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...
Since I am newly diagnosed, I don't have much information yet about what I can/should/shouldn't do as far as exercise and how far to push myself.
A few years ago I was very active in martial arts in addition to other physical things. The past 2 years I have not been to any judo classes at all and my old friends there keep asking when I'll be back.
I've stayed in touch with many people from the dojo (through facebook and also the occasional event or holiday party) and my boyfriend still goes there most days of the week (which is where we met five years ago).
They are all pretty much aware that I've been having health issues although they don't know the details. A few of them have things like arthritis and fibromyalgia and are still very active themselves... so they encourage me to come back to classes and just do my best.
What they don't know is that right now I feel lucky if I have days when I can walk without pain. Sleep can be difficult because even rolling over in bed hurts my back and hips. It takes me hours to really get moving each day and move gracefully without limping/hobbling.
A group of them are doing a 5k mud run/obstacle course "fun run" next month and have invited me to go with them.
The one who is organizing the event asked my boyfriend during class if he thought I might like to go with them. He was very honest with her and explained that although it's it's totally up to me (people can opt to just walk the 3 mile course), he wanted her to be aware that I really am having a difficult time and that nobody should push me.
And that If I need to stop, nobody should question me.
He said she seemed puzzled as to why. She started talking about how exercise is important and I need to take care of myself, and how exercise helps her fibromyalgia, etc....
Even though he tried to explain that what I have is different from fibro, she still didn't seem to accept it.
Sometimes I question myself as to whether I'm being a wimp and should keep pushing harder to do more exercise sooner. But I have done that in the past and end up getting worse and then feel miserable. Not being able to do the stuff I used to do is the hardest part of this.
And the GUILT...
So much shame over having gained back a lot of weight these past 2 years as I've gotten worse. And then exercise seems to be the obvious solution (diets have not worked, but I do "clean eating" still) yet causes such severe pain.
How do you guys deal with this issue?
A few years ago I was very active in martial arts in addition to other physical things. The past 2 years I have not been to any judo classes at all and my old friends there keep asking when I'll be back.
I've stayed in touch with many people from the dojo (through facebook and also the occasional event or holiday party) and my boyfriend still goes there most days of the week (which is where we met five years ago).
They are all pretty much aware that I've been having health issues although they don't know the details. A few of them have things like arthritis and fibromyalgia and are still very active themselves... so they encourage me to come back to classes and just do my best.
What they don't know is that right now I feel lucky if I have days when I can walk without pain. Sleep can be difficult because even rolling over in bed hurts my back and hips. It takes me hours to really get moving each day and move gracefully without limping/hobbling.
A group of them are doing a 5k mud run/obstacle course "fun run" next month and have invited me to go with them.
The one who is organizing the event asked my boyfriend during class if he thought I might like to go with them. He was very honest with her and explained that although it's it's totally up to me (people can opt to just walk the 3 mile course), he wanted her to be aware that I really am having a difficult time and that nobody should push me.
And that If I need to stop, nobody should question me.
He said she seemed puzzled as to why. She started talking about how exercise is important and I need to take care of myself, and how exercise helps her fibromyalgia, etc....
Even though he tried to explain that what I have is different from fibro, she still didn't seem to accept it.
Sometimes I question myself as to whether I'm being a wimp and should keep pushing harder to do more exercise sooner. But I have done that in the past and end up getting worse and then feel miserable. Not being able to do the stuff I used to do is the hardest part of this.
And the GUILT...
So much shame over having gained back a lot of weight these past 2 years as I've gotten worse. And then exercise seems to be the obvious solution (diets have not worked, but I do "clean eating" still) yet causes such severe pain.
How do you guys deal with this issue?
In my experience you really can't explain to strangers/others about what we have, they hear the word arthritis and that's the end of the story. Of course everyone you talk to has arthritis. I stopped telling people. Maybe I should start saying autoimmune disease? As much as I want friends and family know more about RA, it's just never going to happen in my case anyway. Neither of my sisters believe there is anything wrong with me and say terrible things about me to my mom. It can cause extreme stress...
Guilt, that's a tough one. You have to let it go or you'll just make yourself feel worse. I gained ~25lbs while on Humira and still haven't lost it. I'm trying to eat better and to just keep moving throughout the day. I try not to sit still for any longer than I have to, but that's hard. I'm lucky, I retired when all this started. I've been eating a lot of greek yogurt - the probiotics are suppose to help the gut and the gut seems to be a large part of the equation with autoimmune diseases.
I probably didn't help much because I'm in the same boat. But I do understand what you're going through and maybe that will give you some comfort. I'm sure others here with better information can help more. I have trouble fitting in anywhere for some reason? I wish you a very slow progressing RA and more pain free days.
Hopefully, you will find a mix of drugs that will help you feel much better. It took me a while - I am on my 6th biologic - and I think this one is working really well. It's not like it was before,but is much much better.
Others can't understand what you're going through but it sounds as if you have a very caring and supportive partner and that is so important.
Please, don't feel guilty, either. As leahdh says, you have to let it go. After all, it's not as though anything you've done has caused your RA - just the "luck" of the game. The unceasing fatigue is what gets to me and, so far, nothing has really helped.
I probably haven't helped much but I know what you're going through and how RA changes your life and life-style.
Other than my boyfriend (long term, "significant other" at this point), I haven't really gotten any support from anyone... until now.
People don't understand and I can't blame them, but I have to stop letting the guilt eat me away. Everyone has their own issues - whether it's fibromyalgia, regular arthritis, or whatnot. But it's not usually comparable to RA.
At first I had thought of this as sort of comparable to fibro because I happen to know someone who "does it all" even with her condition. She's rare (I think). I know others who have fibro and can't even do stairs. It's all relative.
