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Real Talk

A few months back I told you I was experiencing wrist pain. I attributed it to carpal tunnel and blamed the knitting of the wedding sweater. At the same time I was experiencing some mild-to-significant pain in my feet and ankles. I attributed that to overdoing it with the hiking in Iceland. So I stopped knitting. And I rested. I googled symptoms and I waited for things to improve.

They didn’t.

I finally saw my primary care physician and explained to her about the pain I was in and she ordered tests. And referred me to a rheumatologist. And that’s the new doctor I saw last week. He was kind and wonderful and knew my chart details without looking at them. He talked to me and listened, he asked questions and examined my hands and wrists and feet. And ultimately, he confirmed what I’ve been suspecting for weeks. I have inflammatory arthritis. There are many types of inflammatory arthritis, including rheumatoid and psoriatic just to name a couple that may be familiar sounding, and we don’t know yet which type of have. The doctor has ordered more tests to try and figure that out but the good news is that the treatment is pretty much the same for all of them: NSAIDs (anti-inflammatory drugs like Advile), steroids (like prednisone), and DMARDs (disease modifying antirheumatic drugs such as methotrexate).

I’m a week into the prednisone dosage and it’s helping immensely. I take my 2nd round of methotrexate today; it will take longer to know if that’s working and if my liver can tolerate the medication. My joint pain is fairly minimal at this point and I haven’t taken any Advil in a week, which is pretty miraculous considering that I couldn’t get through a day without it prior to starting this treatment.

The thing that is truly wonderful, though, is that I am feeling more and more like myself every day. It was a dark and dreadful fall in many ways. My pain was, at times, all encompassing. My ability to focus on tasks was curtailed. My emotional state was a mess and I cried a lot. Chronic pain, as I’m sure many of you know, creeps in and steals the joy out of daily life, leaving us feeling distraught and alone and frightened.

There are a lot of unknowns still, but having a diagnosis and a treatment plan has given me so much hope. Don’t get me wrong, being stricken with an autoimmune disease is the pits, but I also know (thanks to my very wise and wonderful friend Kym) that it’s possible to not just live with this but to thrive in spite of it. That I will never be in as bad a place as I have been for these last few months when I was in active disease without treatment. And that I have an amazing support network of family and friends and community.

I’ve never held back from sharing the details of my life with this blog, all the good and bad and in between. I don’t intend to stop now because writing is how I process my feelings, so you can expect to hear more about how I’m doing and coping with this in the days to come. Please allow me to thank you in advance for your kindness and caring and concern. I consider you all to be part of my circle of friends and I’m so very grateful that you are here.

This Post Has 40 Comments

  1. So glad to hear you are on a path to managing your arthritis. It’s so important to find the right doctor. I am so glad you are feeling better and more like yourself.

  2. While my condition is different, I understand the emotions that go along with this process all to well. But not being burdened with all the dark possibilities and having a doctor you feel cared both for and about you are game changers. You may take longer than you hope finding the optimal mix of solutions, but the hope of being more yourself and reducing pain are life giving. Glad you seem to be on your way.

  3. So very happy to hear things are moving in the right direction. I understand the life suck that constant pain brings and glad you are finding relief!

  4. Chronic pain is the joy killer, without doubt. I hope this resolves quickly with medication. In the meantime, I hope your doctor guides you in learning ways to deal with this on a daily basis. Nothing is more important than finding the right doctor, one who listens well and provides support. As you should know, I send all my fervent hopes for continued improvement and an attitude that keeps hope in view.

  5. Carole. I know EXACTLY how you feel. I found out I have Psoriatic arthritis about 3 years ago and getting the diagnosis was life changing. I was so miserable before and honestly I didn’t know it until I got out of it. It’s insane what you can talk yourself out of. There are some diet changes that helped me immensely too if you care to hear about those.

  6. While it’s certainly not something you’d have ever signed up for, I suspect there’s relief and hope and power in finally *knowing*. And as I read, I kept thinking, I’ll bet she and Kym are on TOP of this… To have a friend by your side to navigate something so big can be a game changer, in so many emotional and practical ways. Especially a friend like her! Sending you the very best, Carole.

  7. I am glad to hear that you’re feeling better. I don’t know about you, but sometimes just having an answer is a huge relief. I hope the medication continues to work, and I’m glad you’ll continue to share what’s happening with us. I know you’re not going to let this defeat you!

  8. I am so glad you have an answer (even if this is the answer) but I am even more glad that you have a treatment plan! Which makes all the difference in the world! I am sending you all the positive thoughts and more. XO

  9. I’m also sending all the positive juju your way. So glad you have an answer and have already started treatment. And yay for Kym being there to support and advise.

  10. Sometimes just knowing what is wrong helps, but I’m so glad that your doctor is able to take action and give you some relief! Let’s hope it continues, and I’m glad you’re feeling so much better – especially at this time of year. Take care.

  11. Sorry to hear this. I have had RA for over 10 years and the struggle is real. But finding the right treatment is key. I found the online communities yo be helpful, especially in the beginning. Hang in there! ?

