Information & encouragement to fight RA
As always Kelly, your answers to these questions are great! These are the some of the very questions that my daughter recently diagnosed with RA at the age of 38 asked me! I’m afraid my answers weren’t quite as short and sweet but I tried my best and hopefully got her on the right track! Anyway, I got her to a good rheumatologist and into treatment when she was questioning whether she could just take aleve for now and wait. What is our mantra? Early and agressive, right?
yep, finding the right dr who can identify & will treat “early & aggressive” is a huge step. it’s still a huge obstacle for a patient, because “early” might mean symptoms are less severe, so it’s less obvious to you that you’re “sick” & need treatment –
I was asked in an interview yesterday whether there has been progress in the past few years so that if I were looking for dx today, whether it would be any different. I said not really – it’s still mainly dependent on the dr you find – if you find a dr who is able to recognize it early w/out dismissing symptoms. Or who knows about treating to target.
That is my favorite response of all time from you.
“That’s nice. No.”
You had me giggling in painful/tired/dizzy moment when I’m home sick from work. Thank you for that.
Oh, how I relate to #3. The stiff shoulder, the severe issues with hands and wrists tentatively diagnosed as tenosynovitis, the hips so sore I lay on the couch weeping…yes, these were all precursors. In my case, I’m grateful there was no diagnosis when it started, because for some of that time I was uninsured, and that pre-existing condition would have been a disaster. When it really came on strong, it was different (hands I could not bend, for instance), and then I got a diagnosis. Since then I’ve faithfully followed the treatment with moderately good results, and I recommend doing just that. Stay on the meds. Don’t take a chance.
I have some doctors feelings it could be in your neck and some laugh and think this can’t be. Can it attack you vertebrae?
this disease can affect tendons and soft tissue in your neck or the facet joints on either side of the spine – yes. You can see all the articles on RA and the spine by using the Tags – List of topics – just click on the arrow – its near the right top of the page
I love your answers!
I enjoy reading your site. I have RF negative RA. I am taking leuflunomide and Humira. I am a RN. I understand that you need to continue your medicine but I always still have the backround thought that “maybe I am the one who doesn’t have the ongoing RA”. The medicine has really stopped almost all symptoms. Do people ever do a trial of going without medication to see if it returns?
I think many people have Kris, and it’s perfectly reasonable. Of course – especially if you’re feeling better – it’s hard to imagine the invisible effects of a disease that take place inside of our bodies.
Very few people have a response like you describe “medicine has really stopped almost all symptoms,” so I’d also feel cautious.
Have you had any evidence you can look at to help you be more confident that you really do have RA, such as a high antiCCP or CRP, bone erosions, or nodules or a physical change?
There have been times when my meds were clicking just right and I had that fleeting thought of maybe not needing them. Then I’d forget to refill meds and have to go a few days without and my body would let me know that I definitely still needed them.
That’s nice….NO! is just awesome. In the past four months, I have had a similar question except more of a comment….”I don’t need to go to the doctor every day or every time I turn around…perhaps you could get it?!”
I literally laughed out loud at the knee thing. I am amazed at the number of people that say that to me!
Number five is my favorite,as this disease progresses love,hope and optimisim is what we learn with RAD. All great answers to common questions, thank you so much. I learn so much from RA Warrior. Heaven sent.
Excellent point re. choosing “optimism, humour and love”, since soaking in positive emotions changes the chemical cascade.
Negative emotions, result in a series of different chemicals – ones that activate the stress response.
Congratulations on this award from Healthline.com, Kelly! http://www.healthline.com/health-slideshow/best-rheumatoid-arthritis-blogs#3
I liked that one, too! It made me smile (in a sad, yet sassy way…I can imagine the eye roll that went along with it)!
In reference to #3, what about symptoms in the years before diagnosis? I had chronic bilateral tennis elbow so bad that if I tried to hold a cup and was not paying attention, it would drop to the floor. Could it have been early signs of RA? Good post these are very important points.
I’ve been lurking, reading your blog for some time. I love posts such as this one that cut to the chase so quickly. You’re a gifted blogger and valuable resource to the RA community!
Like others who have commented, the “That’s nice. No.” reply is one I find so useful to people with any chronic condition.
It’s so important we give each other permission to just draw healthy boundaries and say “nope.” It’s really okay to just not talk about our disease with people who aren’t trying to get it.
Thanks SO much for speaking up Jen. So I can know youre here and welcome you.
