Autoimmune Disease & Rheumatoid Arthritis

If you have an autoimmune disease and climb I would love to hear your story. Anything you've found useful navigating the disease would be greatly appreciated.

I was recently diagnosed and now understand the source of the swelling and pain in my hands and shoulders. Trying to understand what this will mean to me as a climber.

Hi Rachael, sorry to hear about your diagnosis. I too suffer from an AI condition, but not one that manifests with arthritis. I find that following a strict diet, avoiding certain foods, provides much relief. Consider seeing a nutritionist who specializes in auto-immune, or an integrative medicine doc.

Also, an extreme example but interesting stuff, check out the Joe Rogan Experience episode with Mikhaila Peterson #1164.

I was recently diagnosed with ankylosing spondylitis. It presents itself with moderate to severe lower back pain (for now). I’ve taken a couple prescriptions (molixicam and naproxen) and they really help. I went 6 straight months with back pain and now I have a few days a week pain free. I’ve been told cutting out all dairy and grains from my diet will help but I’ve only managed to quit dairy so far; it does seem to help.

At first I was pretty bummed but I decided to change my mindset and not let it bring me down. Little bit of pain never hurt nobody ;)

Sending PM.

This is worth watching, Dr Neil Riordan is pretty amazing:
https://www.youtube.com/watch?v=OtL1fEEtLaA

Agreed, Benny! I've definitely received the "making excuses" or "that's just called getting older" many times over the years. Invisible illness is not understandable to most people out there (who aren't affected).

I have an AI disorder that robs me of my aerobic, immune, and recovery abilities. I’m still young and active enough to compensate but won’t know how it’ll affect me as I get older. I do know that I get winded a whole lot easier and faster up bigger routes than my friends and I think I am more prone to overuse injuries as well as take a lot longer to recover. Climbing was a whole fuck lot more precarious when I had a mediport. I just try being diligent with my healthcare, act as a responsible patient, and always bear in mind what’s going on. It’s good to be a proactive patient and see what else (research, treatments, alternative or otherwise, are out there) I don’t think most of my friends know what I have. But I don’t let it get in my head or hold me back. I figure that nothing is as bad as being bed-bound while in therapy, so enjoy climbing while I can.

Check these guys out too, it's awesome to see our sport giving back. A lot of AI diseases share commonality with Cancer therapies and the research overlaps
​Climbers Against Cancer​​​

Check out this Training Beta interview with a woman who climbs 5.13 with RA at age 58!
https://www.trainingbeta.com/media/margarita-martinez/?portfolioCats=72

sending PM!

I was diagnosed with Psoriatic Arthritis when I was about 17 (currently 31). I have been fortunate in that my flare-ups are very well controlled by Enbrel (a biologic). I have been able to train and climb pretty well, but I do find that I am more prone to inflammatory and overuse type injuries. 

I don’t have RA, but I have Graves’ disease which is also autoimmune. Diet and lifestyle changes, dialing in my gut microbiome, and supplementation has worked well for me. Less symptoms, lower antibody levels, fewer meds. Working with a functional medicine doc has been really helpful for me. They actually try to figure out the root cause of your autoimmunity and heal your immune system.  Feel free to reach out! 

Kinda crazy to see this old thread pop up right as I’m posting mine. I just added a lengthy report about what I have been going through with this stuff. I’d love to hear how you’re doing. If any of this stuff sounds relatable feel free to reach out.

https://www.mountainproject.com/forum/topic/120644878/climbing-with-autoimmune-diseasenervous-system-disorder

Dylan, go back and edit your post. I'm interested but it's not readable as a block of text.

I have what's called dermatomyositis. It's just about the worst thing that a climber can get. It very specifically weakens the last, traps, chest, and triceps. Like any climber ever needed those.

Then it gives me terrible skin, only on my hands. Cracks mostly. Also thinner skin on the backs for jamming.

As is common with inflammation disorders, I have a much higher chance of developing interstitial lung disease. Some docs think I have it, some don't. I've got good lungs from the bike so I'm kinda hard to diagnose. Time will tell.

