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...
Sorry guys need to vent to someone who will fully understand. I went back for my check-up with the rheumy on Monday. So disgusted.
A little background first. I had my first Enbrel shot on Sept 17th. Between that and the Otrexup (MTX) shots I was feeling wonderful for about 1-1/2 months. I mean I was feeling wonderful - little or no pain - almost normal again. Then on Nov 2nd I woke up and could barely get out of bed. Hurt from head to toe, hips extremely sore, hands swollen, etc. Spent the whole day in bed. It was a rough week after that. I called the rheumy and she gave me a script for Prednisone. Also told me to make appointment with my PCP and she would coordinate with him (she is 3-1/2 hours away from me and I was in no shape to make the drive). It was decided that I was having a flare-up. Lucky me. Took the Prednisone and Tylenol as requested and made an appointment to see her.
So I go to see her on Monday. Feeling a little better but the Prednisone really didn't make me feel 100% better. I had blood drawn on Nov 3rd and again Nov 10th. Both were normal or our version of it anyway. My husband goes with me to all my appointments. He really tries to understand what is happening to me and I am lucky for that.
So after going over tests results with her, talking about how I felt and still feel she starts asking about my activities of daily living. After we go over my ADLs she says "you need to slow down" and "you need to learn to pace yourself." My husband agrees with her. Apparently when I started to feel better I started to do more thus causing my flare-up. Looking back I can see what he was talking about.
I find it very hard to slow down or even pace myself. Sounds crazy, huh? I was born and raised in Philadelphia. Anyone who knows big cities knows we are always on the go and in a hurry. I moved to Texas several years ago. After moving here I did slow down some but have never been able to fully break the habit of staying busy.
When I was first diagnosed last December i started learning all I could about RA. Double whammy for me though - I was also diagnosed with Lupus at the same time. Yay me! I know that rest is a major factor in our health. I learned the hard way about getting plenty of rest when I started MTX pills as I was so sick all weekend I stayed in bed. I actually felt a little better and less fatigued the next week.
I cut my life back by about 150% and now she wants another 150% - WTH? I find it very hard to give up anymore as I have already cut back so much. I feel that if I continue to give up I will be an invalid. This really sucks! These diseases really suck!! I have agreed to cut back some more and learn to pace myself - will try anyway. I go back in February for another follow-up. At that time we will decide if I should continue on my current treatment or switch things. She is hopeful that I will be able to continue as I was doing so good until I overdid it. I hope so too because I really don't want to keep switching meds. This is all so frustrating.
Appreciate being able to rant. Slow down and pace myself - guess that will be my new chant! Hope everyone is doing good and had a wonderful and blessed Thanksgiving.
Dana
A little background first. I had my first Enbrel shot on Sept 17th. Between that and the Otrexup (MTX) shots I was feeling wonderful for about 1-1/2 months. I mean I was feeling wonderful - little or no pain - almost normal again. Then on Nov 2nd I woke up and could barely get out of bed. Hurt from head to toe, hips extremely sore, hands swollen, etc. Spent the whole day in bed. It was a rough week after that. I called the rheumy and she gave me a script for Prednisone. Also told me to make appointment with my PCP and she would coordinate with him (she is 3-1/2 hours away from me and I was in no shape to make the drive). It was decided that I was having a flare-up. Lucky me. Took the Prednisone and Tylenol as requested and made an appointment to see her.
So I go to see her on Monday. Feeling a little better but the Prednisone really didn't make me feel 100% better. I had blood drawn on Nov 3rd and again Nov 10th. Both were normal or our version of it anyway. My husband goes with me to all my appointments. He really tries to understand what is happening to me and I am lucky for that.
So after going over tests results with her, talking about how I felt and still feel she starts asking about my activities of daily living. After we go over my ADLs she says "you need to slow down" and "you need to learn to pace yourself." My husband agrees with her. Apparently when I started to feel better I started to do more thus causing my flare-up. Looking back I can see what he was talking about.
I find it very hard to slow down or even pace myself. Sounds crazy, huh? I was born and raised in Philadelphia. Anyone who knows big cities knows we are always on the go and in a hurry. I moved to Texas several years ago. After moving here I did slow down some but have never been able to fully break the habit of staying busy.
When I was first diagnosed last December i started learning all I could about RA. Double whammy for me though - I was also diagnosed with Lupus at the same time. Yay me! I know that rest is a major factor in our health. I learned the hard way about getting plenty of rest when I started MTX pills as I was so sick all weekend I stayed in bed. I actually felt a little better and less fatigued the next week.
I cut my life back by about 150% and now she wants another 150% - WTH? I find it very hard to give up anymore as I have already cut back so much. I feel that if I continue to give up I will be an invalid. This really sucks! These diseases really suck!! I have agreed to cut back some more and learn to pace myself - will try anyway. I go back in February for another follow-up. At that time we will decide if I should continue on my current treatment or switch things. She is hopeful that I will be able to continue as I was doing so good until I overdid it. I hope so too because I really don't want to keep switching meds. This is all so frustrating.
Appreciate being able to rant. Slow down and pace myself - guess that will be my new chant! Hope everyone is doing good and had a wonderful and blessed Thanksgiving.