Just wanted to thank you for your site. My mother has RA and Sjogren’s, I have Sjogren’s and Celiac. She just read your article in MORE magazine (I think it was MORE) and called to tell me to “look you up.” My mom doesn’t use a computer.
Thank you for all you’re doing!!
Blessings, and I just liked your FB page.
So wonderful to “meet” you yesterday. My mother wanted me to give you this link. It’s her story in Guideposts magazine about having RA.
I like answer 2 – I just wish my consulant did! He has just been treating the symptons since April ( after taking me off methotrexate as it did not work for me)All I have for now is Paracetamol U.K name for Tylenol I think. As I guess many of you know if it works it is not for long, so I do have a LOT of pain and I feel as if things are getting worse. I see the R.A Nurse in 2 weeks I do hope she can help.
Finally, someone gets it. Thank you Kelly.
Kelly, as always, straight to the point! Thank God for you, the RA world (and me!) need you!
I am “blessed” with an aggressive RA that mtx, perfusions, etc don’t seem to be able to scratch. Currently, i have (among others) 3 bursitis and a tendonitis and a torn fascia, all in the right hip, that sloooow me somewhat. Rheumy keeps suggesting cortisone shots, but i had three this summer (5 this year) to no help whatsoever. I confered with my kinetherapist, who suggested I must rest for 4 weeks, maximum 1 hour of daily activities, then ice and gently stretch. What do you think? Anyone had perhaps a miracle cure for such pain (i know, i know… But i keep hoping!) Help, someone!
#4! Yes, Yes, Yes!
Glad that I found your website. I love the mixture of information, humor and optimism in your writings. I am waiting to see a rheumatologist for the first time in my life and for now just coping with this pain. Almost everyday, I discover a new painful joint in my body but the worst one is my neck which is killing me. So far, I only tested for the RA factor which was negative but I see all the symptoms in my body. I am 32 and had so many plans for my life but now it all seems so bleak and hopeless.
I had a bone on bone thumb surgery in mid January, as a result of RA. I had to stop my humira and other meds three weeks before. I was doing ok without all the meds, much to my surprise, until it was time to restart. Its now April and the RA is still not at the good point of where it was at. I had doubts as to weather I had RA during the times I felt pretty good and I,m back to believing I have RA. If it can be helped
DON’T STOP TAKING YOUR MEDS!
I’m starting to doubt my sanity. I am on CIMZIA and MTX, the combination is really helping. Last April I could barely use my hands, bending down at the knees was impossible, the elbow pain was unbearable, my hands looked like a scene from a monster movie, this year after a sortof diagnosis (most labs were normal), My rheumy started the drugs. I’m walking better, a lot less pain and hands are 50% better. The side effects of the meds are not great, but I think it is worth it. What makes me doubt my sanity is this. If my doc says she’s not sure that I have RA or Sclerederma as she thought originally, what is she treating? am I crazy? am I imagining the symptoms and the improvement? should I just stop the meds? I’m scared, confused, and angry. And if one more person tells me to eat honey, I will scream. I know I did not do this to myself with a bad diet. Thanks all for letting me vent and cry. much love to you Kelly.
Kelly, I read this on your blog back in April and wanted to tell you I love #4’s answer =)
As always, thanks for being our voice,
I have been told to stay away from enclosed structures and avoid crowds. How does a person fetch groceries, attend a meeting, sit in church, go to a holiday party or exercise in a gym or swimming pool with these restrictions?
Last winter I was sick with flu then bronchitis and then an infection that landed me in the hospital. Out of 12 winter weeks, seven were dominated by my bad health issues secondary to RD. Even a boyfriend of 3 years ended the relationship, “your illness is a turn off.”
hi Terri, there’s so much we would say about this. I’m sorry about the bf – I hope it won’t aggravate you if I say he doesn’t sound like he was worthy of you.
One thing you could do is consider a flu shot & talk with your general physician about that. Mine had to convince me, but I’m now convinced. It doesn’t always work, but it has for me.
I think the medications do leave us more vulnerable to every little germ & we have to become a little “fanatical” about washing & touching. But you’re right – germs are airborne too & a gym & pool make you vulnerable.
So where do you exercise? I am eager to keep what range of motion I have. is it true that whenever we lose joint function, we cannot get it back? I have a flu shot every year– oh well.
Terri, I’m not able to exercise in the ways I did before 2006. Until then I ran, swam, played tennis (not very well), lifted free weights, did push-ups & crunches, etc. Plus I did a lot of labor in house & yard that took a lot of strength & endurance (like moving 50lb bags).
