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outsidethelines


Sep 6, 2013, 9:17 PM
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Rheumatoid Arthritis
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Hey everyone,

I was recently diagnosed (about 8 months ago) with rheumatoid arthritis. I have been climbing for 4 years now (or since I was a small child if you count trees, buildings, etc.)

For those of you who don't know, rheumatoid arthritis is not only something that causes joint pain, but it is also an autoimmune disease. Because of this, I find myself exhausted a lot of the time and really struggle with the pain in my hands, knees, and feet to climb anywhere near to what I used to.

I have started to come to terms with the fact I may never be able to do anything higher than a 10 ever again, I still want to be able to climb easy stuff at the gym and have an occasional trek outside.

I am posting here to see if anyone is going through anything similar to what I am and if you have found out ways to cope that make climbing realistic? I have been getting really discouraged lately and have been extremely frustrated with my body and my inability to climb. Thanks for any suggestions!


onceahardman


Sep 7, 2013, 6:40 AM
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Re: [outsidethelines] Rheumatoid Arthritis [In reply to]
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outsidethelines wrote:
Hey everyone,

I was recently diagnosed (about 8 months ago) with rheumatoid arthritis. I have been climbing for 4 years now (or since I was a small child if you count trees, buildings, etc.)

For those of you who don't know, rheumatoid arthritis is not only something that causes joint pain, but it is also an autoimmune disease. Because of this, I find myself exhausted a lot of the time and really struggle with the pain in my hands, knees, and feet to climb anywhere near to what I used to.

I have started to come to terms with the fact I may never be able to do anything higher than a 10 ever again, I still want to be able to climb easy stuff at the gym and have an occasional trek outside.

I am posting here to see if anyone is going through anything similar to what I am and if you have found out ways to cope that make climbing realistic? I have been getting really discouraged lately and have been extremely frustrated with my body and my inability to climb. Thanks for any suggestions!

Obviously a terrible diagnosis.

Presently, the treatments are not great. Joint protection is essential. You will have good days (to weeks) and bad days (to weeks). Avoid climbing when you are in a flareup. Avoid bouldering (because every fall is a groundfall) and climbing little fingery things, and finger jamming. Learn to listen to your body. Try to enjoy swimming, cycling, and maybe paddle sports. Best of luck to you.


outsidethelines


Sep 8, 2013, 6:20 PM
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Re: [onceahardman] Rheumatoid Arthritis [In reply to]
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Thanks for your answer. I already rarely boulder since I just plain don't enjoy it, but when I do I down climb anyways, so that isn't a big deal.

I am trying to listen to my body to know what is going on, but the problem is I am 19 years old and if I am not going to be able to do the things I love, then what is even the point in life? I personally think, without climbing and my other hobbies that all are affected by my RA, I would be a shell of a person.

Anyways, thanks for the response, but was hoping for some tricks on how to continue to make climbing possible Frown


Partner rgold


Sep 8, 2013, 8:01 PM
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Re: [outsidethelines] Rheumatoid Arthritis [In reply to]
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Outsidethelines, a little story for you. Climbing used to be the most important thing in my life, a long time (about forty years) ago. I had conversations in which I said life wouldn't be worth living if I couldn't climb.

Then, one day, I woke up paralyzed from the waist down. My girlfriend got me to the hospital, and I was admitted to the neurology ward. I was told that I had a non-specific viral inflammation of the spinal cord, that I would probably recover a good bit of my mobility, but exactly how much was unknown. Meanwhile I was in a wheelchair. There was no treatment.

I figured climbing was over, I'd be lucky to be able to walk down the street without a cane. But if my legs were f#cked, my mind was fine, and it seemed evident that I ought to try using it a bit more than I had been, seeing that it was the only thing left functioning reasonably well. There's a long story to tell after that reaiization, but the punchline is that I ended up with a PhD in mathematics and became a college math professor.

As it turned out, after a month on the neurology ward, I was discharged and recovered fully in about eight more months. But having confronted the loss of physical activity and having realized that if that's what was in store for me, there were other directions to head in, I never devoted myself again to climbing in the same way. It's not that a door closed so much as other doors opened, and I was so happy to get out of that chair that it seemed ungrateful to ask for much more.

