just diagnosed and flipping out!! | Arthritis Information

 

Hi, just stumbled onto this website while trying to find out what the heck I have wound up with.  Not liking it so far

 

Hi, welcome to the boards that have helped me so much. I just joined a few weeks ago and I have learned much. My first question to you is do you know you have RA? I started having joint pain in Jan.this year. I just kept "hurting" myself, like when I opened the door my wrist felt like it was dislocating, and my shoulders hurt so bad sometimes it felt like someone hit be with a 2x4..I went to my PCP and she said and I quote" you've had a few more birthdays and gain a little weight, I can hear your joints cracking, try some glucosmine" I tried all the alternative supplements out there for OA. ( I used to have my own health food store so I am a big believer of herbs) Anyway I kept getting worse, and the fatique was overwleming at times. ( I work full time). It was my GYN that finally order a mess of blood test and discovered I had RA. I went to a rheumy in April had a special new type MRI and there was extensive damage in my hands. RA moves FAST for some. I have in almost all my joints. My suggestion is to get online and read as much as you can. We are soooo lucky to be living in an age where we can connect with each other and get so much info. You can email me if you want, I usually can write in the evening, hang in there, you have stumbled into the right place, Rain h2osign38929.6581365741Well I went to my family doc on the 18 and told him about the pain in my hands and feet and that I was sure it was arthritis and what could i do for the pain.  he told me tylenol but that he was going to run a couple of blood test.  They called me on the 21 with a referrel for a rheumy and I saw her on the 25 she did more test and took xrays and i talked to her today and the test came back definite I have it so after crying I logged on.  She started me on naproxen for pain until we knew for sure she said today if the pain gets worse or I feel like I need to call and they would get me in sooner than my next appt on the 8th.  Welcome, glad you found us.  This is definitely a journey I didn't want to do alone and like you I jumped on right away when I was diagnosed in Dec 2005. 

Get ready for a bit of a roller coaster ride.  Getting the meds right takes time and a lot of patience on your part.  There is a lot of experience here to share, though so ask away if you aren't understanding something or you need information.

Some here, are unfortunately not doing exceptionally well, while others, like myself, are blessed with a good response to the medications.  RA is like that...no two people exactly alike, but we have LOTS in common just the same.

Like you I didn't have much swelling either and like Rain, I thought whatever I had was OA or I was just hurting myself or whatever.  When I got the diagnosis of RA, in some ways it was a relief and I remember saying, "OH, SO THAT'S WHAT HAS BEEN GOING ON ALL THIS TIME."  It took several months for me to identify everything that had been RA because I had been minimizing it or calling it something else for a year and a half.

Thank God we live in these times.  At least there is hope.

Take care, Jeanne


The past few days I have started sorting out what maybe could have been ra what little I know about it anyway.  A lot of things are making more sense now.  My biggest question is can you just have ra a little or does it depend on flares and remissions and are some flares big and how fast does a flare progress.  My husband and children are thinking that if this is what I have we caught it early and my symptoms will be mild if much at all.  So when I tell him now that yes I have it what do I tell him about my pain and fatigue now and that they have increased or seems to have in just the past few days.  Does it move that fast or is it in my head.It's not in your head, but your focus is more on the pain and fatique so you are more aware now. Catching it early is a blessing! Many people on the boards suffered for a very long time and some are still suffering. I wish now that I would have started on the MTX in April, but I was so afraid of the side effects ( they all have their scary tales) But I realize that RA is much worse than the side effects of the drugs. You can find members here that have "tried them all" and they can give you some good direction, your Rheumy is your best source though so write everything down! Keep a journal of how you are feeling because it's easy to forget from one day to the next. My fatique was so great when I first started with all of this; I had to go out to my car during my day at work and take a nap! Things do get better, I've already bounced around several drugs trying to find the right "coctail" to end this 8 month flare, I have no idea what remission feels like, but allot of people do. As far as your family goes, you know them best, I will say that RA confusses many people because we look so "normal" we don't really look sick, but our immune system has gotten very confused and decided to kill the good the bad and the ugly.Try and educate yourself so you can help them through this process and major change in your life. Try and find this book (Rheumatiod Arthritis an essential guide for the newly diagnosed by M.E.A. McNeil) A patient-expert walks you through everything you need to learn and do the first year. I read it through my tears, but it really was comforting. I really liked the fact that she said RA will help you get into the best shape of your life, because we have to start taking care of ourselves, which is something mom's have a hard time doing. Keep us posted , take care Rain hi 2angels.

First of all, your doctor will probably put you prednisone soon, and that will give you a lot of relief. Unfortunately, it's not a drug you want to be on for long, but it will make you feel better. Sometimes the first flare is the worst flare. I hope that's the way it is for you. Your rheumy should explain to you what RA is, and what it means for you. Then you'll start out on some form of medicine. You will probably be on some med or other for the rest of your life, or until medical science figures out what is wrong with us and finds a way to fix it.

Your husband is going to have to understand that life has changed. If he doesn't get that, have him talk with your rheumy and read the posts on these boards. You may be lucky and  have a medically induced remission, but even so, you'll probably be on the medicines for the rest of your life. You will tire easily. You will be susceptible to infections and other auto-immune illnesses. That's the reality.

And it sounds pretty grim, doesn't it? But hey, some of us travel around the world. Some of us play musical instruments. Quite a number still work. We have kids. Some people have kids while we have RA. Life doesn't stop. It just changes.

Sorry about your diagnosis. You're in a scary time right now and some of the things you read will terrify you. RA is different for everyone. When I was diagnosed I didn't accept it, I got depressed, I felt sorry for myself and I tried to talk everyone out of it. It's been about 7 months now and I'm finally accepting that it's here to stay. So, I'm in the pissed off stage of grief now. : )

You will get through it, but the diagnosis is a loss, so be gentle with yourself!

