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...
Hi all. Been reading the forums for a while for info and advice, but wanted to say hi and reach out and get some support from those who can only understand.
I've been on and off a number of meds, and finally started Enbrel 7 weeks ago. The swelling is significantly reduced, but my fatigue has been AWFUL after feeling improvement in week 4. Not sure what will be next but my doc wants me to continue for now. This whole journey has been a huge roller coaster involving a lot of denial, fear, feeling like a sick person, frustration and discouragement. It sounds like many of you have gone through the same emotions. RA has become part of my identity, and I find I am not able to put it aside and stop thinking about it when I am with family and friends that love and support me. Is this common? Does it get better? Do you ever feel like your "old self" and that you have your life back? I'm in my 30's and would like to be enjoying my life, date, and be active again.
Grateful for this group.
Francine
I've been on and off a number of meds, and finally started Enbrel 7 weeks ago. The swelling is significantly reduced, but my fatigue has been AWFUL after feeling improvement in week 4. Not sure what will be next but my doc wants me to continue for now. This whole journey has been a huge roller coaster involving a lot of denial, fear, feeling like a sick person, frustration and discouragement. It sounds like many of you have gone through the same emotions. RA has become part of my identity, and I find I am not able to put it aside and stop thinking about it when I am with family and friends that love and support me. Is this common? Does it get better? Do you ever feel like your "old self" and that you have your life back? I'm in my 30's and would like to be enjoying my life, date, and be active again.
Grateful for this group.
Francine
Fatigue is part of this disease and part of the roller coaster.
I am four years into this journey and still riding the meds roller coaster.
It sounds as though you have a really good support system of family and friends and this is so important.
Tami
This "stuff" we deal with is really hard on each of us in various ways. we each have to work with it and through it to determine our best path forward. As you read all of the life experiences written within this network, you will see the various struggles and tribulations each is working with. I only hope that it will help you learn and keep going.
Peace
Bluedogs2
welcome
welcome
welcome
are you on the mtx with the enbrel? sorry about the unrelenting fatigue. there was more of a fight to the fatigue about me in the beginning. in fact even a flight response. now it's like a split personality living in my previously non fatigued body. sorry you have to be here but we're a good group :)
Ros
Each day with this disease is a different day. I was diagnosed 5 years ago at 35 and I completely understand how intimidating it is to know you have to live with this the rest of your life. The meds are for a lack of better term, horrid. One drug gives you these side effects and this drug over here gives you hair loss, weight gain, flu like symptoms each week, etc. It can be so disheartening to wake up in the morning and wander will you be able to get out of bed and walk, will it take 2 hours to loosen the stiffness, what aches and pains will there be. It is discouraging to reach out to those we love and getting a reaction as "Well, you don't look sick".
You are 'young' into this disease. Over the next couple of years, you will find new ways to cope and adapt your life. I take humira, methotrexate (mtx) and lots of other things and any time I am planning to do something, I always have to stop and think, am I going to be sick that day because I took mtx the night before? My friends and family have all adapted to my 'sick days' but it hasn't been a slow process. It has been a few years of them hearing me plan around my disease for them to ask me, "Hey, are you going to be sick on Sunday?" when asking me to do something.
On this journey, you and your rheumy will hopefully soon find the right mixture of meds that is going to bring you a bit closer to who you were before. I HATE mtx but have had to go back on it because it, along with humira and a couple of other things, brings me as close to me feeling like "ME" again. The fatigue....well, you will never get completely away from it. I have learned when I am pushing it, to just stop and let my body rest. I can then get back up and go again. My wife says "We" that have this disease are like rechargeable batteries. We wake up in the morning with only so much power. As we use our body batteries throughout the day, as the juice begins to run out, our bodies begin to become a bit sluggish and the longer we use our body batteries without recharging, the more sluggish we become. I have to sit and recharge for a bit and then I've got enough juice to chase my 3 girls who are under the age of 4 and keep up with the attitude of my "newly founded adult child" who is only 12.
Our thoughts and support are here for you as it is with one another. Welcome to the group and we hope to continue to see you around. Wouldn't it be nice if we could all meet for coffee? :-)
RAfighter
I just would like to offer my welcome to the group as well. We are glad you are here and look forward to your experiences and input.
As far as the fatigue, I suffer terribly from this. I sometimes wonder if the fatigue is as bad as the pain. But, I then come to my senses and realize walking is difficult because my feet, knees, hips, and back hurt so much and this is just my lower body. Haa!
I would like to add that the roller coaster of feelings you have mentioned has been felt by all on the board. So, you have found people who understand what you are feeling emotionally and physically. I personally feel that this is a pretty good group of peeps.
Again, welcome!
Sincerely,
TheWino
Enbrel worked very well on me up to now. Except infections it helped the fatigue & swelling.
I do think what your going through is completely normal.
It's going through the stages of the grieving process.,
As we do face life changes.
I've had some days that I felt very close to normal.
Not as many as I'd like.
Keep working on the treatment with your doctor & let the dr know you want as much quality as possible.
It can take time.
This is indeed one wonderful group of people. I've not come across another group like this either. Stay in touch & reach out for support.
It's the understanding & realization your not alone that will give you strength & hope.
Blessings, Sammy
Trish, I am learning its a journey, but I'm still not used to it. Guess that comes with time. Good luck on yours and I'm relieved to hear from people who understand.
Angelpuss, sorry to hear you are 4 years in and still working on your meds. I hope you find the right combo soon. And I love your pic!
Tami, thank you for the warm welcome.
Ros, glad to hear your daughter is loving nyc. I have been here 15 years and suspect a move (AZ?) is in my near-ish future. I'm not on the mtx with the enbrel. The hair loss was very serious (like, I'd end up almost bald), and I talked to my doc about possibly staying on it, but he wanted me to stop. The 36 hours of sleep afterwards was also an issue for him.
Bluedogs2, thank you for reaching out and as you said, I wish I didn't have to find you, but I'm glad I did.
RAfighter, thanks for sharing your story. I have friends and family that love me, but they definitely don't understand and I live alone. Some try to understand more than others. But my good friend keeps asking me when I am going to go down to spend a weekend in Philly and meet his new baby. Seriously?! I wish more than anything I could, but he doesn't seem to understand that I can't. I guess this education takes time with those around me too.
Thewino- I have that same exact thought about fatigue being worse than the pain! But yes, I too come to my senses and realize the pain in all of the same areas as you is pretty darn annoying.
Sammy, thank you for the inspiring words. It definitely has been a grieving process and I am nearing the end (thankfully, I guess).
I've been fighting this since my dx and trying to ignore it and keep my life as normal as possible, but I finally gave in and took a leave from work a month ago. I'm so used to being so busy - amazing job, getting my master's at night...but I have had to accept that my body won't allow me to do it all. My rheumy has told me that as long as I can take leave would be best for my health/healing, so I may go back early January. Am getting pretty bored, but trying to do as much as I can to improve. But it sounds like it isn't going to be solved in a month or two, much to my dismay.
Big hugs to everyone, and thanks again for the warm welcome.
Cassie