I think it is fair to say, looking back, that the experience changed the course of my life in the best possible way. But of course I got to have my cake and eat it too, because I did recover. Even so, one of the lessons I learned is that our capabilities are more extensive than we believe, and there are unimagined pleasures to be found in realms never contemplated. So don't let your perspectives narrow and blind you to life's opportunities, and remember that the lessons learned from climbing translate well to dealing with all kinds of adversity.

I wish you the very best, and hope you find a path that allows you to do the things you love, and discover new ones.


outsidethelines


Sep 8, 2013, 10:11 PM
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Re: [rgold] Rheumatoid Arthritis [In reply to]
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Thank you for sharing your story. I was really glad to hear you made a recovery from such a terrible accident and situation. I am really glad you were able to find new directions to go in your life and I respect that a lot.

Not to delve too deep into my story, but I am currently going to school to become an engineer, have a long history of academics, etc. I am a knitter. A sewer. A climber. A snowboarder. A reader. I have a lot going on in my life honestly, always busy with something!

The problem with my diagnosis for me is I have seen my grandmas (both had RA) completely deteriorate, be in extreme pain, not be able to enjoy anything in their lives because of the disease.

I have decided to take an alternative path for treatment than the typical medicine prescribed. Because of this, one of the doctors I have seen told me I would probably not live to see 35. I have thought about it all and that is a risk I am willing to take. The side affects alone on the medicines make it not worth it to me.

So really my situation is that I have a small window of time to live. I know I will be in pain and will have to deal with many symptoms. I am only posting on here specifically to ask if there is anyone else who has chosen to do what they love because its what they LOVE, not allowing a disease to redefine them as a person, has any tips for me to manage pain and keep my mental spirits up.

Thank you again for sharing your story with me. I really appreciate you taking the time to share your story and let me know there are other things than climbing. It is inspiring to hear people can recover from major injuries.

I just think you completely missed the point of my post and where I am coming from, because there is no cure for me, no getting better, just living out my few years the best I can doing things I love. I just want to be me without letting this disease change who I am as a person and I just want to be as happy as I can.


milesenoell


Sep 9, 2013, 8:24 AM
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Re: [outsidethelines] Rheumatoid Arthritis [In reply to]
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Listening to your story makes me think of a couple of cancer survivors I know, and while I can't speak from any personal experience, I've seen that those who stay positive and try everything available to them seem to have the best outcomes. Restricting yourself to the things you now and trust may cut you off to the option that your illness would respond to.

My son suffers from a currently incurable condition that has robbed him of his voice, restricts his breathing and requires surgeries every 3 months. We are more than 20 surgeries in and still trying things out, and have not found any treatments that he seems to actually respond to, so we keep going back for regular surgery to his larynx to maintain his airway.

Not everyone finds a treatment that works, but if you stop trying you accept the crappy odds. Don't accept the crappy odds.

One of my best friend's mother was given six months to live nearly ten years ago when they found stage four metastatic lung cancer in her body. She never gave up and is now part of less than half of a percent of a around 10,000 people remaining in her cancer study group. She tried so many things that she has no answer to give when you ask her what the difference was for her.

Just keep trying.


(This post was edited by milesenoell on Sep 9, 2013, 8:26 AM)


Partner camhead


Sep 9, 2013, 8:30 AM
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Re: [outsidethelines] Rheumatoid Arthritis [In reply to]
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I was diagnosed about 6 years ago with Ankylosing Spondylitis, which is an AI disease and a type of Rheumatoid Arthritis (I think). Everything that hardman and Rgold said is right on: flare-ups will lay you out, and you may as well not climb during them, but at other times you'll be fine.

Furthermore, for me at least, I have been able to keep flare-ups (which are mostly manifest in lower back pain for me), I am actually able to keep flare-ups at bay by doing a lot of physical activity (climbing, cycling, hiking). The more active I am, the better my back feels.

My AI issues have altered my approach to climbing– I need more time to warm up, sleeping outside can sometimes be outright painful, I'm more prone to joint issues– but my climbing goals and progression have most definitely not been affected negatively. I'm still doing and progressing exactly as I want to.


onceahardman


Sep 9, 2013, 11:56 AM
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Re: [camhead] Rheumatoid Arthritis [In reply to]
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Thanks for sharing.

Your story reflects a very mature and thoughtful attitude, and I hope the OP pays heed.

The fact that the available answers are not what you want to hear, does not mean there is no optimum solution to you problem.