Nancy

Thanks for the information it does make me feel like I might be able to deal with this.  My rhuemy hasn't started me on prednisone but I have been on that before for bronchitis and it sucks.  I am very active we live on a horse ranch I don't work outside the home but I am very active here.  I love to ride horses and if my pain gets much worse I am not sure I will be able to handle riding.  I am just going through the poor poor pitiful me stage I guess.  I am a bit angry and very sad I am already on wellbutrin so at least i was  ahead of the depression game.I saw one of my dearest friends last week, he and I have been friends for over 40 years. He has been in pain most of his life, we all thought that it was from playing rugby, sky diving, riding motorcross and variety of sports we all took part in, he found out 5 years ago he had RA. He is still rding his MOTORCYCLE and said RA was the best thing to happen to him, because once he started on the right treatment he felt great! Horses are a bit milder than a Motorcycle, anything is possible.

Well here is to hoping for the right meds and a nice long trail ride.

I feel like my joints are growing by the minute I think the swelling may have started but again I am afraid I may be imagining how quickly it is progressing I tend to panic and think the worst sometimes. Can it get considerbly worse in a few days?

Welcome!!   You are in the right place to commiserate and encourage!!  This is a difficult time, just being diagnosed, if you had no clue about it before hand.   I was fortunate, and did tons of research and even started participating in this forum before I was diagnosed.   It will change your life.  You will learn to accomadate for the things that effect you the most.  Ask questions of your rhuemy, the forum and read, read, read!! 

Each individual is different as far as progression and medicine reaction.  It's soooooooo individualized.  This disease is not an, "oh, ok, here's a pill and you'll be better in 10 days."   Be patient, be aggresive and above all, try to be as positive as possible.

The Naproxen is an anti-inflammatory for the swelling, wether visible or not.   Your dr. might prescribe Prednisone for almost immediate relief for the time being. 

I am on Ibuprofen, 800mg 3x's daily, and Plaquenil, 200mg 2x's daily.  Plaquenil is one of the first drugs they try because of medical protocol and insurance.  My dr and I agreed not to try Prednisone because I don't have horrific swelling and it's so damn hard to get off of and the weight gain, I don't need that!!!   I am so glad I stumbled in here.  I talked to my husband tonight and both girls (16 &13) earlier today and tried to explain what was happening.  I told them they might have to do a lot more to help me with the every day stuff and they seemed to understand but it is early.  My husband was actually great he told me he would help me through all of it and not to worry there is nothing we can do to change it just take it and deal with it as it happens.  That and this forum has helped me feel so much better.  I thank each of you who answered and I am sure I will have many questions in the future.

I just have stumbled on remission for the first time in all my life with this RA but then ran into a few probs with my eyes and must go back in for yet another mamogram....for me it is always something.....luck of the genetic draw I guess.

Best thing to do is to become as educated on all that surrounds RA , learn the procedures, research the drugs and above all learn about the blood work. If nothing else it keeps you busy and above all it educates you so that the unknown is not nearly as scary.

There is an abundance of information on this site, we are so fortunate to have such a resource at our fingertips. When I was initially dx I did not know about this site nor if it actually existed at the time. Read and read, it helps, it comforts it informs. It sounds as though you have a very supportive husband and thatyour children will be very supportive as well, you are one of the lucky ones that is for sure. My children grew up with this darned disease so there life was a tad bit different.

You are allowed to cry and be angry, it happens to all of us. You can even vent here which is a true godsend cause nobody knows this disease as well as those here aside from our RD's, but then again, they have no idea of how difficult it is to live with this disease and how it shapes our lives.

I wish you the best on this journey you have been thrown onto with  this disease. Ask all the questions you want, typically someone here has been through something similar.

jode

 

Welcome,  I just wanted to tell you I am sorry that RA brought you here and hope that you stay positive.  RA effects everyone differently and you never know how bad it is going to get for you or the possibility of getting better. 

You have a right to grieve.  I have been diagnosed for over a year and I still find myself grieving BUT you do get used to the idea.  Sometimes it takes lifestyle changes which is very very hard but change can open up new opportunities you would never have tried.  My whole life has changed since my onset almost two years ago.  I was a ranger all my life and I cannot return to work but I am finally moving on and finding new opportunities.  That is only what happened to me, like I said it is different for everyone.  Let yourself grieve, I think you need to and come here for support and info.  The more informed you are the better able you will be to manage your ra.

WELCOME.

You have definitely come to the right place.  My wife was diagnosed a few years ago at 33.  We have a 2 year old and it can be hard sometimes.  I came to this forum to get advice and was made immediately to feel like I had a new world of friends.  Hi and welcome. I think you are doing well to have a quick diagnosis and an understanding family...plus you found us! It takes a while to adjust to the fact that this is life as you now know it. Not just a temporary condition. I dont know that I have fully adjusted. But you just have to take it one day at a time...and things work themselves out.

I'm on my second marriage. My first one is a long story that I won't go into. My first husband wasn't a jerk.....he just didn't play much of a roll in my illness.

When I started dating my second husband I was hesitant to get involved due to my illness. It complicates everything; especially relationships. When I told him of my RA he took it upon himself to research the situation and educate himself on what I was going through. I can't tell you how much his support has meant to me. He knows what RA is, what it can do and how best for me to manage it. He's the first one to tell me to slow down and get some rest. He's the first one to notice I'm not well......and he's the first one to comfort me when I get scared. He knows my meds and worries about interactions when he sees me taking something I shouldn't. He's even spent the last 20 months giving me my Humira injections.

Having a partner in life to share this with makes all the difference in the world. I hope your husband will educate himself and work hard to understand your new life with RA.

 

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