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Well, I've made it 47yrs on this earth with no medical problems to speak of and it seems now that I've been affllicted with Rheumatoid arthritis. Around the end of February this year I woke up one morning and out of nowhere, EVERY joint in my body ached like hell! I've been under the care of a rheumatoligist since then and have actually have been doing very well for the last six weeks or so thanks to the prescription meds given me (Plaqunil for the long term and Prednisone for the short term which I'm weining off of now).

The first week in May I did an MTB trip To Fruita CO/Moab Utah that friends and I had planned for a long time and it went really well considering the condition I was in just 8 weeks prior to the trip. While I was somewhat stiff/sore in the mornings, I felt pretty good once I got on the trail and rode every inch of trail that my friends who are 10 and 15 years younger then me did and we rode 7 days in a row out there (I didn't drive 1300 miles to sit around!). As I said....doing pretty good now.

Anyway I'm just wondering if any other cyclists out there are riding with this condition and how you're coping. Any suggestions regarding how to better live with this chronic condition would be much appreciated.

Thanks folks!
 

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There are web boards for people who have your type of arthitis. I have a different chronic disease called ankylosing spondylitis which hit me with, oddly enough, an eye inflammation. At any rate, excercise, such as cycling is good for both of us. Proper fit on the bike, steady motion and using the muscles helps keep the joints lubricated. I woke up with lower back pain a couple of days ago. I took ibuprophen and a fast 20 mile bike ride. I ride with a steady power outpout; that just happens to be my style of riding. The paved parkway trail I ride is mostly flat. I was able to avergae 16.8 mph without too much effort. The next day I noticed I no longer had lower back pain. In the past, when I wasn't a cyclist, I could be worse the next day and laid up with severe pain for a couple of weeks. This how it works for me, you should find out from your doctor what is good for you.
 

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Lucky you've got a diagnosis

Ricko said:
Well, I've made it 47yrs on this earth with no medical problems to speak of and it seems now that I've been affllicted with Rheumatoid arthritis. Around the end of February this year I woke up one morning and out of nowhere, EVERY joint in my body ached like hell! I've been under the care of a rheumatoligist since then and have actually have been doing very well for the last six weeks or so thanks to the prescription meds given me (Plaqunil for the long term and Prednisone for the short term which I'm weining off of now).

The first week in May I did an MTB trip To Fruita CO/Moab Utah that friends and I had planned for a long time and it went really well considering the condition I was in just 8 weeks prior to the trip. While I was somewhat stiff/sore in the mornings, I felt pretty good once I got on the trail and rode every inch of trail that my friends who are 10 and 15 years younger then me did and we rode 7 days in a row out there (I didn't drive 1300 miles to sit around!). As I said....doing pretty good now.

Anyway I'm just wondering if any other cyclists out there are riding with this condition and how you're coping. Any suggestions regarding how to better live with this chronic condition would be much appreciated.

Thanks folks!
Been having hand trouble for just over a year now; just turned 45 last week. After putting up with it, I went to the Orthopedist, who couldn't find anything. Must be RA (in the absence of other conditions). The blood work was WAY negative for RA (my sedimentation rate is 2, healthy is 20, diseased is 200), so, let's try OA. Of course OA has no marker. Been to a rhumatologist and 2 hand specialists w/o any help. MRI and X-ray show nodules and calcification, but nothing they can help with. I'm basically SOL. I quit the Celebrex and the glucosamine since it wasn't making a difference worth the expense, hassle and toxicity. My fingers are "drifting" (think claw hands) and my knuckles are swollen and deformed.

Anyway, at least the bike is a psychological release from worrying about the issue. The mental benefit is exceptional versus doing nothing and dwelling.

"I feel your pain".

Dave
 

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Discussion Starter · #4 ·
Insight Driver said:
There are web boards for people who have your type of arthitis. I have a different chronic disease called ankylosing spondylitis which hit me with, oddly enough, an eye inflammation. At any rate, excercise, such as cycling is good for both of us. Proper fit on the bike, steady motion and using the muscles helps keep the joints lubricated. I woke up with lower back pain a couple of days ago. I took ibuprophen and a fast 20 mile bike ride. I ride with a steady power outpout; that just happens to be my style of riding. The paved parkway trail I ride is mostly flat. I was able to avergae 16.8 mph without too much effort. The next day I noticed I no longer had lower back pain. In the past, when I wasn't a cyclist, I could be worse the next day and laid up with severe pain for a couple of weeks. This how it works for me, you should find out from your doctor what is good for you.
Thanks, I'l have to poke around on google to find those web boards you're talking about.