Since 2006, I’m not able to do those things – I’ve tried. I move around as much as possible, but am able to very little that some might consider “exercise.” I use 3lb free weights when able, and do modified sit-ups when able. I have been able to swim a couple of times. As a busy mom, some days I walk a lot. Unfortunately, I’ve not responded to any treatment so far and have an unrelenting disease pattern that affects every joint. So all joints are tender & whichever ones I use usually become more inflamed.
Exercise is very individual, as are other things with RD – based on (1) disease activity pattern, (2) which joints are affected, and (3) response to treatment.
Really like your 25 tips, had a great conversation with a group just today. One reminded me of the salt and pepper shakers at restaurants!
Thanks for the reminders.
What a great post Kelly. It’s so important for people to realize that treatments, symptoms, etc are never one size fits all.
I have found that Inflammation is my biggest problem. I have been taking Methrotextrate and prednisone since March. ( being weaned from prednisone). Turmeric, cherries, sweet potatoes, and other foods for inflammation seems to help. I will be trying ginger as well. I find your blog very informative.
Thanks and blessings Kelly. I’m fairly new to this site and am so thankful for you and your insights. Prayers for you and Roo in your personal battles.
Don’t mean to interrupt, but it was asked if anyone remembered the original wallpaper design. Yes, I do. As for the exercise, for now walking is the best I can do. Am so anxious to have a Dexa Scan to see how much improvement has been made after the very large break in my verterbrae, along with the two others with fractures. I have been on Forteo to help repair my bones. It has been an uphill struggle, but feel better now. The bone doc banned me from driving for 3 months, and only in a car for appointments. The last time I saw my RA doc I was told to get more exercise, but didn’t know what to do except walk. It has been almost 2 years, but when I started Forteo the bone doc immediately dismissed me. It was my PC doc who suggested the drug when he found out about the break.
Robyn. I think walking is great!
#3 is how my RA manifested itself early. And unfortunately I was not diagnosed for quite awhile, being seronegative. These other conditions, the ‘itis’ ones, plague me, even on medications. Another thing I have been really wondering about is the fact that I’ve also been diagnosed with severe osteoporosis. Now I wonder whether the bone marrow inflammation caused by RA has anything to do with the development of osteoporosis. I’ve read that RA causes breakdown of muscle tissue fibres too, and it is much harder for us to combat the process of muscle conversion to fat. These connective tissue issues seem to be, (to me) interconnected. I don’t know if there is scientific research to support this or not. Has anyone else heard anything about these issues?
Great answers. Questions I still ask myself six years into this disease.
As usual, your post is very aprepro! Since being forced into this “disability leave of absence” by the company I worked for, I have had some “better” days. The emotional part of that aspect has been tough. Questions from my co-workers are relentless. “When are you going to get better?, You look well! When are you coming back?”
My current battle has been one with my pain meds. While I see a pain management clinic, my Opiod medication is prescribed by my rheumatologist. Apparently the dosage and frequency is above the recommended amount of Tylenol for each day. In order to continue receiving my meds, I have changed pharmacies twice ( I guess the law changes requiring a written script each month has some small advantages!). Hopefully, this will be my new pharmacy home. However, I am anxiously awaiting any new changes coming from current actions.
My question would be, “Why as a pharmacist, who has no or little knowledge of my disease, have the right to question and/or withhold my pain meds?”
I also have been lurking around reading your site and for someone who has not been diagnosed yet but has crohnes and on a possible diagnosis to rheumatoid I love your blog. I have had chronic pain and issues for the past 15 yrs. feels like at times when I feel like I am having a flare (of what they don’t know) that I am falling apart flu like symptoms hand and feet joint pain, palpitations and a feeling of pain all over its terrible. ESR, CRP always high. Just wish my blood work showed something I am so tired of having to go to the dr and they cannot find a clear cut answer joint are slightly inflamed and some thickening but I guess not enough for them to say YUP it’s rheumatoid. It’s frustrating when they want to blame my crohnes and I know it’s not that. No crohnes activity. Even gastro Doctor believes it’s something else. Thank god I got myself a great rheumatologist who believes there is something rheumatological going on so I just need to be persistent until they find the Answer. Keep writing Kelly your awesome.
This article is depressing. Thanks for the HOPE and reassurance. Ha
Mail (will not be published) (required)
Thanks for visiting this unique site full of information and encouragement to fight Rheumatoid Disease. You'll find hope, humor, and a helpful online community. I'm Kelly & I'll be glad to show you around if you'll click right here.