I wish you and the OP well.


marlene


Sep 9, 2013, 12:26 PM
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Re: [outsidethelines] Rheumatoid Arthritis [In reply to]
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I sent you a private message.

Marlene


Syd


Sep 9, 2013, 11:08 PM
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Re: [outsidethelines] Rheumatoid Arthritis [In reply to]
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It's all part of aging. I'm fine apart from my knees, slipped disc, arthritic hips (I was supposed to have a hip replacement 7 years ago), degenerated neck, bad big toes. I can no longer mountain bike, windsurf, etc etc, but fortunately I can still train and climb well. It's just a matter of adjusting in whatever ways you can, to what life throws at you.


outsidethelines


Sep 9, 2013, 11:55 PM
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I thank everyone for their contributions to the discussion. I understand you all are saying to find something new. That wasn't what I was asking of you, and quite frankly makes me feel even worse about my diagnosis. Of all people, I have found climbers to normally be the most supportive. You don't know my back story with climbing just like I don't know yours. I was honestly just looking for a little encouragement, not told I should completely abandon who I am as a person and let a disease define me, and also abandon something that means so much to me personally.

I seriously thank Marlene for her private message, she gave me exactly what I was looking for with this post.

Camhead, thank you for your advice. I appreciate hearing from someone with some experience in what I am feeling. When I have a flare up I literally cannot get out of bed for anything, much less to climb, so no worries on that front. It makes sense though that more activity will help keep the flare ups away.

Everyone else, thank you for taking the time to read my story and give me your opinions. The only thing I urge for you all is to, next time, look at things in that person's point of view and only give them advice towards what they were asking for. You can do way more harm than good saying things like well you need to stop doing the thing you love because of my personal opinion and story of something not related to your own circumstances at all.

Unless anyone has anything for me specifically with the advice I am seeking, I think it would be best to drop the thread since I will not stop climbing.

Thanks everyone! Cool


jonapprill


Sep 10, 2013, 12:37 AM
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Re: [outsidethelines] Rheumatoid Arthritis [In reply to]
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There are some very effective drugs these days to treat RA. Pharmacology is not my field, but I do have a very close acquaintance who was given a diagnosis similar to what you describe. She's now been in remission for over 15 years and is probably one of the healthiest people I know. I remember that it was very difficult to convince the insurance companies to pay for some of the drugs, but for her the results have been amazing. Please PM me if you'd like her email.


geraldine502


Sep 29, 2013, 6:55 AM
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https://sites.google.com/site/livewatchnflonline/home/pantson2


dindolino32


Sep 29, 2013, 11:59 AM
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Re: [outsidethelines] Rheumatoid Arthritis [In reply to]
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I have been reading a lot on hookworm as a treatment for autoimmune diseases. It's funny because the whole idea makes sense. Until the last 50 or so years, we (as in humans) have been plagued with parasites, worms and all other nasty stuff. Now that we can kill everything in our body, our body starts looking for things to fight. I am in no way saying this is the cure or anything like that, but scientists have been researching into this. The other interesting thing is that there is a higher incidence of autoimmune diseases in "1st world" countries than in "3rd world" countries. Maybe it is because of the lack of resources to study etc etc, but the basic idea makes sense. It's like how we have bred "super bugs" like MRSA from over prescribing antibiotics, or not taking the full treatment.
That is a perfect example of evolution in a population.


boulderpatty


May 20, 2014, 4:12 PM
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Re: [outsidethelines] Rheumatoid Arthritis [In reply to]
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So I just joined the board here because I too have RA and my mom looks horrible with her RA, surprised she is still with us (knock on wood). Anyone with RA MUST READ, The New Arthritis Breakthrough, Henry Scammell or just go to theroadback.org and live yourself a normal and healthy life. Since going on minocycline and off the drugs with crazy side effects, I have run a marathon and am now back to climbing. Read the book and be well!


mring


Jun 18, 2014, 10:26 AM
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Re: [boulderpatty] Rheumatoid Arthritis [In reply to]
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Hey all.

I have arthritis in my big toe joints. It is not severe but has caused bone spures and there is a reduce cartilage issue; obviously.

The biggest issue with cartilage is that as you age and your growth hormones reduces, the cartilage can shrink and become brittle. More importantly it does not heal easily.

As you age, the capillaries retract meaning less blood supply to the cartilage which means it cannot repair. If you do not get enough of the proper amino acids, nutrients, it also causes the cartilage to shrink and become brittle. Then all it takes is one bad hit, landing etc and it rips it, cracks it.