2011 saw me do the FA of a 13c sport route and I also did a bunch of other established routes at 13a.

By 2015 I could still do most 12's but they pissed me off because of how hard I had to work for it.

By 2017 I could do 12a, with rehearsal, occasionally.

By 2021, I haven't sent 12 in two years. I've gotten a handful of mid 11's that suited me. I've lowered off more 10's than I care to admit. Usually because of some funky little move over a roof where I can't establish feet. 

Or let's put it another way. In 2011 I could bench press a little more than my body weight, even though I never hit the gym. I could do one one arm pull-up with the right and almost with the other. I could do about 15 pull-ups no problem.

It's been 5 years since I did a single unassisted pull up. The bungee setup I have to assist me takes probably 75 percent of my weight off and I can barely finish a set of 10. I can do 4 push ups before dropping to my knees.

There's no cure. The treatment consists of immune suppression. The pills didn't work. Long term prednisone isn't viable. And I refused to get an 8 hour infusion once a week. 

It might shorten my life, it might not. We'll see. 

If I only look at my life as an athletic performance, I get depressed. Fortunately, I've got a great wife and kids. Decent career. Overall a good life. I've done more than most.

I do wish I could just go out and crank, and not think about what the old me could have done.

I've got Psoriatic Arthritis. Diagnosed about 10 years ago, but I have been feeling the effects of it for about 20 years.  What works for me:

1. Expensive biologics- Remicade, Embrel, and Symponi (currently).  These work great, but you better have a job with great medical. 

2. Healthy sleep schedule.  Still struggling to get enough sleep with my low impulse control and the siren song of Netflix.

3. Reduce or eliminate sugar, alcohol, wheat, dairy, nightshades from diet.  Easier said than done.

4. Reduce stress at work.  Not happening, see #1.  

So I can climb most things, so long as I don't over torque my fingers in hard cracks.  I mountain bike as much as I want, bones/tendons feel fine currently.  

For reference, before my diagnosis, my fingers were in pain much of the time, and I started to have trouble walking due to inflammation at my achilles insertion.

Good luck.  Find a good rheumatologist to guide you in choosing a biologic.  But they don't know squat about nutrition, etc.  For me, I'm able to reduce the frequency of my Symponi use by working at #2 and #3.

I'd say "great topic," but yeah, this subject sucks. 

I first got an Ankylosing Spondylitis diagnosis in 2006, and while it explained a lot of back pain I'd been having, I didn't have to change my life too much. It seemed to be more episodic than chronically degenerative, and anyone who's dealt with A.S. knows that physical activity/staying flexible is the best therapy you can do. So basically, through all my 30s and early 40s I've just stayed active and limber, and been able to deal with sacroiliac flare-ups pretty well. Tailbone pain seemed to get worked out of my system best by my climbing splitter cracks, the action of doing a high foot cam and just sitting on it opened up my hips super well. Big moves on flowing sport routes seemed to keep me flexible and flare-ups at bay, too.

Until literally a month ago, when the autoimmune demons decided to come out of nowhere and curbstomp my body. I got hit first with some sort of stomach diarreah-type bug, it led to dehydration, some emergency IV's at the ER, and CT scans that showed signs of ulcerative colitis or crohns disease. This episode in turn kicked off an AS flare up that is currently going through my entire spine, and I've been so weak and bedridden that the physical activity that usually staves off my flare-ups is impossible. Right now I feel like I have the back and spine of an 85 year old, I can barely go a mile a day, and everytime I lay down out of exhaustion the stiffness and pain just get worse. Currently up to around 1600mg of vitamin I per day, and it feels like there's no end in sight, definitely the sickest I've ever been.

And to top this whole shit-sandwich off, the day before the stomach bug and flare-ups hit me, I'd fallen off the last move of what would have been my first v10. Right now I can barely do a pullup. I'm waiting for some input from rheumatologists and all that to figure out what longterm treatment is, but it's been super depressing and miserable this last month. I feel like I've aged 30 years in just a few weeks.