I've found that staying in motion is the one thing that keeps me from stiffining up. I'm lucky to have a job where I'm on my feet a lot and this is probably the main thing that got me through the worst of this "flare". Suprisingly I havn't missed a single day of work because of this condition, it was VERY painful to walk or even to lift a cup of coffee for a couple of weeks when I was at my worst but I knew ifI stayed home I'd just sit around and stiffen up even more.

My doc says to do any exersise that I like as long as I feel up to it, motion is medicine. Many times it was very difficult to convince myself to get out on the bike but once I got moving along I felt better both physicially and emotionally....cycling, either road or MTB, is a wonderful drug:).
 

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Discussion Starter · #5 ·
pitt83 said:
Been having hand trouble for just over a year now; just turned 45 last week. After putting up with it, I went to the Orthopedist, who couldn't find anything. Must be RA (in the absence of other conditions). The blood work was WAY negative for RA (my sedimentation rate is 2, healthy is 20, diseased is 200), so, let's try OA. Of course OA has no marker. Been to a rhumatologist and 2 hand specialists w/o any help. MRI and X-ray show nodules and calcification, but nothing they can help with. I'm basically SOL. I quit the Celebrex and the glucosamine since it wasn't making a difference worth the expense, hassle and toxicity. My fingers are "drifting" (think claw hands) and my knuckles are swollen and deformed.

Anyway, at least the bike is a psychological release from worrying about the issue. The mental benefit is exceptional versus doing nothing and dwelling.

"I feel your pain".

Dave

My blood work for RA is showing negative as well, the only thing blood tests are showing is that I have inflamation (no kidding!). My rheumatoligist says that this is called zero negative results and isn't all that uncommonand if I weren't feeling substantial relief as I am I'd undoubtdly be insisting on some better answers. I actually wonder if this is some double talk that the doc is giving me but the bottom line is that I'm feeling much better. I have some stiffness in my hands, knees, shoulders when first wakeing but it clears up in a matter of minutes now and I feel very close to "normal" for the most part.

There's no telling what could be causing the problem with your hands but if I were you I'd be going ballistic by now that they aren't coming up with any answers or at least prescribing something that will offer some relief. Seems being the 21st centuary they ought to be able to do something for you to help even without a definite diagnosis.

Best of luck to you, hope you find some help.
 

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Ricko said:
Anyway I'm just wondering if any other cyclists out there are riding with this condition and how you're coping. Any suggestions regarding how to better live with this chronic condition would be much appreciated.

Thanks folks!
Like Insight Driver, I've got AS... not the same as RA, but we all sit in the same waiting room at the Rheumy's office, so...

Seven years ago at age 28 I got out of bed one morning and my left hip wouldn't support my weight. Fell on my back, couldn't get up without help it hurt so bad. Took about six weeks for the docs to figure out what it was... the whole time being virtually untreated. Since then I've gotten on with the rheumy and have done three (or four?) different NSAIDs, a COX2 inhibitor and lots of steroids (medrol). Just had a flare three weeks ago that the medrol wasn't touching. Went to the rheumy and he finally got as paranoid as I've been for a while about my total consumption of the 'roids (corticosteroids = not good for long term health). So we decided to see if my insurance would pick up a tnf inhibitor (Embrel, Remicaid, Humira), and low and behold this stuff that costs $1500 a month only costs me a $20 copay. WOOOO HOOO! So far I've shot myself up once and I'm feeling great (who knows, could be placebo effect).

As I've told others, it's one of the best things that ever happened to me. Pre-diagnosis, I was a couch potato. Post diagnosis, I got back into exercise, then riding my mtb, then racing my mtb, then racing on the road, and I'm currently racing Cat3 pretty competitively. Pre-diagnosis I never would have known that I had any athletic ability. Of course the flares SUCK, and whenever I get a bad one it puts me in an awful mood... I'm a huge PITA to be around. But most days aren't like that... not even close.
 

