I was finally diagnosed a little over a month and a half ago but it's been months that I first started having some symptoms. Actually going back a little further, I had gone to my GP last December because I was feeling so awful- tired, run down etc- He ran some blood tests and much to my suprise, he informed me that I had a relapse of Mono ( um I didn't even know I had it the first place!) and that I also had EBV and CytoMegalavirus. I was told that there wasn't a cure, that I just had to rest up and it would pass..... Well I had no time to rest up- Back then I was working crazy hours in an Accounting Department so I just dealt with it....Then a few months later, I could no longer tolerate sitting for long periods of time- I would have an uncontrollable urge to stretch my feet and fingers.... This progressed to pain in a few other joints as well as abnormal swelling- for example, my hands looked like man hands because they were just so swollen. I went back to my GP who ran some blood work and besides having low iron stores, low hemoglobin, low hemocrit and elevated ESR, she sent me to a Rheumy doc. He diagnosed me right away- I had the nodules onmy toes and fingers- He started me off with MTX which I got so sick on and he switched me to Arava- It's been 4 weeks and no change- in fact, I think I'm worse.Nothing is helping the pain- i can't even wear my wedding band bc my fingers are so damn swollen. At this point I'm angry with RA because in my opinion, its just wrecking havor....But like so many others, I don't have a choice to let this slow me down... too many people depend on me......
Dear FVA-I am sorry to hear you are having such a bad time of it. RA can be especially difficult to manage, especially when you are first diagnosed and it is out of control. Just keep in mind the fact that better days lie ahead. I mean that! Hopefully soon you will find the right combination of meds that will work for you and provide some relief. Each of us is different and what works for one doesn't necessarily work for another. I am sorry to hear the metho. didn't agree with you, but maybe the arava will kick in. If not. there are other meds you can try like Enbrel which has really helped me.
Contact your Rheumy and tell him or her about your pain. Maybe they can add something to help. I hope you find some relief soon!!!!!
Now on to the most important part of your message. You say:
But like so many others, I don't have a choice to let this slow me down... too many people depend on me......
You won't want to hear this, but you are dealing with a disease that requires a great deal of your time and energy to manage, especially at first. You are going to have to find a way to slow down and deal with what you are going through, which means all those people who depend on you, (with some education and if they care about you), have to let go so you can work on feeling better. You will find that it is almost impossible to keep going at your present rate and continue to function "normally". Something has to give and it needs to be others, not you. This means you may have to disappoint some people and they may not understand. If it involves little ones, then you need support there also. I know, easy for me to say, but you definitely need to slow down and start thinking about you. You must know in your heart that you can't continue to be a mommy, wife, student and employee. Gosh, that is hard enough even in perfect health! It is difficult to accept that RA effects our lives, but once you make some changes and learn to manage this disease, things will be better. RA is not the end of the world, but you do need to make some changes now for the long haul. I have had RA since 2001. When I first got RA, I could barely walk. 7 years later I am doing quite well and life is sweet. I wish you the best!
Steve
Hi Steve- Thanks for your post and comments :))
My kids are little- well my son is a little over 2, my daughter ( step- we have custody) is a big help with him so I'm grateful in that regard. My days are pretty much, up by 5, at the latest 6, at work by 730, home between 11:45 and 12:45 depending on the day ( I work 4 days a week). I physically go to school one day a week, one class in the morning and one at night. My other three classes are online which is a godsend because that is three less chances for me to be around other people and catch a bug :). I do have help- my parents although they still both work full time, help with my son. My hubby is a big help but he's off to work by 845 am and gets home anytime between 7pm and 830( he's picking up the $$ that we lost by me going part time by working extra). By nature, I am a control freak- it is so hard to give up anything. The pain never bothers me when I'm active and doing things... it's first thing in the morning until I can ' loosen up' and then when I finally sit down.... for example, I start my homework usually when hub gets home. Within a half hour to an hour, my feet and legs start to ache. I feel like I have to constantly stretch them/arch them. Then it feels like I can't stop twitching. When it got to be too bad, I'd take a xanax to fall asleep... because even though it didn't help the pain, I at least got some sleep. I go to my rheumy this Thursday and I'm going to ask for something else....I also am going to see a hematologist on Tuesday because my last few bloodworks came back abnormal. I have unusally low red blood cells, hemoglobin, hemocrit, borderline white blood cells, low neutrophils, high lympocytes and sed rate ( 67). However, I tested negative for RA factor which I know is possible. I haven't been on the medication that long and my bloodwork actually started coming back abnormal three months ago.... it was just recently suggested that I go see a hematologist.
