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Rheumatoid Arthritis and Disease Progression: What This Means To me

A Chronic, progressive disease. If you look at the dry, scientific literature speaking about rheumatoid arthritis you will inevitably see this phrase. But what does this mean to you as you go about your day? For me, it means two things- loss over time and change, or adaptation. As my disease progresses it becomes more visible, not only via x-ray but also as I walk down the street. It isn’t invisible to the naked eye anymore, instead, it is one of the first things to walk in the door; a limp, crooked fingers and loss of motion are only the tip of an iceberg filled with challenges.

But as my disease progresses, so does my ability to handle the challenges it brings.

A few years ago I was watching the television show, Chopped, which is a contest in which people have 20 or 30 minutes to come up with a tasty dish out of four ingredients that they only find out about a few seconds before the clock starts. When the final dishes are presented to the judges, sometimes the contestants are asked questions such as why they are on the show, why they became chefs etc. On this particular show, there was a chef who said she was diagnosed with rheumatoid arthritis a few years prior and she wanted to cook as long as she could until the disease took that ability from her. When I heard this I cringed. My immediate thought was, “How negative, what a way to think!” Now, a few years later, as my RA has progressed into my neck, I look back with a different attitude. That chef wasn’t fatalistic at all, instead, she was acting in a smart, realistic way, one that took into consideration the cold, hard facts of her disease and changed her life plan.

I can’t go back…

But I can learn right now and move forward in a different way, and that is what disease progression means for me today. I have finally progressed physically enough that my perspective has progressed as well. In fact, as the New Year rings in 2017, I am taking an assessment of my health, and how I have handled my health challenges for the past year and I am realizing that it is time to change a few things if I want to maintain my quality of life. I can cry, I can scream, I can blame myself, others, God, I can refuse to accept my reality, but none of this will change the facts. So, instead, I choose to figure out how to handle this latest loss, the loss of pain-free movement in my neck, and the implications of this for my daily life.

It has become even more important to maintain motion in the rest of my back, so I am seeing a physical therapist who is advising me on specific exercises that will help my situation. I am researching neck pillows, in order to improve my neck pain during sleep. I am reaching out to other people who live with JRA neck pain to find out if they have any ideas for me. I am discussing my pain with my doctor. I have stopped wearing backpacks. I log roll out of bed. I use a heat pack every night. I massage my painful neck as much as my painful fingers allow.

As I enter 2017, my biggest wish, (since world peace seems to be out!), is to avoid any further physical disease progression but to progress in other ways. Improving my ability to see with clear eyes, and to adapt my life accordingly so that I can wake up every day with more meaning, more purpose, and more joy in my heart. This is the kind of progression I welcome with open arms.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Clim
    7 months ago

    I have RA for the past 10 years. I took pain and inflammation relievers for about 2 or 3 years. Thanks to my primary care doctor who pushed me to see a physical therapist because I’ve been suffering from joint pains in my left hand that had also become stiff. The PT advised me to do lemon water therapy and I’ve been on that for the past 5 years. I haven’t been taking any pain relievers for at least 4 years now. My PT helped me be able to use my left hand again and my RA hasn’t progressed much. I do take ibuprofen when I feel pain on my right hand after working long hours on the computer.
    Water therapy works well for me. It has helped me with other issues I have.

  • kat-elton author
    7 months ago

    Hi Clim! So glad you have found a way to get relief without taking a lot of medication. I’ve gotten really good relief from bathing in natural hot springs high in sulpher; there are so many good options for pain/ inflammation and I’ve never heard of lemon water so thanks for educating me!

  • Mary Sophia Hawks moderator
    9 months ago

    Brilliant!! I so needed this today. I am beginning to truly see where this disease is headed. Thank you for giving me a hopeful plan.
    MS

  • Norreen Clark
    9 months ago

    Wow your story sounds just like mine. Also going to PT for my neck. Memory form pillow works the best for me so far.

  • kat-elton author
    9 months ago

    Hi there Noreen- Thanks for the suggestion, I just bit the bullet and invested in an expensive pillow from relax the back, and after one night wondered why I hadn’t done it last year! I agree, sometimes faith is what gets me through the hard times- RA is so complicated. Good luck on your PT and thanks for writing!

  • Alesandra Bevilacqua moderator
    9 months ago

    Hey Norreen! How has PT been going for you? – Alesandra (RheumatoidArthritis.net Team)

  • Norreen Clark
    9 months ago

    Well I also have rotator cup and bursitis along with the neck so was told lets see what things look like after 6 weeks and it has been 3.I have had RA for 39 years and I’m 66 so things have gotten worse since mid summer. My faith gets me through the tough times.

  • karenb54
    10 months ago

    Thank you for your article. Two months ago I was diagnosed with stenosis in my neck because of RA. I thought I was the only one going through this pain. I have been in physical therapy for a month now and it seems to help. I purchased a heat wrap with message therapy that helps a lot. I use it every night to relieve the pain. But again, just wanted to say thanks for the article, I can relate to you 100%.

  • Monica Y. Sengupta moderator
    10 months ago

    Hey @karenb54!! Thank you so much for sharing! I am sorry about your diagnosis but I am glad the PT is working!! It’s helped me and heat has always worked best for me over ice.

