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...
Well, over the past 1 1/2 years I haven't been on here much. It seems that when we are feeling our best, we seem to be in somewhat of a remission, we forget that we have such a crippling disease until it sticks its ugly face in our lives once more.
For over a year, I have lived at about 98% of who I used to be before my sudden life changes in my body when I was in my early 30's. I went in once every 8 weeks for my Remicade and had full use of my hands, my body, etc. and didn't have chronic pain, stiffness, etc. Life was soooo good! I really forgot about the daily struggles of what this disease brings and I regret that I ever took that for granted.
We bought a new home in January this year and, of course, I overdid it with moving because I really thought I was invincible. We even bought a 2 story home which I never thought I would have to this disease because of feeling so great! I noticed that in mid January with my Remicade that It seemed I was about 85% instead of my normal self. I called my rheumy and he moved me to 6 week treatment instead of 8 weeks. Took the next Remicade treatment and I was at 70%. Frantic is the word I can say at this point that was an example of how I was handling it. I frantically tried anything and everything to get back to my 98%. They increased the mg of my Remicade and moved me to 4 weeks. Today, I have daily chronic pain in my hands that ache all day and night even with taking 800mg of ibuprofen three times a day. My jaw joints ache with such intensity that my entire mouth feels like a giant toothache!
I guess I'm venting to myself of how it seems that when we all feel great and our meds are really doing their job, it seems that we visit this page less, if any at all. I find time and time again that as soon as the ugly headed beast sticks his head into my world again, it is YOU ALL who I turn to for support and comfort because truly YOU ALL have carried me many times when it seemed I couldn't lift my head up and smile at all.
Thank You for ALL OF YOU for being here when I have needed you the most!
For over a year, I have lived at about 98% of who I used to be before my sudden life changes in my body when I was in my early 30's. I went in once every 8 weeks for my Remicade and had full use of my hands, my body, etc. and didn't have chronic pain, stiffness, etc. Life was soooo good! I really forgot about the daily struggles of what this disease brings and I regret that I ever took that for granted.
We bought a new home in January this year and, of course, I overdid it with moving because I really thought I was invincible. We even bought a 2 story home which I never thought I would have to this disease because of feeling so great! I noticed that in mid January with my Remicade that It seemed I was about 85% instead of my normal self. I called my rheumy and he moved me to 6 week treatment instead of 8 weeks. Took the next Remicade treatment and I was at 70%. Frantic is the word I can say at this point that was an example of how I was handling it. I frantically tried anything and everything to get back to my 98%. They increased the mg of my Remicade and moved me to 4 weeks. Today, I have daily chronic pain in my hands that ache all day and night even with taking 800mg of ibuprofen three times a day. My jaw joints ache with such intensity that my entire mouth feels like a giant toothache!
I guess I'm venting to myself of how it seems that when we all feel great and our meds are really doing their job, it seems that we visit this page less, if any at all. I find time and time again that as soon as the ugly headed beast sticks his head into my world again, it is YOU ALL who I turn to for support and comfort because truly YOU ALL have carried me many times when it seemed I couldn't lift my head up and smile at all.
Thank You for ALL OF YOU for being here when I have needed you the most!
I understand exactly what you mean..... i went into a remission this winter.... i was feeling better than i had in 6 years of having RA.... i was walking, working, ... doing normal things and feeling great.... then WHAM!... i got a skin fungus and was taken off the arava that was helping me so much.... but how quickly i started taking it all for granted and thought i would never have RA woes again.... i went on a long weekend out of town with a rigorous schedule.... something i haven't done in 6 years.... and it hit me like a brick wall. I've been struggling for more than a month now. I'm back to being angry and frustrated and very limited. But i know this to shall pass.... and i will feel good again in time...
Good luck to you getting back on your feet... this is a wonderful safety net here on DS.
Sun
As I read your post I too, know your pain... while I was on Humira I felt so good and was thinking that gosh I had not felt this good for a very long time..well that feeling didn't last but for about 4 weeks because Humira made my throat swell so I had to stop it. Will see Rheumy next week to start another biologic...
I have full body pain and it is bad...it feels like every joint is affected. I guess before I was put on Humira I didn't know how much pain my body was really in day in and day out for so many years because I had lived with it so very long. I too have terrible jaw pain. Some days I don't even want to eat because of the pain. I do use a heating pad a lot on my jaw area and it seems to help some.
Sure hope you find the right meds soon to get you back to feeling so much better again. I just wish we all could find the right meds and they would work for the rest of our lives.
during this time she lost her long term business and had to sell her home.
But the remicaide took her out of the hospital bed at age 47 and she was walking again and she could see properly with a lot of eye care.. it then gave her, her life back to almost pre RA. So i understand your story through her experience also.
I met her at an RA support group when the remicaide was just starting to fail.
So I have seen her on both sides of the spectrum.
It seems that when remicaide works it is phenomenal for some folks, but that when the body no longer accepts it as cure there is a rebound.
She is on humira now and lots of prednisone. I keep encouraging her not to look back. At least that treatment time helped her cope with the loss of her identity and income as a self employed business owner. It also eased the transition to selling her prized and well earned and newly built property in New Mexico.
She has stairs also at her place here in snowmaggedon world and we laugh about it since we can't cry about it. It's like a forced march, sometimes on her behind or hands and knees, but it keeps her moving anyway. This is the buddy that laughs more than anyone I know. This is the person that keeps my perception of my own RA, grounded.
She has a lot of faith in her rheumatologist, do you also?
It's a maddening disease.
hang in there.
you have so many good folks to commiserate with. myself included.
don't lose hope.
depot
Nonightshades your posts can have some no nonsense good advice, I'm not a guy but do, as many women, have some qualities I guess you could say, pride, independence, a support for the family, that this disease pokes at.
Hoping you find some relief soon.
I am convinced it made Simponi go from working perfectly to a complete, 100% fail.
But why Xeljanz is failing I do not know. I moved to this town to be able to ride my bike year round, and now I can barely walk across the room. And I get the jaw thing! The pain is horrific. I've been taking muscle relaxants, besides the prednisone and pain killers.
Hard not to look back, when forward seems a dead end.
Keep fighting! I hope you feel better soon!
Debbie
I also have a friend out of state whose RA started way later in life than mine. She also quit a biologic and paid dearly for it in pain.