How do you deal with the flare ups? This has really knocked me for a loop emotionally. I had suspected something was wrong about a year ago- I went to my pcp and he did blood work and said that i had Epstein Barr and a relapse of my mono ( which confused the hell out of me because I don't ever remember having it to begin with). I"m turning 40 in a few months and I feel like I'm turning 80. Other than rest, is there anything that you avoid foodwise? Any certain activities that I should be doing?
Thank you again :)
Faith
Faith- You do indeed have a busy schedule but also some support possibilities. explore them and use them.
One way that I am able to manage my RA is by making some time to exercise. Sounds silly doesn't it? But exercising helps my joints to stay loose and relieves pain and stiffness. I go to a health club a couple of times a week and do light impact exercise. I also have a little regimen of stretching and exercise I do at home. When I take time to exercise, I am less stiff and less likely to be tired. I also don't get that cramping I gotta get up and move feeling if I exercise. Low impact is the key.
When I have a flare up the only way to beat it is to slow down and take it easy. On those days I may just settle back in my lounge chair and take a long nap. Somtimes it takes a few days to get back to normal if I have really pushed myself over the edge.
With your busy schedule, you really don't have any time to work on you. That is the problem. You are so busy working and taking care of others there is no time for you to manage your RA. Asking you to go to a health club to exercise would be adding one more task to your already overburdened life. That is why you need to find a way to make time for yourself.
I worked as a second grade teacher until I retired in 2004. I spent all my time and energy either teaching or resting up and getting ready to go to work. Weekends were spent on the couch resting and recuperating to get ready for work on Monday. I loved my work but I had no life. I was fortunate to have a supportive wife who helped me keep going. When I was finally able to retire, it allowed me to focus on managing my illness. Things have been much better since. You obviously do not have this option so you will have some difficult shoices to make. I hope you can work out something and find the right path for you.
As far as food is concerned, eating healthy will aide your battle. Fruits and veggies and lots of vitamins. I try to limit dairy and red meat and especially foods with chemicals like bacon and hot dogs. I try to get plenty of rest which means 8 hours of sleep.
I have been on methotrexate and Enbrel for the past 5 years and they have really worked well for me.
I also have a strong spiritual side (strong Faith:-)
I wish you the best in the days ahead!
Steve
I've been meaning to get more exercise in because it doesn't hurt when I do exercise. But you're right.... finding a way to incorporate going to a club would just be additional stress. Right now my exercising revolves around the kids because if we participate together, it saves time in my schedule as well as gives us more time together.
I'm going to school for teaching :) It only took me twenty years to decide what I wanted to do with the rest of my life < chuckles>
As far as my diet is concerned, I haven't had much of an appetite lately. When I do, I tend to gravitate towards chicken, red meat, fruit and veggies. I don't eat seafood and I stay away from pasta/rice/sweets because they make me sick. I don't usually eat processed foods- icky. I had read somewhere that " nightshade" veggies i.e. tomatoes and eggplant aggrivate RA. I certainly hope not because I love them, but I'm willing to do what I need to do.
AND I love the spoon theory! I found it a few weeks ago in another forum that I belong to. I have it downloaded on my computer and I sent it to my close family and friends so that I could better explain what is going on with me.
Thank you so much for your helpful tips and insight- I really really appreciate it:) I'm anxious to hear what the hemotologist and rheumy doc have to say this week.
btw- my first flare up ( which is when I pinpoint that my symptoms were aggrivated) has been since the first week of August this year. We had gone on a trip to the shore and I had problems climbing stairs and my fingers and toes swelled.....
Faith :)