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 am 46 and recently diagnosed with RA. I went to the Dr for what I thought was a reaction to bug bites. Turned out it had nothing to do with the bug bites, it wasn't Lyme, it was and is RA. It is funny in a way, because I now can recall all of the single joint pains that I have ignored, blaming them on yard work or maybe I did something wrong in lifting something or moving or sleeping. It wasn't until it was my index finger, my pinky, my opposite elbow, my knee and one of my big toes all at the same time that I starting thinking I should go to the Dr. This, of course, was the last thing I expected.
My entire life I have had a good immune system, never get sick with small stuff or flu. I had chronic pain with my back for 20 plus years and finally had surgery for spondolythesis about 3 years ago, so when pain comes and goes it was easy to blow it off as "I'm just getting older".
Now I wonder if the pain in my feet that make it hard to walk on my heels in the morning is connected, the fact that I wake up and have to rotate my wrists, and probably more things I just can't think of right now.
About a year and a half ago I started suddenly having severe dry eye and inflammation, which took me up to about 2 months ago to get Restasis for. It seems now, that it was connected to the RA. I guess it was probably the second sign that something was going on, but who would ever think dry eye equaled RA? My feet have hurt off and on for years, even more so when I exercised, but I never looked into it.
I think I caught it early by the fluke of getting bug bites and thinking I had Lyme or an allergic reaction. That night that led me to the Dr., so far, has been the worst of this experience. I had chills and was freezing, no real fever though, just slightly over normal. I hurt in all the joints mentioned, it felt like someone hit me in all of them with a hammer. They ached horribly, they were all swollen (rings had to come off one hand), and I couldn't put my flip flops on because it was too painful.
It was about 10 days after the blood work was done by the regular Dr, that they called. My RF factor, a 44 and my anti-CPP (I think that is what it is called) was 250. I went to the Rheumy just over a week ago and am on the methotrexate 10 mg a week and folic acid x 1 a day.
I have done a lot of reading and am worried about what it to come. I watched my ex Father in law go very quickly as the RA attacked his hands and lungs over a 3 year period. I know many people live active lives with RA and I hope that will be my story.
I kind of need to not be disabled, as I have a 24 year old adult son who is physically disabled and I have to be able to lift him, carry him, change him, dress him, etc... How is that going to work if I need help doing my own daily needs?
New and worried,
Kat
My entire life I have had a good immune system, never get sick with small stuff or flu. I had chronic pain with my back for 20 plus years and finally had surgery for spondolythesis about 3 years ago, so when pain comes and goes it was easy to blow it off as "I'm just getting older".
Now I wonder if the pain in my feet that make it hard to walk on my heels in the morning is connected, the fact that I wake up and have to rotate my wrists, and probably more things I just can't think of right now.
About a year and a half ago I started suddenly having severe dry eye and inflammation, which took me up to about 2 months ago to get Restasis for. It seems now, that it was connected to the RA. I guess it was probably the second sign that something was going on, but who would ever think dry eye equaled RA? My feet have hurt off and on for years, even more so when I exercised, but I never looked into it.
I think I caught it early by the fluke of getting bug bites and thinking I had Lyme or an allergic reaction. That night that led me to the Dr., so far, has been the worst of this experience. I had chills and was freezing, no real fever though, just slightly over normal. I hurt in all the joints mentioned, it felt like someone hit me in all of them with a hammer. They ached horribly, they were all swollen (rings had to come off one hand), and I couldn't put my flip flops on because it was too painful.
It was about 10 days after the blood work was done by the regular Dr, that they called. My RF factor, a 44 and my anti-CPP (I think that is what it is called) was 250. I went to the Rheumy just over a week ago and am on the methotrexate 10 mg a week and folic acid x 1 a day.
I have done a lot of reading and am worried about what it to come. I watched my ex Father in law go very quickly as the RA attacked his hands and lungs over a 3 year period. I know many people live active lives with RA and I hope that will be my story.
I kind of need to not be disabled, as I have a 24 year old adult son who is physically disabled and I have to be able to lift him, carry him, change him, dress him, etc... How is that going to work if I need help doing my own daily needs?
New and worried,
Kat
I am a smoker, but am going to try to change that. I only drink on every once and a while and only a margarita, not heavy at all. I am with you on hard to accept. I want so bad to go back to the Dr. and tell them to run the blood again and run every other possible test, it can't be right.
Your RA sounds alot like mine, although I was about 35 when diagnosed. I used to think that they got it wrong & didn't have it. LOL! I also started out on MTX, maybe a bit higher dose than you. Over the years, we lowered it & raised it depending on how things were going. Over 9 years it worked really well & I hardly had any pain that wasn't controlled with tylenol/Aleve/Advil. I only recently have changed meds. So, long story short, just take things one day at a time! Good luck!
Anyway, everything I love to do involves working with my hands and the fear of the future is distressing to say the least. I'm in the process of mourning the healthy me that use to be.
