Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
I have just been diagnosed with RA. I had my first flare and was put on Plaquenil and Prednisone. Plaquenil made me terribly nausiated, and the prednisone turned me in to an insomniac and I could barely eat. I am off all meds and the pain is at a creep right now. I am trying to convince my husband we need to move closer to family for support and he thinks I am crazy. He also thinks this nutritionalist I have been seeing is going to fix me. Appt with my Rhemy is next week. Hubby is coming with me. Don't know what I am going to do if we do not plan for the worst. I am in shock and most of family/friends are in denial. Do alot of you out there work? and get help from friends/family with kids? my son is only three so i want to be close to our family for his sake. Am I crazy for thinking we need to prepare for me not working full-time and not being able to do all the super mom things I once did?
i would guess that you would welcome validation. we hear you. there is a wide span across this group. parents, empty nesters, teens, grandparents,
plaquenil is just one of many DMARDS and if it is the first one that you took it is not unusual for any or some or all of us to have been on every DMARD out there initially with allergies to some and an OK response from other DMARDS.
Prednisone is just a bridge drug that masks your symptoms while you are waiting for a DMARD or a biologic to kick in. tapering off prednisone i always rebound to a worse place of pain and fatigue if that is any cross validation to you in terms of your "creep"
i think the nutritionist can be a great thing in terms of feeling efficacious at doing some part of your treatment that you get to control. what goes in your mouth you categorically get to control. :) ha! amen to that!
make sure you follow up with the rheumatologist also (you know the evil script writer :)
i am glad you you have a spouse and that he is supportive. congratulations on the toddler years :) your fridge must be a thing of crayon beauty
take every day as a working within the disease parameters of how you present this week. be kind to yourself. remember that you just put yourself through a course or prednisone which made your heart race, kept you up at night, and ALSO artificially chased the disease away and now it's baaaaaaaaaack.
you are a super mom, period, whether you go physically 100 miles per hour or 20 miles per hour - i am sure you are aware of that at story hour at bed time :)
Depot
Take a moment and breathe!! Breathe and then breathe again...I have had RA now for 20 years. I may be one of the older timers on this board. I don't know!
The first thing you should do you already have done. You have reached out to a group like this. I just recently joined because I was having a crisis and I NEEDED kindred spirits -- people who KNEW how I felt. This is a good place for you.
Second, you must learn all you can about the disease. The good the bad, the realities, the possibilities. Learn about the etiology of the disease and what is really actually happening inside your body. Understand how each medicine works and what it targets and why it helps.
Third, be very patient with your loved ones. MY crisis was based on my relationship and how my RA affects it too -- I have had this for 20 years and I still have a crisis sometimes!. Because our disease is "invisible", there are no open wounds or broken bones and it isn't DIRECTLY and DRAMATICALLY life threatening. It is also very poorly named -- when we use the term "arthritis" every says something like "oh yeah, I have it in my knee." And it ISN'T the same at ALL! We have an autoimmune disease that is systemic and FOREVER and PROGRESSIVE. It was also not linked to any bad decision we made. Our body is attacking itself all the time -- awake or asleep, sitting or standing, laughing or crying.
I recall the day I was diagnosed. It is vivid. I was just told that I had an incurable disease. That it was forever. Medications were going to be a part of my life at only 27 years old. I was a competitive athlete and it was a HUGE part of my life. I was a student and I had a serious work load in front of me. I struggled through and graduated with my degree! Late in life but I was thrilled.
Long story short -- I have had HUGE ups, HUGE downs and an interesting life. I have lived alone and run a small ranch and dude string. I have worked very long hours for most of those twenty years. I have done grueling races that lasted from 12 hours to six days. Yes, I am suborn and hard headed. You can do just about anything you set your mind to.
This is the epitome of ONE DAY AT A TIME. Take today, today and worry about tomorrow when it arrives. You don't have enough information about your disease and your needs or potential needs to plan for the worst.
