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Long-distance Hiking with Rheumatoid Arthritis

2011 October 10
by Elizabeth

Playing with our niece and nephew's dress up stuff. This is as crazy as I get. :)

If you know me at all, you probably know that I am an extremely private person. I’ll joke around and have fun, but I’m not really that big on sharing information about myself. However, many of my friends and family have asked about my health and wonder how hiking has effected it and vice-versa. When we were trying to decide if I would be able to physically handle hiking for 6 months, I did a Google search to see if there were others with rheumatoid arthritis hiking. I didn’t find any information. I realize that doesn’t mean there aren’t others, but just in case there is someone out there who wonders, “Can I do this? Have others tried?” I have decided to write a little about my journey.

About 3 1/2 years ago, I was diagnosed with rheumatoid arthritis (RA). I’d been having off-and-on joint pain for about six years which had been misdiagnosed as fibromyalgia. The pain would usually stay for just a few days then go away for several months. Ironically, after a rather intense backpacking trip in the summer of 2008, the pain came as usual, but this time it never went away. Through a series of strange events, I ended up seeing a new rheumatologist who gave me the news that it wasn’t fibromyalgia after all, but RA. At this point I only had a mild case, so my life changed very little other than taking a few extra medications. Over the next two years, my symptoms unfortunately only worsened–more and more joints were involved and the pain was more intense. My medications were constantly changing as the doctor attempted to find the combination of medications that would force the RA into remission.

We had been planning on hiking the Appalachian Trail at some point and had even been actively making plans to do so. However, we were still thinking a thru-hike might be something we should put off until we retired or at least something we would do later–you know, when life wasn’t so crazy.  Even after my diagnosis, we thought at the very least we would wait until after my medications were figured out. But my medications didn’t get figured out. My doctor tried what seemed like every possible combination of drugs, including weekly injections and IV infusions. Nothing seemed to work and my symptoms kept progressing.

We began to think there might not be a later–at least not a later where I would be physically capable of hiking 2000+ miles. In fact, we weren’t sure it was even possible at this point.  We had already been paying off debt and saving money for our trip, but we decided to set an actual date for 2 years later. We began telling our employers, family and friends that we were going to be gone for 6 months.

My prognosis didn’t improve any over the next two years; however, it didn’t worsen either. My rheumatologist wasn’t exactly in support of my trip, but she did help me find a new IV medication I could take right before I left that *should* keep my symptoms at bay for 4-6 months. I had my final dose of this medication the day before we left for Georgia. We left on March 5th, hoping that this medication would indeed last for the duration of the trip.

Thankfully, the medication did pretty well. I wasn’t pain-free, but I was the closest to it I had ever been. When we traveled home in June to deal with the business of selling a rental property, I was able to see my rheumy and she gave me a huge dose of steroids to help with some of the remaining pain.

 

Finally made it.

I would be lying if I said the rest of the trip was a pain-free cake walk. I experienced lots of pain–both related to my RA and pain associated with hiking every single day. In fact, if I would not have had the RA pain, I don’t think I would’ve finished the trip. Sounds warped doesn’t it? Well, it turns out I broke a bone in my foot somewhere in southern Maine. It had been hurting for a long time (probably since Massachusetts), but I think it finally went from a simple stress fracture to a full blown break in Maine. It was somewhere around Andover that the pain became so intense I couldn’t walk. I had some pain killers from a past injury that I took to help dull the pain, but it still hurt like the dickens to walk on it. If I hadn’t been so used to dealing with pain due to the RA, I’m not sure I could have continued. So in a way, my RA helped me reach a dream. Kind of ironic, since I thought it would be the RA that kept me from it.

 

 

Six weeks in a boot

Since we got back, I have seen a passel of doctors. My foot doc gave me an air cast boot, my rheumatologist gave me a shot of steroids and my general practitioner gave me antibiotics. Oh, I also had two cavities. Sometimes, I feel like I definitely got the short end of the stick when it comes to genetics. :) After some x-rays and scans, it doesn’t seem I’ve done any permanent damage to my joints, which surprised me a bit. I’m not looking a gift horse in the mouth here, I’m extremely grateful as well.