    Please reach out if you ever need to! ~Monica

  • sonial1t6
    10 months ago

    I have bought every cervical or comfort pillow on the market. With other spinal, shoulder, arm and hand involvement, I can only sleep comfortably on my back. The Original Bones pillow works for me. The comfort factor lasts about 2 months, then I change out the pillow. With amazon, it’s hit or miss if the pillow is genuine Original Bones. Instead I buy online from chiropractor offices to ensure the pillow is authentic. Some chiropractor offices offer annual discounts, and I buy in bulk online. The disease progression sucks. I look amazingly healthy … until they look closely at my hands. Only medical professionals can tell that I hide my limp well. What boggles my mind at airports are the rude people who give me a hard stare and feel the need to loudly proclaim, “Wheelchairs are for those who really need it!”

  • sonial1t6
    10 months ago

    BTW, you can buy 8 Original Bones pillows for the cost of My Pillow.

  • danderegg
    10 months ago

    I have had a “My Pillow” for several years now. It’s the ONLY pillow that works for me.

  • Norreen Clark
    10 months ago

    I have an unstable net due to rheumatoid arthritis I find out the memory foam pillow works the best and it’s the cheapest I also went to a physical therapist that had his doctorate degree made a big difference in the exercises he gave me

  • Sammydog1
    1 year ago

    I have also tried many pillows for my neck pain. Te best one for me which has helped tremendously is the My Pillow! Love it!

  • kat-elton author
    1 year ago

    Thanks Sammydog1 – I’m going to look into My pillow

  • Camano
    1 year ago

    I’ve tried every pillow. I have RA and damaged vertebra in my neck. I have to change position often. Up down left right etc. The only pillow that works is Buckwheat husks. I have 3 sizes and don’t go anywhere overnight without one. When you get yours take out some of the seeds until you can easily mold the shape.

  • Monica Y. Sengupta moderator
    1 year ago

    Camano!! I swear by my husk pillow!! It not only helps relieve pain in my joints but it works magic on my sinus headaches as well. I wish more people knew and used these!! ~Monica (RheumatoidArthritis.net Team)

  • TaraG
    1 year ago

    I have had neck problems for several years. I now have schleosios of my C-spine. I also suffer from joint deformity, severe back pain, and respiratory problems. Some days I just cry because I don’t want this to be my story. So every day I get up and I try to do the best I can. What bothers me the most is how a few of my doctors treat me. I have been sick lately and my medical doctor and his nurse treat me like I’m a mental case.
    Sometime I wish they could feel what I feel. I ask for pain medication and all of a sudden I’m an addict.
    My medication co pay has tripled, office calls have doubled and next year when my husband retires I probably won’t be able to afford health insurance because I have a very expensive “pre-existing”condition.
    I don’t know how my story will end….but, no where will it ever say …
    I gave up!

  • kat-elton author
    1 year ago

    TaraG thanks for sharing your story. I’m so sorry you are having a tough time with your doctors, lack of understanding from doctors is unfortunately more common than it should be, And RA is expensive! But I’ve found that with persistence answers can come. You have such a good attitude- keep up the good work!

  • LifenowwithRD
    2 years ago

    I too am very affected in my neck. I have had neck pain that has gotten progressively worse for the past 5 or 6 years. I went through many xrays and an MRI (without the contrast dye needed to see that it was RA ). I’ve tried accunpuncture, steroid shots, massage, and I have an at home traction unit – which I find very helpful. Some days are worse than others, as with all of my affected joints. Thankfully, once treated for RA it has gotten much more tolerable and I can even move my head 3 or 4 inches each way now. It hurts a lot, but less than it did. It’s been the worst part of this disease for me. I have gone through many, many pillows and I’ve had the best luck with “My Pillow”. I have the king sized medium fill. Good luck on your quest for one that works for you, it’s a very tough thing to find.

  • kat-elton author
    2 years ago

    I agree, a good pillow is a treasure! I’m so glad you are finding at least a few things that make the pain more tolerable, acupuncture and massage have both helped me as well. Keep up the good work LifenowwithRD! 🙂

  • GingerS
    2 years ago

    My sister found a neck pillow that is also a vibrator for my father. Who does not have RA but has other neck problems. He swears by it. Helping pain discomfort. That sure would save your fingers. Research it on the net. I’m sorry I don’t have a site for you to go too. Neck pain really sucks! Hope you feel better soon.

  • kat-elton author
    2 years ago

    Thanks much Ginger! I’m basking in all the support from you 🙂 I sure will look into this- it sounds amazing!

  • farmlady
    2 years ago

    Hi Kat,
    I have a water pillow which helps my neck. I have tried about every pillow on the market!!
    You can adjust the amount of water in it to suit your own comfort level.
    Hope this helps.

  • kat-elton author
    2 years ago

    Thanks Farmlady! I love that this idea- I’ll definitely be looking into it 🙂

  • Lawrence 'rick' Phillips
    2 years ago

    I am still hoping for the world peace thing. My hopes die hard.

    As for RA, my hope is to make it another day or so. My longer term RA goal is to also make it without significant loss of function. I hope you make it for a long time without additional loss of function. It will be a good day if we can do this.

  • kat-elton author
    2 years ago

    HI Rick,
    I agree- that’s a goal we can all hope for! I’m toasting to no more loss of function for both of us with my morning tea 🙂

  • Indigo2
    1 year ago

    “Cheers” with my morning tea! Thanks for this article, we are not alone.

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