone. I think it is natural when we look at a life changing event that effects us and our family.
Be kind to yourself. Treat you like you treat others...something that moms tend to NOT do. When you hurt, tell yourself it will be ok and that you will get through it.
One thing I found out, and frankly still struggle with, is that I can't seem to find a happy medium in physical activity. On good days, I am all in. But then it comes back to bite me with feeling extreme fatigue and flu like. I am trying to learn to pace myself, and to not feel guilty on the days that I did not pace correctly.
Keep your humor and love for your family and yourself through your process.
God bless you.
I was diagnosed in May of this year. I had a pretty good idea the rheumy was going to say I had RA. I did a lot of reading in the Internet. I guess I was prepared to hear the worst but I honestly was grateful that I had 64 years of really good health up until that point. The first couple of months were painful but I'm doing very well on the meds and as long as I at least feel this much relief I'll live the rest of my life grateful that it wasn't any worse!! I can always think of someone who has it worse than myself. Oh, and it really helps if you go to Yoga classes and stay active.
Hello Jen its a bummer isn't it. I was not diagnosed until I was 33. In pain for years and nobody guessed what it was. The doctors all told me nothing wrong with me and some told me I am just lazy or all in my mind. For some years my tests were coming back negative too.
It was a relief to finally know what was wrong - diagnosed by a Dr. who'd just come back from UK and he recognised the sysmptoms of my swollen fingers which all the others had missed.
Just try all the drugs etc. with great caution. If one doesn't work the next one might. Just keep going. Try the alternatives too. Many people on this site tell us about.
Pineapple fruit/juice can help me. Tumeric 7.5mg called Nalgesic. Licorice tea in the morning noon and dinner time I've just found helps me.
We are all different even tho we have RA.
Personally I'm praying for gene technology and stem cells.
Hi I have been having RA for nine years and I had the same feelings of uncertainity as you have. But I kept talking and reading and made people hear me. This particular site has given me a lot of support lately. Just to know that there are so many people that share your exact feelings, pain, uncertainity, depression and frustration makes everything much easier.
Take your meds, some take at least two months to show their effects so hold on.
Hi Jen, My name is Angie I am 48 years young, and I live in the UK, I have been living with RA since Nov 2008. Like most people who are newly diagnosed I googled it day after day on the internet, and day after day I was getting more depressed, so in the end I stopped and joined this site. I have been taking 20mg Methotrexate, Naproxen, Tramadol (for pain) folic acid, and iron tablets for about 6 mnths now.... In the beginning I think I went into denial because I was thinking that maybe it was something else that was causing so much pain, or perhaps it will be better as soon as I start taking the tablets. But no, it was only when the RA doc at the hospital sat me down and literally said it in my face "Angela you have RA, its not the way u sit at work, its not just the flu etc etc etc". It was then I came back to planet RA with a big thump lol....Some days I am in agony with pain in every joint imaginable, the next I could run a marathon ???? This disease is so cruel, but saying that, I am learning to live with it now. I push myself to the limit sometimes and then suffer the consequecies after. My family now beleive that it is more than me just moaning and groaning, and that I have got this crappy disease, and most of my friend understand to a certain extent, but you still get the morons who think you are just moaning at a creaky old joint like they have, and to be honest I can`t be arsed anymore to explain what RA is, so I just smile...
I do get depressed sometimes when I can`t do what I used to do especially recently when my best friend got married and I wasn`t able to go to her Hen night as they were trawling around the pubs and unfortunately I can`t walk that far and that fast, but I did manage to got to the Wedding...... so you are not alone in this beleive me! I wish you luck and hope you get some good results from your medication asap, and this web site is always here to help ....GOOD LUCK xxxxx Angie
Hi Jen, I guess no matter what age you are when you are diagnosed it's like getting kicked in the stomach. I am 55 and I was diagnosed 5 years ago. I really didn't know what RA was so I went home and looked it up on the internet. As one person said the more I read the more depressed I got. My RA doctor, who is a sweetheart, started working with me to find a combination of meds that would work. First she put me on methotrexate and Enbril which didn't work. Then she tried leflunomide and Remicade which proved to be my wonder drug! I am not saying that I don't still have pain and flares but I have learned to live the good days to their fullest. Since I've always been very active all my life learning to do things differntly was a challenge.
The only thing that still bothers me is that because I don't look like I have RA some people don't understand it when I am in pain. I was just recently diagnosed with polycondritis, which also is an autoimmune disease. It affects the cartilege in your body. Again something I didn't know about and had to read about to understand it. So far I have been treated with antibiotics and prednisone. Both times I had pain it went away. So now I just take each day as it comes and make the best of the good times.
I was just diagnosed with RA, today. I have been suffering since June 8 with many symptons. I started out with swollen right hand knuckles on index and middlle finger. Then my wrists hurt, ankles swelled, jaw on right side will only open partway, even the balls of my feet are red and swollen now. So now he put me on prednisone, methotrextate, and folic acide. I have not worked for 2 months hopefully I respond well, could take 1-3 months for this to help out. I have a very supportive family and husband. But I would love to stay in touch with others with the same problems.
I was 50 when I was dx'd w/RA 3 years ago. It was hard to accept because I am one of those who would make lists of what I was going to do each day I had off and worked until it was done. I thought I still could and tried but the RA knocked me on my butt. It took a short time to realize that I was going to have to change my thought process and how I did things. I no longer makes lists (except grocery).
I used to walk daily but when the joints in my lower body starting keeping me awake at night, my rheumatologist told me no more walking; he suggested a stationary bike. I had a friend who was getting rid of hers so now I ride that daily. I was trying to do 50-60 minutes a day, but there are days, if I do 30 I am happy with that. To over do it has its drawbacks and it is still trial and error on what I can and can't do.
When first diagnosed, there were family members on my husbands and my side that tended to shut me down or tell me how much pain they were in. I've learned not to discuss this with the ones who do that; it made me feel like shit to be negated like that. So now, I write here, ask questions here, and talk with those I work with who have RA as well. In having a network of people who know what it is like to deal with day to day issues of RA it has helped me to not feel bad about myself. My husband has been supportive and asks each day how I'm doing. He says he can see in my eyes when I am in pain or had a bad night.
I have a quirky system, and the different oral meds prescribed I had reactions to. Then I was put on Humira injections. After 3 injections, my doctor took me off when I had reactions at the injection sites. He started me on the Remicade infusions of which I will have my second this coming Monday. So far, I had one day of relief after the infusion. I can see where the RA has disfigured some of my joints but I will not be embarrassed about them. The doctor is thinking of trying me on another oral med in conjunction with the Remicade when I see him next month. I am not able to take Methotrexate because of nodules they found on my lungs in two lung scans. I do take supplements. If I had not gotten a grant to help with the payment of the drug, I would have foregone the infusions. Even though I have insurance, $600 a treatment after the insurance pays is still hard to fit in a tight budget.
Overall, it has been a relearning process. There are things I've given up but in their place, I have other things. I read more as I did when I was a child. I take time to just sit on my porch swing and relax. I watch the squirrels in my back yard and this month put up a squirrel feeder. I have my dogs to keep me company outside and my cats when I am indoors. I feel I have made big adjustments in the acceptance of this disease and learning to live with it.
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