 

I was pretty stoked to see how this RA medication I took right before the hike would perform now that I was back to a normal routine. It did so well when I was traipsing all over the mountains, I thought for sure it would totally knock this disease into remission now that I was home.  Unfortunately it wasn’t to be. I had a terrible allergic reaction 5 minutes into a 7-hour infusion. So I have been taken off this medication and I’m now waiting while my insurance decides if they will approve the next medication my doctor has prescribed.

 

Note: please refrain from giving me any unsolicited advice regarding special diets or exercise programs that will get rid of my RA. I promise I’ve tried it. It didn’t work. Nope, not even Shaklee.

33 Responses leave one →
  1. Shanon permalink
    October 10, 2011

    You are the coolest girl I know. (And, I LOVE the note at the end! FUNNY!!)

    • Elizabeth permalink*
      October 10, 2011

      Thanks Shannon! Although, I think you are a bit biased.

  2. Liz E. permalink
    October 10, 2011

    I love that you accomplished this feat, and with RA to boot. Your sis is right, you ARE a cool chick, and I hope you and your “reumy” find a way to kick this to the curb asap!

    • Elizabeth permalink*
      October 10, 2011

      Thanks Liz! The trip was one of the most difficult and amazing things we have ever done. Totally worth all the pain–at least that’s what I think now that I am sitting at my desk mostly healed. :) It’s all about perspective.

  3. Skylar Moon permalink
    October 10, 2011

    Great Article ! You are amazing. Just when I start second guessing if I can do a thru-hike , I read a story lIke yours and know anything is possible if you put your mind to it! Also, love your comment at the end about not suggesting ideas to cure your RA . Lol

  4. Vicki permalink
    April 18, 2012

    I am inspired by your story. I am doing a much smaller thru hike in June of this year( The Colorado Trail 500 miles from Denver to Durango), and have been in a lot of pain. I just thought it was old-age (I am 57), and just keep going. My knees have swollen I have gone up a size in my shoe just during training so I mentioned it to my dr during my yearly check up. It is RA. He is hoping to put the RA in remission by the time of my hike. I really know I will be ok now, because according to the doctor I shouldn’t have been able to train like have been. How much worse can it get than what I have already experienced. So, I hope you are in remission now. I hope you are still backpacking and enjoying the outdoors:) Thank you and God Bless.

    • Elizabeth permalink*
      April 23, 2012

      Vicki,
      I am so glad you found inspiration in my story. I know people with RA are out there doing stuff, not letting their condition put them in a box. However, it seems finding those stories is difficult and that’s why I wanted to share a little of my journey. I’ve yet to find a treatment that completely controls my RA. It seems new treatments are coming out almost every year, so I’m hopeful one of them will work for me.

      I hope your doctor treats your RA aggressively and they find a regiment that works for you. Either way, I believe exercise is essential and helps keep some of the RA symptoms in check, especially things like fatigue and depression. On top of that, I’ve read studies that indicate regular exercise (including strength training) helps with range of motion. So I’ll keep trekking until I absolutely can’t anymore!

      Good luck on the Colorado Trail. 500 miles is a pretty substantial trek!

  5. charlie permalink
    October 21, 2012

    I saw this post and started wondering a few things. I , yoo, have RA and had been dignosed 3 years ago. Two years ago, i became an avid hiker. To date I have completed the NE115, adk 46, cats 3500 and probbaly close to 50 other high peaks in the northeast. Like you, I didnt let it bother me. I suffer from great pain after some hikes, but since I know no different…what can I compare it to?
    Anyways, great job on the AT!

    • Elizabeth permalink*
      October 25, 2012

      Charlie–I’m sorry to hear of your diagnosis. RA isn’t an easy disease, especially if you’re used to being active. I’m encouraged that you’ve been able to keep on hiking and enjoying life. I’m a firm believer that we should keep right on exercising and keeping as active as we possibly can for as long as we can. I think it’s not only better for our bodies in the long run, but also for our mental health! Good luck and happy hiking!

