Hello. I am new to this message board and this is my first post with respect to my situation. I am so grateful to have come across such a great resource. I was not sure if this is the appropriate place to post this message, so please advise if this should be posted elsewhere. My apologies in advance for such a long post and thank you for listening.
I am currently working as a full-time paralegal during the day and am one year from completing law school in the evening. I am 25 years old and was recently diagnosed with RA several months ago, after experiencing severe pain, numbness and burning in both hands. Within a month the pain and burning progressed to my knees, ankles, back, hips, elbows and shoulders. I visited my primary physician on several occasions, a neurologist and finally a rheumatologist confirmed my diagnosis. Finally, someone was able to confirm the inflammation was not merely in my imagination.
Regrettably, I am somewhat familiar with this condition as my mother also suffers from RA with juvenile onset and Sjogren’s. She was diagnosed in her late thirties, and went without relief for years as they could not locate a cause. I have watched her go through the tribulations and was the primary reason why I elected to complete both my undergraduate and graudate coursework in the same city where she lives. I wanted to be near her if she needed assistance and to be there for her good days. Fortunately, she has managed to continue her life with only one spinal fusion surgery. She is a real trooper and has always maintained a positive attitude.
I, however, am really struggling with this concept. I find myself waking up to stiffness every morning and my hands burn terribly when I am at work typing. Then there is the physical pain in all of my joints. It never seems to cease. And the fatigue! I don’t know what is worse the pain or the dreadful fatigue!! My energy level has plummeted. I find myself becoming so tired, my speech slurs. My co-workers and friends have suggested to me my face is unusually pale white and my eyes appear dark and sunken. Other than these few physical characteristics, I feel as if these symptoms are invisible to others making it complicated for them to understand.
I am finding it very difficult to see the positive in this situation. I am not expecting miracles and acknowledge there will be some potential future limitations, but when will this become manageable? I began administering the Enbrel injections last week. I was not very excited about doing so, but I really want to feel better. I am also taking Plaquenil, Daypro, Nexium, Darvocet, Amitiza and Fortical Spray. (Apparently in the midst of my diagnosis the rheumatologist located osteopenia in my hip – Is this normal for a person 25 years of age?). I was initially taking Asulfidine, however it made me so nauseated and physically ill I missed an entire week of work.
I am hoping things will eventually improve. I feel as if someone has literally pulled the rug out from under me and I am attempting to regain my position. And this is not exactly the kind of mother/daughter experience I had envisioned! I feel as though I am asking her too many questions, but I have a thirst for knowledge and so I have many unanswered questions. She has expressed a feeling of guilt and is upset I have to go through any of it. In turn this makes me feel even worse for even discussing the matter! I was supposed to be supporting her, not the reverse situation!
I am also very concerned about how this will affect me going forward with respect to my performance at school and work. I have only one year of law school left, and do not want to quit working because of my health insurance benefit. I just hope I will have the focus and stamina to continue working all day and attending law school in the evenings. I am determined to feel better soon and bounce back.
Certainly, things become easier with time?
You have come to the right place. Welcome. And I am so sorry to hear of your recent diagnosis. The shock of, and struggle with, the diagnosis are very common to many of us. I know the pain and fear you are experiencing. Thankfully, today I experience very little pain, stiffness, fatigue, depression, etc. I have never been on Enbrel, so I can't help you with that.
For me, things did get better and become easier. I am functioning like a normal person again and feel 90% better than I did at diagnosis.
I hope you feel better soon. Hugs, Karin
Yes, things do become easier -- if only learning how to cope makes it so. You'll find as you go along that you'll have good days and bad days and no way to plan for either eventuality. The best thing to do: take each day as it comes and don't do a lot of advance planning.
Most people feel as you do that fatigue is the absolute stinking worst part of these diseases. Something you can do to help: get in a water exercise class designed for people with arthritis. It really helps the state of mind and your mental health.