Dana
I'm so sorry! It is very difficult to have a doctor tell you to give up more, when you've already given so much for the disease. I know that when I feel really great I start working out like I used to before the RA, and that always sends me into a crazy flare. I was doing crossfit for a while and then suddenly the humira "stopped working." I think I pushed myself too hard. But I am still able to work 14 hours shifts and be ok, so it's all trial and error I guess. It's a fine balance, isn't it??!?
Hang in there!
His response was so typically male!! LOL He began to advise me that maybe I ought to try other exercises that weren't so "hard on my body and doesn't hurt."
Arg!!!!! I simply said, "An Ironman ALWAYS hurts!"
Anyway, GOD I hear you! When I am hurting my boyfriend always asks "did you over do it?" More often than not, it has NOTHING (or little) to do with my activity level. My RA just IS. I don't link my pain to activity almost ever. Maybe that is my mental block. I don't know. What I do know is that stress is HUGE. I could work all day with horses or dogs and feel awesome. I work 50-60 hours a week for local government and that stress (major politics) is VERY challenging.
So I am not sure there is anything useful there. "Slow down" doesn't really say much. I would say only to be selective of your activities. Take on stuff that makes you happy and don't spend time doing stressful things. Of course I don't know if you have that sort of flexibility. If I didn't have to work I would be VERY active but they would be things that bring me joy -- volunteering for animals, exercise and home improvement would be ALL that I did! So it is the quality of the activity for me -- NOT the quantity.
I will NOT give up what I love to RA. Just won't do it. I have had to adapt some things and how I do them -- but I have never given up or given in. I do have to check out every now and again and sometimes I do have to rest -- but not for long and NEVER with the mindset of "giving up" anything. I haven't for nearly 20 with this disease -- not going to start now.
Hang in there and God bless ya!
RMG
I was just so used to working - I loved to work. Averaged 70 hours per week plus 20 hours a week working my little landscaping business for many years. Then all of a sudden nothing.
It is so hard to not be outside and working around my property now. But on those few days that I feel good enough to get out there and do something, I really pay for it the next 2-3 days. So now I have to make a choice - get out there and do something and plan for a the next few days in the my chair, or not.
Another hard part for me is how to occupy myself. The only thing I like to do is being outside working in some fashion. The past 3 years now I've tried many things but I am just not crafty or have any interest in sitting still. I love to read but get tired of that after 2-3 hours.
So I get it - it sure isn't fair! Adjustments like these in our lives are really hard.
when your body turns to the proverbial pillar of salt i just turn to thinking, talking and solving cerebral cognitive issues.
if you are at the control room of your family in that regard they can turn to you and you'll feel efficacious. i find this works for me. i should be a passenger in car returning to new york city with a college student. i can't. they will probably call 10 times and i'll talk to them on speaker phone 10 times. i don't think about the difference between a decade ago and now, I just think about what i can do and supply which is priceless even if it does not contribute my body today
i am broken today just like everyone else from the company.; enjoy. compensate. payback. repair. heal. start over.
depot
Get the same from my doctor, "you need to change your lifestyle".
On the flip side it's keep moving.
Well I'm working on that in between.
Throw ADHD in to the mix & it's a cruel joke. Never sat down.
I can identify with wanting to scream.
There are plenty of days you can't do what you want.
One side says do it while you can & the other tries to remind me you'll pay for that. Frustrating beyond what others can understand.
Hardest part for me is to not do what I use to.
Sure feel for you. Scream away.
Sammy
I work full-time but am lucky to have an understanding boss. I also have 2 grandmothers I look after. When I finally do get home I have birds to care for - they are my joy and won't let hubby in their room! My daughter is grown and on her own so it is just hubby and I at home which helps. He does the majority of the housework as he works 4 days on then has 4 days off which is a major help for me.
I am so lucky to have found this group as you are all wonderful. I will try to find my "happy medium" if it exists.
Many blessings to all of you :)
Wow, your post really hit home with a lot of us. Here is what I've figured out for myself (only) after battling RA for 45 years:
This experience does not seem to be the same for any two of us.
The biologics do seem to work for many, sometimes too well, giving us a temporary false sense of "normalcy." This same thing happened to me a year ago last August when, after taking Humira for over a year, I felt so good I took up water aerobics, only to have a horrible set back that lasted over a year.
I absolutely still want to go out and exercise, but my feet hurt so badly afterwards, it is hardly worth it. So, I have gained weight. It is very depressing, but....
I had surgery on my ring finger at the end of Sept (boutonniere deformity, due to RA) and now I have a fused finger with a bunch of metal in it. Prior to the surgery, I was on no (zero) RA medications at all (my doc didn't see any "active" inflammation in my blood work, so he only advised me to take Tylenol). I honestly thought I was going to die, or become a complete invalid. I had to buy an elevated toilet seat, it hurt so badly to even bend my knees to get on the toilet. I missed work for the first time in my life. I would wake up in the middle of the night absolutely unable to move at all.
After the surgery, I finally got my RA doc to get me back on another biologic (Enbrel) and I felt better after the very first injection.
After going through what I went through all of last year and then the week before my surgery, there is no way I would risk another downturn (flare). It is depressing for me to feel fat and out of shape, but it is better than the alternative for me. I think sometimes we have to hit rock bottom with this disease to be willing to give up things we once loved doing to avoid going there again.
Be well
Bluedogs2