  6. demise permalink
    February 6, 2013

    Thank you for sharing. I.m at the can I really do this stage. I would be interested to know more about your treatment. Thanks again. denise

    • Elizabeth permalink*
      February 6, 2013

      Denise,

      I have taken a variety of medications, but nothing has ever worked for long. During the hike I took rituxan when I was on the trail. I changed to this medication right before leaving on the trail because it last for 6 months. I took it in combination with a daily dose of 20-40 mg of prednisone. I did pretty well during the trip. I hurt every single day, but it was mostly due to the fact I was hiking and not because I had RA. After I got home from the trail, I developed a sensitivity to the rituxan and switched to actemra. The actemra didn’t help much, so I eventually went off of it. I’m currently only taking steroids (shots, IVs and oral meds) as I am on a “mediation holiday” from teh biologics So many of the meds I’ve taken stopped working after 3-6 months, so my doc is hoping that after this holiday, I will be able to re-take a medication and have good results. Who knows what will happen. I just keep right on moving and staying as active as possible, hoping that something will work.

      I wish I could be more helpful, but there just isn’t a specific regiment for people with RA that works in all cases, or even in most cases. Some only take one medication and that controls their symptoms, while others take years to figure out the particular cocktail of medications that works the best for them. It is different for everyone. I suggest just working with a rheumatologist. If you don’t feel like you are getting good care, then switch to a new doctor.

      Good luck! Let me know if there is more I can do.

      • Anonymous permalink
        February 7, 2013

        Thank you so much for sharing. You are an encouragement.

  7. Andres permalink
    January 29, 2014

    Hi Liz,
    I came across your site after searching for “hiking with arthritis.” I’m more of day/weekend hiker, but I always dreamed of hiking the AT or PCT. Four years ago I broke my ankle playing soccer and was then diagnosed with rheumatoid arthritis. I went to a specialist who gave me stem cell shots to the ankle and it worked miracles but unfortunately my insurance did not cover it and I was only able to afford a small amount of treatment. That was 3years ago and the symptoms have return, I hope that one day my insurance will cover it.
    I played soccer all my life and have always been very active. I still do short hikes and kick the ball around but after these activities, I’m in a lot of pain and can barely walk. Your site has given me hope that one day I may hike the AT. I wonder if there are any foundations that combine hiking with supporting the fight against arthritis. Continue the good work here on hassbackwards.com, and good luck!
    Thanks for sharing,
    Andres

    • Elizabeth permalink*
      July 1, 2014

      Sorry it has taken me so long to respond. I’m so sorry to hear about your diagnosis. RA is a very difficult disease to deal with both physically and emotionally. I hope you’ve been able to find a good rheumatologist to help find some relief.

      I’ve no idea if there are any foundations out there that might combine hiking and the fight against arthritis. Have you discovered any? It would be really great if there were and I would be interested in doing some hiking for them.

      I wish you luck and I hope you make it to the AT, it’s a life-changing experience.

  8. MoGirl permalink
    April 16, 2014

    Thanks a million for your post. We had been planning either hiking through Europe and/or the Appalachian trail, as a mean to challenge ourselves individualy but also as a couple. However, I was diagnnosed with Psioriatic Arthritis (PsA) and everything changed.
    I ciuldn’d foresee any future for us and expected the worst. Now, the possibility of going through with this seems possible. I’ll talk to my rheumato asap.

    • Elizabeth permalink*
      April 25, 2014

      MoGirl–I really think you can do it! It may look different than you anticipated, but I think you can make it happen.

      We are now thinking of doing the el Camino trail through Spain. It’s more of a cultural trail with lots of town/ B&B stops. After talking to hikers that did both the AT and the el Camino, I think it will be a lot easier. Perhaps you could find a similar trail?

      I would love to hear about your journey. Good luck!

  9. Luis Tadeo permalink
    May 31, 2014

    Hey!

    I found your blog on google when looking to see if someone with RA or AS (Ankylosing Spondilitis) had gone backpacking through Europe. Obviously what I found was way more intense! I don’t know you and I already admire you.

    I was recently diagnosed with one of the 2 diseases above mentioned, my rheumy doesn’t know yet which one, it seems I’m a weird case… Anyway, it changed my whole life, I’m 20 (19 when diagnosed) and when I was sick and my doctor was trying to find a medication that would put the disease into remission I was bed-ridden, mi right wrist lost 80% of its motion range as did my both knees, apart from being the size of a melon!! I’ve always had many dreams, as I’m sure everyone does, but now I feel as if because of my age I might become disabled while still in my productive years (my disease started as severe…). I’ve been doing great the last couple of months with a biologic medication called Enbrel (I’m sure you’ve heard of it!), pain is gone and I feel like new! So I’ve decided to start saving and paying of some of my credit cards to go on a backpacking trip to Europe, it’s got to happen one way or the other! My life has been really harsh and then I was diagnosed with this bs, so I think that for the first time I will think about what I want…

    Would you say this is a good idea?