I don't know how old your kids are but you may need help indeed. You can STILL be a SUPER MOM!! It will look differently than the script you had written for yourself -- but honestly what actually EVER goes according to our script?
Your meds will change until you find what works and what you tolerate well. If you asked all of us what we have been on and the list would be long. The disease as well as our bodies change over time. Some of us get remission from time to time -- some don't. Everyone's RA is a bit unique because we are unique.
Don't give up activities but DO take care of yourself. Movement is GOOD! Don't give up being active. If your hubby is open to the idea, ask him to get on this board and have us answer questions he might have. For whatever reason men often don't want to accept things about us that hurt us that they can't "fix". Welcome to manhood! LOL
Anyway, I have gone on and on. Know that you are NOT ALONE. I will say a prayer for you all!
Take care,
Kyle
I encourage you to take some time. Good docs are hard to come by along with moving and finding different jobs. I work 40 hours a week as a nurse. It works pretty good when the pain is kept at bay. I wish you well and we are all here for you and we have all traveled the same road at one time or another. Hang in there. Take care
These examples are to show you that the future doesn't have to be bleak at all. Yes we walk our own paths through this war and some battles will be won and some will be lost. However the longterm prognosis for RA is much better now than when my mother first developed it.
Good luck on your journey
I just want to say the plaquenil made me nauseated at first too but I was glad I had come here and someone mentioned the nausea would go away soon. less than a week or 2. I forget now.
and it did. I have been on the same combo they gave you, for several years now.
I have liver problems and cannot take any other typcial RA meds.
oh , and I am also used to the prednisone as well and no jittery issues. Of course , I do happen to have ativan for bedtime so that helps. Maybe you could consider a brief or as needed bedtime thing , even chammomile ?
good luck
I'm newly dx'd as well and I am currently on Sulfasalazine and Celebrex with Tramadol as needed for pain. I work a fulltime and a part-time job but my children are adults and my husband is retired and handles the household, cars and lawn. So far RA hasn't impacted my activity too much except for things requiring hand strength and I get tired pretty easily.
The probably with RA is everyone responds differently and progresses differently-- so what is right for one may not be right for another.We can tell you our experiences but of course yours might be entirely different. we may not have all the answers but we are here to support you. Just sorry it had to be this way.
You will always be a super mom even if RA gets you down. :)
When I was first diagnosed, it took about 5-6 months for the meds to really kick in and help. For some it helps right away, for some it will take a while. Sometime it is trying a few different drugs to see which one works the best for you. I was fortunate, I have only been on Enbrel and Methotrexate (and one year of prednsone) and that has been my regimen for 5 years now.
I believe that diet also plays a part. Maintaining a good balanced diet, avoiding sweets and junk food will help. But it is not the cure all. My opinion is to get on the meds now, as to avoid deformity. As your body adjusts to the meds, you may be able to reduce some of them. I used to be on 5 methotrexate pills per week, now I am on three. At once point, I was down to two pills per week. I am working on losing weight and hopefully, I can go back to two pills.
When RA first hit me, I was scared as I am a business owner and take care of my disabled husband. I am busy right out of the gate first thing in the morning and have long days. My son and his wife, once they found out I had RA, and did some reading on it, were in a rush to move from Washington back to California to help me. But I told them no, I am going to be fine. (Even though I was not sure!) Yes, until the meds kicked in, some days I was tired and worn out. If not for my husband needing daily help, I am sure I could work 10 hour work days without a problem. I also bowl, do long walks, etc. I can be physical if need be, but don't try to overwork by body.
Your husband needs to be educated on this if he thinks that nutrition will cure it - it can help, yes, very much! But to cure, I doubt.
Should you move closer to your family? Maybe, maybe not. If it would cause a lot of upending, life changes, etc. maybe hold off and give yourself time to see how this all works out.
I have still have RA swelling, can get tired from it, and I always know it is there. It is hard to remember what my body felt like before RA. But I can function and function well.
Think things thru, don't rush on moving (unless of course, you just want to be closer to family!!) Best of everything to you in this Journey.