Hopefully, your rheumatologist, given a little time, will come up with a treatment protocol to help you do better physically.
Keep in touch
Janis
Penguin
I am so sorry that you too have been diagnosed with RA, it is a terrible shock to begin with.It sounds like your doctor has started you on a good assortment of meds, the enbrel will take a while to take effect so stay positive about that as so many people do have a good outcome with it. I know you didnt envisaliage a mother/daughter relationship with RA as a factor but look at it as a great bond between you and your mum, she will be able to gve you the knowledge you need and the understanding when you feel bad.
I hope the meds kick in soon, take care
Lisa
Penguin, welcome. I was diagnosed a little more than a year ago. There is light at the end of the tunnel, but the tunnel is pretty long. You will have good days and bad. That's what I tell people who ask me how I'm doing "I have good days and bad". It's important to not overdo your activities on your good days. On the bad days, you feel like you just have to rest - do it. Listen to your body. Your meds are pretty strong - that's good. This disease needs a hardline of drugs. I hope we see you around here a lot. Take care. You will find tons of knowledge, info and suggestions here and most of all, you'll find people like you here.Welcome, Penguin,Dear Penguin, WElCOME! Please feel free to 'vent' ask any questiions you want and any time. We are here 24/7 and understand what you are going through. I understand your mother's sadness, guilt from giving you this nasty stuff, but she couldn't help it you inherit the good with the bad from your family.
Oh I agree with Thinkthinn, that you should be on prednisone until the Enbrel works, and we all that methotrexate, as it is suppose to help make the 'super' drugs work better.
It sounds like you are in too much pain to wait another minute to call you doctor (talk to those nurses/ receptionists/etc!), and ask if Prednisone for a short period of time would work for you. You might be able to get off of some of the other 'pain meds' if you get on it, and you will feel better immediately. (Caution: please plan to get back off of it, that's the only problem, we can't stay on it long.....the time varies as I was on it for 3 months and was told 'get off of it' , I just made it last week. But, it saved my life!! Good luck, Lynda
Penguin, welcome! There are a lot of wonderful and caring people here. You've been given great advice. As already stated, enjoy your good days and rest if you can on your bad days - know that they will pass. It can take a few weeks for embrel to kick in, but until then maybe a short burst of prednisone will help? If things get too intolerable, don't hesitate to call your Rheumy's office.
It sounds like you are a very driven person. Congratulations on your achievements so far. It couldn't have been easy for you. Best wishes on your last year and with taking the Bar!
Welcome to the board. I am sorry you are going thru so much right now.
I am glad that they are treating you hard and fast tho. That is really the key to getting this under control. Many people here still work and do very well on the meds. Give the enbrel time to kick in. Keep working towards your law goal.
You will find many caring and wonderful people here with a lot of great information to help you out.
Hi...I am also new to RA, having been diagnosed just a few months ago. For me it all started when my wrist swelled up one day. The pain was horrific, but I guess everyone on these boards knows all about that. From my wrists it moved to my shoulders, knees, feet, elbows, hips, pretty much every joint. Except my jaw. It hasn't affected my jaw. Anyway, this went on four months plus, with many days being unable to get up out of my chair. I even slept in my chair because to lay down was far too painful. My doctor said that in all his years as a Rheumatologist he has never seen RA so aggressive and so painful. I went from running an hour every day and weight training 3 times a week and planning to compete in my first marathon to sitting in a chair.
It took quite a while to diagnose, but when my Dr finally called it RA and started treating it that way, I started on MTX. Then I waited and hoped it would make me normal again. It helped a bit, but it wasn't till I started Enbrel along with it that my life got back on track. I'm not as good as I used to be, but I still run on an eliptical almost everyday, and I'm back to weight training too. I do believe that the marathon is out of the pic though.
I have some pain everyday. My shoulders always hurt, as do my knees and my hands. It's doable though, and vicodan makes it manageable. I take one or sometimes two a day. Haven't had a flare since I started the enbrel, but is it normal to always have pain even though you aren't having a flare?