    Thanks for this great article, I seriously CRIED when I was reading it, I guess just because I can relate!

    PS. How are you doing now? I see it’s been more than 3 years now!

    • Elizabeth permalink*
      July 1, 2014

      Hi Luis,

      Thanks for your kind words, and I’m glad that my blog post helped you. I know when I first started looking into hiking the AT, I did the same internet search you did. I was curious to know if anyone with RA had done any serious hiking and didn’t find anything. Interestingly, I get periodic comments on this post very similar to yours. So, while I am a VERY private person (as I mentioned in my post), I’m so glad that I posted it.

      I’m sorry to hear of your health problems. Immune disorders can be notoriously difficult to diagnose and even more difficult to live with. I’m really glad your current medication is working. I really encourage you to pursue your dreams, especially since you feel good right now. I’ve found that living with as few “what-ifs” as possibly is far better than the alternative.

      I know I’m really glad that I did the Appalachian Trail, even though I now have some permanent damage in my feet that preclude me from doing anything similar again. Unfortunately, my rheumy still hasn’t found a treatment that has worked for very long. I have tried every category of biologic on the market and I’m currently taking Orencia. It seems to be helping some–it doesn’t completely take away the pain, but it is better than it would have been otherwise. Treatment for RA is different for every single person, so I truly hope that your experience is different from mine.

      Good luck and keep me updated on your journey. I would love to hear about it.

      • Luis permalink
        July 1, 2014

        Hey Elizabeth,

        Thanks for replying to my comment!

        I am so sorry that you haven’t found a treatment that works well for you. I am really lucky that I am almost symptom free now while taking 50mg Enbrel once a week (apparently I have AS, almost 100% sure now) and I want to live life to the max while I can, I am sure you know what having a debilitating disease like ours means to us emotionally, and I just have this constant fear that I won’t get to enjoy the best of life. All is left for me is to figure out how to fund my trip, but I will remain positive and everything will happen in time, I hope!

        I wish you the best and keep fighting, I’ll pray, ask the universe, do voodoo or send you my good vibes so that they find some other medication that will give you relieve for longer, it’s not over ’til it’s over!

        Truly,
        Luis

        P.S: I have been taking Enbrel for 6mo now, I believe. And have been symptom free for about a month. How long did they work for you? I am scared that it will stop working one day, as I’ve seen it’s common with these medications!

        • Elizabeth permalink*
          July 1, 2014

          I sometimes think the emotional toll is worse than the disease itself. Go grab your dreams while you can and try not to live in fear. You’re right, the meds might stop working, but they might not. I’ve read many accounts where the same meds have worked for a long time. Maybe that will be you. :) Happy hiking!

    • dawn cover permalink
      January 31, 2015

      Hello,

      I have RA and AS also…..
      I am so glad to have found this site!!!
      I am planning a hiking trip in May. First trip since I was diagnosed 5 years ago.

      take care.
      dawn

  10. dawn cover permalink
    January 20, 2015

    I used to hike high in mountains years ago. Then rrheumatoid arthritis came into the picture. Things changed right away with pain in all my joints. Today i hiked for the first time in years. My fingers swelled and my knees and hips a killing me. But I can not wait to get back in the woods again.
    Has anyone used hiking poles and do they help?

  11. dawn cover permalink
    January 31, 2015

    Hi,

    I am so glad to have found your blog! Like yourself I have searched on information about people with RA hiking.
    I was a big hiker before I was diagnosed and had to stop when diagnosed.
    I always spent as much time in the mountains hiking and when I stopped I always felt lost, like something was missing.
    I started all the meds, alot of injections and somedays felt worse with the side effects of the meds. So being the intelligent person that I am ..lol… I stopped the meds. ( ya I know )
    I decided and told my husband, I am going to start hiking again. I started out slowly about 5 miles a day around home, with my joints having good days and bad. I started planning a trip in May and brushed off the dust on my backpack.
    If you can give me any tips please do. I would appreciate anything. I am in the process of looking into trekking poles. Money is tight so I am trying to do my research. Do you use poles and does it help? I have this fear I am going to spend $100.00 on poles and not be able to hold them because of my joints. Also do you recommend any shoes. I have columbia boots now, which I boot before I was diagnosed and just started using but they are heavy.
    Sorry for making this so long. But once again thank you for your blog.
    I actually smiled when I finally found your blog. I am not the only one, yippe..lol!
    I have only done sections of the A.T due to lack of time off from work. Tenn, North Carolina, New Jersey, parts of PA and N.Y.