So what can you do?

It is very difficult but you can rebuild the cartilage with proper diet, supplementation and time to heal; we are talking years people.

I have had imaging which shows the bone spures reducing and the cartilage increasing in size over 16 months. It is really tough though.

There is hope however as stem cell research has shown it is totally possibly to repair the cartilage. An interesting note is that in study groups people had complete cartilage repair BUT because it takes years for your cartilage to properly form and harden adequately(growth years) that the people often ended up reinjuring the new cartilage due to it being in a, for lack of better word, softer state.

Anyway.. there is a lot of info out there and I have done a fair bit of research.

Chondrocare is a good supplement and for anyone that says glucosamine and such is not proven to help. I have experimented on myself and can honestly say it does work for me.

It should be noted that things like Glucosamine need a wide variety of other amino acids, nutrients to be properly absorbed and used by the body. So if you do not have the right mix it won't do anything. Since everyones body is different, it is really challenging to have a one fix for all.


M.


rockie


Jul 2, 2014, 9:11 PM
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Re: [outsidethelines] Rheumatoid Arthritis [In reply to]
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I have had it for 10 yrs now, thankfully it was in remission since onset (I demanded the doctors do something about it right now!) and they did. Did not want long term damage for them taking their time, it worked as sufasalazine is good at suppressing the disease process (minimal side effects aside from a lowered white blood cell count - mines always been good on being monitored).

It's been so good my rheumatologist wants me to come right off those meds but I've just reduced to 2 a day rather than 4, no major issues.

But! I definitely know I won't climb higher than 5.10 myself, arms have never been my strongest point though so not sure it's due to this at all! Still work out well with swimming but we all slow down anyway due to age, we are at our peaks for fitness in our 20's not in our 40's, so again I am not putting it down to this. I do get the odd flare up/ joint pain and it tends to go again after 24 hrs, 48 in worse cases like elbow, or wrist commonly. But not that commonly as I rarely get these flare ups (thank goodness!) Sport is meant to be good for us, I've always been athletic and a non-smoker which gives me a very good prognosis they all said, and if anything just been told to keep up my sports. I didn't get diagnosed with raynaulds until then either because I never let that bother me and kept my hands warm anyway and out of cold water ever since I noticed fingers going white while swimming in the fjiords in Norway at age 13.

Hope that helps. The other form of arthritis they can't do sport, so I am glad I got this one if I had to choose. No issues with my heart or anything like that, had that checked too, as it can affect the heart.

In the medical profession myself, someone else who researched it all told me to definitely do light weights as it would help it not deter it, and I believe the truth in that as like I said, the Rheumatologists have encouraged me to keep up my sport not stop doing it.

Should add, I am more for vitamins than medications as I told them at the start, I have all along moreso than not been encouraged to take calcium tablets and vitamin D (so I do take those once a day too in a slightly higher dose).

Lastly, good for you not quitting climbing due to others suggesting you do. If anyone told me to stop mountain biking or swimming I'd tell them to 'Get Lost!'


(This post was edited by rockie on Jul 2, 2014, 9:20 PM)


rockie


Jul 2, 2014, 9:26 PM
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Re: [jonapprill] Rheumatoid Arthritis [In reply to]
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jonapprill wrote:
There are some very effective drugs these days to treat RA. Pharmacology is not my field, but I do have a very close acquaintance who was given a diagnosis similar to what you describe. She's now been in remission for over 15 years and is probably one of the healthiest people I know. I remember that it was very difficult to convince the insurance companies to pay for some of the drugs, but for her the results have been amazing. Please PM me if you'd like her email.

This is very true! While my Mothers best friend is wheel chair bound from RA, I do not see me going down that same route, she was not sporty for one thing, but for another she wasn't treated with this same medication that won some special award or other internationally for it's great effects. I can't remember the name of the award sorry, just remembered my first Rheumatologist back in London, England pointing that out to me who is a Professor in Rheumatology.


28tim


Jul 27, 2014, 5:40 PM
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Tongue


28tim


Jul 27, 2014, 5:49 PM
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it seems you nauty when you are child but now is a hero, I have been many various of mountain ^ climbing, but more excting is himalaya, never excting in my life when on successed reach 8848m, I failed 6times but successed only one time, you can try, Tongue
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