I've been dealing with an as-yet-unspecified autoimmune issue (probably some sort of spondyloarthropathy) for about five years now. Started as a swollen knee without any plausible trauma-related cause, and no one thought to send me to a rheumatologist for the better part of a year. Once I went, they put me on methotrexate, which dealt with it pretty well, and I slowly eased off the methotrexate over the next year and a half. Had about one good year without taking any meds, then had a flare-up in my other knee a year and a half ago. Methotrexate didn't work this time, so I started Humira about six months ago and have been very, very happy with it -- in the best way, I just don't have to think about it.

For me, it sucks that I have to pay rheumatologist co-pays and deal with insurance a bunch (though AbbVie, who makes Humira, offers a discount card that makes the Humira $5/month for me). That said, it doesn't impact my climbing right now. It definitely did when my knees were swollen, since they swelled enough to be mechanically limited by the amount of fluid in there, but now that it's well-controlled, it's a non-issue. I take some meloxicam on and off when my back feels stiff (sorta AS-like), usually as a result of excessive driving or sitting at my computer, but I'm able to climb and run and otherwise abuse my joints without issues. Wondering what I'd do if I wanted to go on an extended trip, since I need the Humira every two weeks and it has to be refrigerated, but for now, it's not so bad.

Happy to chat about any of this if anyone's interested, just DM me.

I have crohns. I actually lost all motor control from some kinda guian barre combo with my crohns and had to relearn how to walk/all that stuff. Anyway I am on remicade now, I climb a lot, I run a lot and live my life about as fully as possible so there is hope. Best of luck to everyone!

Anyone read "The Longevity Paradox" by Steven Gundry?  He talks about eliminating lectins to fix auto immune problems.  Lectins allegedly penetrate the gut barrier and enter your bloodstream, causing an autoimmune response.  I'm following the diet for weight loss and anti aging purposes (though much higher protein than he recommends),  but it is worth a try for those with autoimmune issues. 

Five years ago, a high ANA was caught in my blood work while trying to find the cause of a different health issue. This led to an early and unusual catch of antiphospholipid syndrome. So far I haven't had any clots or strokes, but it's a mentally nerve wracking condition to have, although I don't dwell on it much anymore because you just can't if you're going to live your life in any normal fashion (*while it's mostly inactive). I do try to stay hydrated and take an OTC blood thinner, although the evidence is unclear if that prevents clotting in pre-thrombotic individuals or just causes bleeding incidents.  

More recently my blood work has shown that I now have lupus (very common with APS although lupus usually comes first in most people). This shit is for the birds. I've lost 30-50% of my hair and it's greatly increased the number of migraines I get which have become more treatment resistant. No clue if I'll be able to keep climbing or doing anything outside long term. Sun exposure is terrible for most people with lupus -- I even struggle just driving in the car (and I live at high altitude, higher than the majority of "high" western U.S. cities, so that doesn't help). I've spent fuck tons of money on special sun clothes and expensive titantium sunblock but it's not really a panacea -- like, "oh yeah, I can be in the sun for hours now". My river days may be over, and I haven't even tried climbing in the sun yet. The one long hike I did this spring (with sunscreen and a hat) led to skin rashes all over my hands and arms which have never totally resolved since, and I suffered a flare which took up to a month to feel almost normal again afterwards. I've also spent a couple hundred dollars on LED bulbs for my house to eliminate as much indoor UV as I can.  

I'm trying to stay as semi fit as I can in my house and whatever, but things vary and are unpredictable now.... some days I feel good and can do a lot of intensity. Many days the lupus seems to suck away all my muscular strength and stamina, leaving me struggling to do moderate climbing moves or other exercise. I am frequently extremely short of breath, making even easy climbing moves or other activities feel like I just did a crux, although this has nothing to do with my actual fitness. Many days just climbing my stairs at home leaves my legs feeling like lead and my airways short of breath. I also notice that if I lift weights or climb even something as easy as 5.8, I will often have swelling and pain in my finger, hand, or wrist joints for a couple days thereafter. Exercise itself can potentially make lupus worse systemically. It's absolutely ridiculous and I find it unacceptable.   