    Keep on hiking,
    dawn

    • Elizabeth permalink*
      August 4, 2016

      It’s been awhile since I checked the blog. I was wondering how your journey has been? How was your RA off of meds and have you had success hiking? I wish you luck and happy trails!

  12. Kellie permalink
    May 3, 2016

    I came across your blog….Thankyou for writing it! I’ve ha RA for about 30 years now…was pretty much in bed all the time, getting super fat and a lifeless slug! Taking every drug they could think of to control the “symptoms” lol …about 6 ish years ago ( I’m almost 50) I stopped taking everything! In the last year I lost over a hundred pounds and decided even if it kills me I’m going hiking! And I do! Every weekend I go either on a hike or up a darn mountain! I’ll tell ya boots make a difference! I wore my sneakers going up the basin in New Hampshire ( where I live) Oui! I then bought a pair of ahnu, they were great on not so intense hikes…then I went up mt. Manadonck and I haven’t been able to walk for a week! So, I just bought some poles and some really Kool looking scarpa mountaineering boots for the next straight up hill rock climb! Funny thing is my joints are damaged and hurt like heck! But know one and I mean know one is going to tell me I can’t do it! Love to you all!

    • Elizabeth permalink*
      August 4, 2016

      I just saw your post–so sorry for the late reply. I’ so inspired by your zest for life! Great job and keep hiking and enjoying life as long as you can!

  13. linda permalink
    July 30, 2016

    I was just diagnosed at age 68 after years of complaint. I did Section J (~60 Miles) of the PCT as my first backpack trip. Had no issues, but I’m still on a small dose of prednisone. I do not plan to let this disease define me.

    • Elizabeth permalink*
      August 4, 2016

      I’m glad you were able to get a correct diagnosis. From experience, I know that can take awhile. Way to go on your PCT trip! Such a beautiful trail. I hope to someday section hike it. We’ve done the John Muir Trail–which runs along the PCT for a good bit of it, and I can’t recommend it enough. Happy trails!

  14. October 27, 2016

    Thank you for this blogpost. I have always dreamed of an AT thruhike with my husband but three years ago was walloped with an autoimmune arthritic condition that makes simple things difficult. Your post inspires me to reconsider. I mean, if I am going to hurt anyway, I may as well hike. Thank you. and my FAVORITE part was your italicized memo at the end. I wish I could say that to everyone in my life! Thanks again!

    • Elizabeth permalink*
      October 31, 2016

      I’m so glad you were inspired and I hope you are able to get out on the AT soon! You won’t regret it! If you think of it, let me know how your trip(s) goes. Happy trails!

  15. Dan permalink
    November 3, 2016

    Hi! Just came across this post (like most of the commentators) while searching for “Hiking WIth Rheumatoid Arthritis.”

    A bit of background: Years ago I did some rambling around the woods/trails while in the military and Boy Scouts. When my kids got old enough, I tried to get them to go to some of the parks/trails around Charlotte, NC, such as Crowder’s Mountain. Nope dad, don’t want to.

    I was diagnosed with RA a few years ago. Meanwhile, my daughter went on a camping/hiking trip with her friends from college, and she loved it! I thought to myself, “Great! NOW she wants to go hiking, when I can’t!”

    Your post, among others, gives me hope that I can get out there with her and work our way to eventually hitting a section or two (or three, or …) of the AT. Now where did I put that day pack?

    -Dan

    • Elizabeth permalink*
      December 1, 2016

      So glad that you’re inspired to get out and hike! Happy trails!

  16. February 6, 2017

    thank you for writing this. I’ve section hiked 256 AT miles to date, and my RA diagnosis came as a real blow. I’m not ready to retire my trailname. It helps to know it’s possible.

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