  12. Being in chronic pain is a terrible way to live, and often a rheumatologist has the answers (and prednisone is magic stuff, too). So much depends on our immune system functioning correctly, but like you sadly found out, things can get pretty bad when the immune system is overactive. I’m glad you’re finding answers and well on your way back to being yourself.

  13. I always appreciate your transparency and your willingness to speak into the tough stuff. I know your story will be just what someone needs to read.

  14. I’m happy to hear that you’ve gotten to the bottom of it, have a doctor that’s in tune, and a plan!! All the best, Carole! xoxo

  15. Like many others, I know how chronic pain can effect every single aspect of one’s life, most importantly one’s mental health. Having a diagnosis and treatment plan makes all the difference! I’m so glad you have great medical care, and wish for improvement for you every day. As always, thanks for sharing. Living an authentic life is the way to true happiness.

  16. Thank you for sharing. Keep smiling my friend. Chronic pain is no joke… glad you have a plan…

  17. I’m glad you finally got some answers. That must have been tough on you. Sending positive thoughts to you.

  18. I’m glad that you now have a treatment plan and are feeling much better. Keeping you in my prayers. Thanks for sharing your joys and struggles.

  19. Hi, Glad to hear you are getting some relief and are getting help. Went through similar symptoms about 5 years ago. My culprit was dairy. I went without dairy for a few days and started feeling much better. A few more days no dairy and no pain in fingers, wrists, elbows, hips. I wish you steady improvement. Do I have pizza once in awhile , Yes. Do I feel it, Yes.

  20. I’m so glad that you have a diagnosis and have started a treatment plan. I hope your pain continues to improve and things get better for you!

  21. I’m glad you found a doctor who could figure it all out. A diagnosis is good because they you have a plan.

  22. A diagnosis and plan relieve pain and anxiety. Invisible chronic illness is draining and I send you much love and healing energy.

  23. I’m so happy to see your face here and to hear that you have a definite diagnosis and a treatment plan that seems to be helping. Hopefully with each week that passes you will get more information about. what works for you best.

    Love you my friend! ??

  24. Carole- your transparency on this and so many other things is remarkable. Thank you. Your words and your wiilingness to be open are so important. I am glad you are feeling more like yourself.

  25. I’m so glad that the meds are helping you. This is a good reminder that we are all more than the small bit we choose to share with others, and a good reason to be gentle with each other!

  26. I think you’ve already heard enough from me. . . Just know I’m here with you ALL the time. You can do this! XOXOXOXO

  27. An answer and an effective treatment is such good news! Chronic pain is soul sucking. I definitely feel your joy that this particular burden is dissolving. I wish you speedy healing!

  28. I am sorry about the diagnosis but I do believe knowing what you are dealing with could be somewhat of a relief. Like you said, now you have a plan, prescriptions to help with the issue and now you are feeling less pain. May the relief continue, and help you cope with what is in front of you. Have a wonderful Christmas season and don’t we all wish for a wonderful 2022!!

  29. Yay for getting to the right doctor and the right meds! and yay (hopefully!) for the return of December joy AND knitting!

  30. I’m glad you found the answer to your pain. I’m also glad you found a doctor whom you can trust. But most of all, I’m glad you are on the meds that work. Aren’t meds great!

  31. Throwing something into the mix which has been a life-saver for the folks in my circle recovering from a variety of illnesses – but obviously feel free to ignore. It’s just something I recently found out about and has made a world of difference to people I care about.

    I have several friends – and a family member – who have an easily-diagnosed (simple blood test relatively inexpensive) genetic mutation called MTHFR (name too long to write) which is recently discovered – and creates a situation where their bodies don’t break down B vitamins into the simplest form (follates) which are needed for many processes in the body. MTHFR may be found in 30 to 40% of the population but doesn’t affect everyone who carries the gene. When it does create a problem, MTHFR affects all sorts of things from auto-immune diseases to fertility to heart disease to depression and anxiety and more. The variety of conditions MTHFR affects has made it trickier to discover/track/study. The folks I know MTHFR affects take pharmaceutically produced follates called Deplin (sp?) which has made a world of difference in their health. Took a while to take effect, unlike drugs like antibiotics which have instant results. I’m sure you have great docs so just throwing this out into the mix of ideas.

    Good luck with your continued path of recovery/rejuvenation!

    1. Thanks, Judy. I have heard of this before, but never paid attention. I will ask my Dr to screen for this, in addition to my regular blood work.

  32. Just back from our family holiday vacation (first in two years) and catching up on my blogs. Of course, yours is first!

    So glad to hear that you have a doctor who listens to you, and cares about you, and not just the diagnosis.

    I see a rheumotologist on January 7th. Mine is for osteopenia and osteoporosis. Completely out of the blue, as I do all the things suggested for healthy bones (except my diet for the last two years). I hope he is as kind and considerate as your doctor.

    Thank you for sharing your path. It helps to know that we are not alone as we go forward learning about ourselves.

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