I've started Hydroxychloroquine, and I have to say this medication really sucks right now. I'm going to stick with it, but it makes me really sick to my stomach, I am tired most of the time, and if anything I feel more stiff than I did before starting it. Although in all fairness I was on doxycycline for years and Dr. proscribed prednisone the week previous to starting hydroxychloroquine, so I think that part of the problem is that doxy kept inflammation to a minimum. Prednisone was amazing relief, and now that I'm not waiting for the hydroxy to take full effect I hit full blown rebound pain the first couple of weeks.
All I really know right now is this is not what I signed up for. I'm sure it wasn't in your plans either. You aren't alone.
Each journey is different / yet similar. It helped me when I found this website. I do try to eat well. It did not 'cure' me but I do feel better when I try to eat right.
The best things that helped me were: I quit my job, I take naps, I moved into the guest bedroom (so I could rest as much as I needed w/o being disturbed or disturbing hubby) It took him a while, but he got used to it.
I give myself 'days to rest"...., I do not feel bad about saying no to things . I do not over commit. I enjoy the small things in life now. I take projects much more slowly. I quit expecting other people to understand. I just live one day at a time. I grieved my "old life" and gradually began to build a much different, slower paced, more appreciating new life.
It takes time.
Namaste xo Sun
I thought I would spend my 40's and early 50's pushing forward in my career as much as possible, so that hopefully I could retire or semi retire in my mid-50's. I am the sole breadwinner and carry our insurance, so quitting my job is not really an option. At least it's not an option until I would be so affected that I would be considered disabled enough to receive SSD benefits. So now I'm not sure what direction to take. Do I continue to work like mad so and potentially work myself sick, but try to keep the same retirement plan in place, or do I slow down and try to pace myself a bit more and face that I will probably have to continue to work until I'm dead. No exaggeration, if I slow down that is less put into retirement, less to live on now so all plans get extended further out. That also means that if I work myself to the point where I can hardly move then I might not be able to do the hobbies that I enjoy so much. If I pace myself more then I will be working longer and not have as much freedom with my time in my older years that I'd hoped for.
I feel totally worn out on Plaquenil. I seriously feel like I could take a nap every afternoon, but if I do then I can't sleep at all at night.
I also wonder, how do you know when it's time to give up on a medication or add another to it? The pain that I have now is actually worse than before I started to take Plaquenil. I've had one pain free day so far and that was yesterday morning.
1. If a drug / med is not working for me and giving me more days of relief than pain, then for me it's time to move on to the next plan. Most of the time it takes around 3 months to know whether something is working or not. I listen to my gut feeling on this one sometimes.
2. My plans were 'wrecked" as well. Life did not turn out the way I expected. A serious disease took over BUT that's okay now (that took time and a grieving process and some counseling even). Many ppl's lives are wrecked w/ many issues. Some examples of my own friends' lives include the death of their 2 year old to brain cancer, breast cancer, car wreck killing their 30 year old daughter that was 8 months pregnant, heart failure of their son in jr high, suicde. Life goes one day at a time... not necessarily by our plan. And that's okay with me now.
3. I'v e learned to have more understanding and empathy towards those going thru difficulty of any kind. In this life no one goes unscathed. We all have difficulty.... if not now... then eventually. And all is okay after time.
4. Meds help us to a degree... after that I must get rest, pace, do some things that I enjoy (bc life is too short). I must take the opportunities as they come along and enjoy simple things like planting a flower or cooking a meal.
5. Life will tell me one day at a time what is right for me to do. Work? not work? etc. I did work for almost 3 years part time as a college educator (after quitting full time teaching). Then it was time to quit. I have no desire to return now.
6. I WILL have bad days. That's just the life of RA.... and that's okay. I have had a bad crash day today bc I worked too hard in the yard yesterday... but I am enjoying my evening, on my computer, outside on the patio... and I know that tomorrow I will be more rested and it will get better. I don't have to let ALL of today be horrible even though i'm tired and sore. I can look for the little things that went 'right'.
7. Hot baths, candles, pedicures, massages, naps, aroma therapy, yoga (easy), meditation and prayer, patio time, coffee with a friend.... all of these things are part of my healing and taking care of myself with RA.
Namaste xo Sun
I am like you Astlyr, I can't afford to quit my job anytime soon. I am also the bread winner. I am still in the beginnings of this and know that I will have pain to look forward to in the future, but currently the pain is only at a level of just frigging annoying. I also am a go getter and determined to do things, it will be hard for me to stop even when hurting.
I spent the past 20 year, until 2013, in chronic pain daily from a broken back, spondolysthesis 75% shifted spine L4-L5-S1, and I never stopped then. I was still lifting my son and doing what I do everyday through the tears.
I wish I had the ability to do as you are doing for yourself Sunvalleygal. It is great that you have that opportunity to take care of yourself and a supportive husband.
I am however, trying to listen to my husband a bit more and not overdo the things that I do, like yard work and gardening.
Thank you both and everyone else for your comments.