I've been trying to endure even a half dose of hydroxycholorquine but it seems to have a lot of side effects, including worsened photosensitivity, headaches, and horrendous dry mouth/thirst among other things, so I'm not sure I am going to make it. After that, the med options seem to get stronger. But if I don't get on a treatment, I'm likely to have kidney failure and/or heart damage and/or death eventually.

Currently I'm following the autoimmune protocol diet recommended by the Paleo Mom. It's harder than paleo, no doubt, and I'm not even sure how I would/will eat for a day trip or travel. I'm hoping I can successfully reintroduce foods sooner than later, although generally speaking processed foods are a no-no, although some exceptions some times have to be made no doubt. I went to my first appointment with a functional medicine practitioner a couple weeks ago (an MD in this case who also practices FM). I haven't made it to the blood lab yet to get my special testing started, but I'm hopeful that she can figure out how to treat underlying causes my rheum would never care to give the time of day because it's not necessarily taught in medical school. FM people definitely look at things outside the western medicine scope. 

If any climbers with lupus are reading this, please feel free to PM me with anything else that's worked for you. Unfortunately I come from a family where autoimmune diseases have been genetically passed down multiple generations, which is depressing in and of itself as I've seen the damage done firsthand. I've had some degree of autoimmune symptoms since high school but my blood work showed nothing for two decades. It seems if you feel something, then eventually there will be something.

It’s really nice to see this thread resurrected again. It was a very big help when I was first diagnosed with rheumatoid arthritis a few years ago at 28. I contacted some folks on here who offered great support and encouragement.

My story is pretty simple. Started having pain in my hands and feet that never went away, doctor did a blood test and it was obvious. I feel fortunate to have gotten a quick diagnosis, even though it meant that I have an aggressive form of the disease.

Happy to report that I’m still climbing two years later! I never crushed super hard, so I haven’t lost very much ability to do the things I like. Can’t  boulder much (hard on my knees) and heavy packs are tough. Thankfully my partners are very helpful carrying gear and helping make my climbing goals feasible. I’ve fallen behind in my climbing abilities compared to most of my friends, but they are always game to drag me up something fun. Honestly, one plus of this experience has been how it really made visible the lengths that they will go to help me live as fulfilling of a life as possible.

Some things I wish I knew when I was first diagnosed: 1. I wish I knew how mentally difficult chronic disease can be. Some days I feel like anything is possible, others not so much. Having mental and emotional support is important. 2. I also wish I knew not to compare myself to others or my disease to others who also have RA. It took me a while to realize that how I experience RA is unique in some ways. I became frustrated when I couldn’t do the things that others with or without the disease were doing. When I started to focus on my personal goals I became much happier. 3. There is so much to be excited for! Climbing is great, but RA has also given me the chance to explore new activities. I’ve started writing and skateboarding. 4. Be honest with your rheumatologist about your goals, and find a treatment that works for you. I’ve changed diet (which maybe helps a little) and am taking humira (which helps a lot) and methotrexate.

Thanks again to everyone for sharing your stories here. They have really helped me feel like I’m not alone. Anyone reading this is free to dm me anytime for advice, encouragement, or just because.

Hey there.

My name is Anthony. I’ve been climbing for six or seven years and was diagnosed with chron’s disease and rheumatoid arthritis about a decade ago. My condition gets rather severe and has temporarily taken my ability to walk from me twice! 2018 and 2019 were really terrible years for my health. 2020 was a rebuilding year. 2021 is fantastic. Right now, I’m the healthiest I’ve ever been and am lucky to be skiing and climbing in the mountains I love with the people I love.

Sometimes having a chronic illness is super hard, but, ultimately, I think I’m pretty thankful for  this path.

If you’re navigating with chronic illness and wanna chat - please feel free to drop a line. If you’re in Washington, let’s get out together.

Have a nice day and be well.