The shame/guilt part comes in where people subtly - or not so subtly make the accusation that "you need to make yourself get up and exercise if you want to improve...."
Sometimes I feel like screaming "You have NO idea what I'm going through!!" I honestly am making every effort to get better, meaning I am trying to lose weight and eat clean and all of that. Just like I did when I was active in martial arts and mountain climbing/hiking.
I am still trying to wrap my head around the idea that just because I did those things a few years ago (with difficulty and a lot of pain afterward!), does not mean I will be guaranteed to do it again.
It might not be a matter of just lose weight (which I gained over the past 2 years when things got worse) and then get back to it.
Maybe the RA will eventually be under control enough for me to do those things, but that depends on whether the treatments work... and not just by my own efforts.
That is the hardest part for me.
I am glad I found this place!
Rest assured that here, you are understood. We "get it," I promise.
I also have felt the urge to scream at someone before. The fibro woman telling you how exercise helps her, so it should help you - well that burns me up. Why do people think we haven't tried?
Do they honestly think they are contributing helpfully, that we haven't tried every single thing imaginable to get this under control?
OK off my soapbox. ; )
Gentle hugs to you - you aren't alone, and you can vent here anytime!
ah of gyms and men or women. i ran a YMCA branch for about decade before diagnosis (or BRA - before RA) - one thing I liked about the gym environment is so many folks do a little of what they can, sick. those ones were my heroines. in the next decade with the active RA and diagnosis i was a paper pusher and all my glory days went to seed with the RA. I pushed back, bad, but there was no way that I was going to get back to the bench pressing competitions or all the other passions and fun of being a gym rat.
you really fight this emotionally the first few years into this disease. ride it out. you will get used to the new reality. and then you will age. so between the new reality and the ageing whole series of "kinder gentler" exercising of movement will force itself into being.
in the meantime try not to do battle with the voices in your head.
I remember this, and emphasize with you.
everyone on here said it all better than I can, no one will get this except you, you are married to it now for the rest of your life. your friends, co-workers, work out partners, neighbors, family, yadda yadda yadda, do not get this and it is tiring educating. so don't feel like you have to educate or retort. put all your energy into finding out what this new version of you can do.
by the way your boyfriend is a champion and a keeper. can you clone him?
hugs
depot
So if you are feeling energetic and good to excercise the rowing machine is good for me in short minute intervals, maybe sets of 4 or 5. I also bought a cheaper 2 in 1 elliptical/bicycle so I can roll out of bed and beat the resistance to not excercise...lol
My PA says recommends for me to not excercise over 45min a day and that seems to be working out well. I have heard Yoga is really good and you really loose weight and get in shape but its been too expensive for me to try out. Keep the Faith and let your husband handle all those people, he seems to be doing a good job, you take care of yourself, don't let negativity get to you. God Bless, your not alone i this!!
you refuse guilt and fear
you do what works for you without the worry of what others think or believe including those of us on this forum because no one lives within your body and mind but you
personally: I do one set of roll outs with the wheel thing for my core, one set of push ups, one minute on a stair stepper (heavy resistance) each day; i have virtually cut out all processed sugar, i eat no night shades; i see a chiro every three weeks; i use two essential oils daily, cypress on irritated joints/tendons and frankincense at the base of the skull to help mellow the anxiety.
The animal is quite active in me but I've not yet had to miss work. I am still pretty mobile (yes, pain is there, nodules on bottom of feet, hands). I am now a size M instead of XL (skinny as a rail). It is what it is and I do what I can to stay as productive and happy as possible. You try different things and find what's right for you. If you don't this animal will eat you up mentally and physically.....which it may do anyway but if at all possible please do not just lay down roll over for it. I wish you the best!
I do not excercise. it just makes the pain worse.. i have had this r.a. since 2004. My s.o. has finally got it.. He watches me do things and how hard it is for me on a bad day. He is amazed that I can do things when i am in constant pain.. Right now I have tendonitis in both elbows and have something going on in my left knee..RA doctor says it is inflamation. NOT> I have been using a cane for 5 months now and I am waiting for a refferal for the orthopidic doctor that did my left knee that had a torn miniscus. My left shoulder is really hurting and I am thinking that is brusitis. You have to become your own doctor at times and stop feeling guilty about what you can no longer do.. I was very active all my life. I could go from 6 am to 2 am and get 4 hrs sleep and start over again.. Now it may take me and hour to get out of bed.. I have just accepted the fact that those days I had before are gone.. I hate that I have this but I cannot change it. I just keep on keeping on. I hope you have many pain free days and get the right combo to help you.
Depot hit it right on. Put your energy into finding what you can do. Never mind what you can't do. Trust me I'm trying hard till this day to follow that same advice on a daily basis. When your active it's hard to relearn limitations. Yet your body reminds you there are limits.
With treatment you may find you can do a little more but we do learn our lives have changed. Never ceases to amaze me how many people have open mouth insert foot syndrome. Meaning they are clueless & yet tell others what they should do. You & I know in these bodies they would eat those words.
I look at those around me With bigger battles like my brother & neighbor battling Cancer. Then I try to remember "OK this sucks super woman retired early but I'm still here & want to be happy".
Rarely sat still, always doing something so like you not being able to do these things is one the the toughest to deal with. Some days It sneaks up on me. You know like when I open my closet & everything falls just missing my sore feet. Wishing I could rearrange & clean it out in my hyperactive way. Now I just take one shelf at a time when I'm up to it.
Mind you just now learning it's a shelf at a time or nothing.
It's over whelming if I allow it to be.
Takes time to adjust & learn what we can do & not do.
Welcome & glad you found these wonderful people.
Sammy