Anyway, I'm really happy to have stumbled on this web site. From the posts I've read so far, everyone seems so helpful and friendly. Thanks, I really appreciate that.
Linda
Welcome Penguin and Linda,Hey Penguin and Linda~
I'm 22 and got diagnosed about a year ago. I promise, it does get better! Or at least, as one person already said, you become better able to cope. I'm on Plaquenil, prednisone and enbrel at the moment, and will be switching the prednisone for methotrexate in the fall (and yes, I'm scared) It did take a while for these medications to kick in, so hang in there. That seems to be one of the common encouragements with this disease, to hang in there. Enbrel has worked wonders for me, but it did take almost a month to fully kick in.
Y'all, we can have full and productive and happy lives with this disease, even if those lives aren't necessarily what we pictured. For me, it has taken a lot of redefining of mental definitions of being strong and being useful. I can't help carry heavy furniture like I used to, but I can do things around the house and I can do less strenuous things to help others. I can swim, ride on the back of my fiancee's motorcycle, go for hikes (slowly lol) and I can also still go sailing! I'm starting grad school in the fall, and getting married next May. Life is still going to be great!
I've found it most important to keep an optimistic outlook. That's helped by the fact that I'm naturally stubborn as hell and don't like the word "can't". At the same time, it is important to determine and respect our new boundaries...as I've found out the hard way several times lol. This disease does not mean we have to give up our dreams. Sometimes we just have to alter them a bit.
This forum is an awesome source of support, and information. Vent whenever you want guys...the rest of us do too, and it helps to talk with others who understand where we are!
Take care!
Thanks to all for the encouragement. What I see here is alot of strong people who are making the best of this RA challenge. It's good for me to see you who are futher down the road with this, although my doc told me that RA doesn't affect everyone the same way. Still, I am planning on a continued happy and active life, and whatever God has in store for me, well, I guess like everybody else, I'll just have to wait and see. I do have a question though.....since I am not having a flare, but still have pain in my joints, does this mean that their is permanent damage in those painful areas? Can the RA still be progressing even if you aren't in the midst of a flare? I thought it was either flare or remission, one or the other.
Linda
Linda: No, it is not as black and white as either flare or remission. Honestly, I don't really understand what a flare is because I started with some foot pain, and within one month I could barely walk, drive, turn a door knob, etc. It just got bad really fast. And stayed bad (no good days) for about 4 months. Then I started treatment and I just progressively got better and better. It was never a good day one day, then a bad day the next for me-- but I know some people do experience that. For me it was just from bad to terrible, then just slowly better and better. I am not 100%, yet, but I am about 90% back to normal (a couple stiff fingers, that are mildly swollen). I have been doing quite well for about 11 months. So, I do not think your pain necessarily means joint damage-- maybe just lesser disease activity.Wow, Karen. Your experience sounds very much like mine in the way it came on so fast and strong, except mine started in my wrists. It was even 4 months till it started to ease up. That was because of the Enbrel though. I'm far better than I was, no comparison really. Still, my shoulders, knees and fingers are sore everyday, and just in the last few days my hips have been bothering me again. And you know what's kind of ridiculous? I keep thinking that maybe I don't really have it, like maybe it's some crazy virus or something and I really don't need to be taking all these shots and pills. I'm always tempted to stop taking them and see what happens. It's only the idea of maybe having to go through another day with that kind of pain that keeps me taking them.
Linda
Thank you to everyone for posting and being so supportive. It is easy to become consumed by the negative impact of the situation. During this time you read anything you can get your hands on, do your own research and follow your doctor's instruction... but it is an entirely different perspective you gain from other's experiences.
It is very comforting to know there are those who truly understand what you are going through and are willing to listen. It is equally comforting to read your messages and know you all have continued to lead active lifestyles despite the low points in life. Your comments are sincerely appreciated.