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Not to be a nit-picker, but I think you're referring to "sero-negative" RA. :)

I don't think he's pulling your leg since rheumatoid factor is negative in 20-30% of RA patients. I'm glad you're doing well-- one thing you should know is that RA is a systemic disease which can affect multiple organ systems, not just the joints. I'm not saying this to freak you out, just to let you know that if you experience any odd symptoms or decline in cycling performance not related to the pain and stiffness in your joints, it wouldn't be a bad idea to let your rheumatologist know. Take care, and keep riding!
 

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I have no health insurance so I try clinical trials. I have psoriasis with arthritis. I was in a clinical trial for Enbrel and it was wonderful..Some others have worked also. What helped my arthritis was four things, joined a gym last year and started weight lifting to strengthen my muscles to take the weight off of my joints and put it on the muscle. When I joined a year ago, I could barely bench press 100 lbs and now I'm benching 250 lbs, leg pressing 1,000 lbs, I'm doing 800 lbs 15 times. I've lost 8" in my waist and 7 1/2" in my thighs but I've gained 22 lbs of muscle and lost body fat by almost 10%. 3 years ago I started Running, Pilates Yoga, and BJJ - Brazilian Jui-Jitsu. Pilates helped me build my core and Yoga taught me how to stretch. Running help me lose 55 lbs., I'm now 242 lbs at 6' hovering around 22% bodyfat (I know it's still too high and that's why I took up biking this year and I've already lost a few more lbs.). The BJJ helped me become more flexible, stronger, built up my cardio, moved my joints, and taught me how to defend myself. I've now moved up to working out with UFC fighting. Oh by the way I'm 54 yrs old. I'm not in the best shape of my life but prior to this, I had a hard time raking leaves in the yard for 1/2 hour. I use to walk in the house all hunched over in pain, unable to straighten. Now after a snow storm, I shovel my walk and drive way and then feel I can do it all over again.
 

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Try upping your intake of omega-3 rich foods or supplements. They are anti-inflamatory and should help the RA. Cycling is good because it does not stress the joints like running does.
 

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Discussion Starter · #12 ·
supercrank said:
Not to be a nit-picker, but I think you're referring to "sero-negative" RA. :)

I don't think he's pulling your leg since rheumatoid factor is negative in 20-30% of RA patients. I'm glad you're doing well-- one thing you should know is that RA is a systemic disease which can affect multiple organ systems, not just the joints. I'm not saying this to freak you out, just to let you know that if you experience any odd symptoms or decline in cycling performance not related to the pain and stiffness in your joints, it wouldn't be a bad idea to let your rheumatologist know. Take care, and keep riding!
Thanks for pointing out the correct term. I have to say that my eardrums have taken a beating from noisy machinery and loud rock-n-roll over the years...and the little wife thinks it's just a selective thing with me not hearing her;).
 

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Ra

I am soon to be 61 and have been diagnosed with RA for the last 7 years. I used to ride my 50th birthday present Tommasini but found that was impossible with RA. Way too much pressure on the wrists, elbows and shoulders. I had no choice but to switch to a recumbent and now ride a Lightning P-38. Here is a link to pictures.
http://www.flickr.com/photos/[email protected]/?saved=1
I used to frequent the RA boards but personally found them to be too much of a downer. I no longer participate on them.
Be careful about generalizing your condition. Yours is specific to you, mine is not to you. That is another way of saying to listen to your body, not so much to anectdotal ideas. I was one of the first males in Texas to recieve Remicade. I used it for 4 and a half years. I am now on Humira, which for me is much better than than Remicade, but that is for me.
My advice for you is pretty simple:
1. Find a good rhuematologist and do what they tell you. Find one even if you have to drive a hundred miles to get to them. Don't let a GP or internist treat you. You need someone with the specific RA knowledge who you like. You will be seeing a good one every 2-3 months, it is helpful to get along with them.
2. If you are having a RA flare it will be hard to ride. If you do, then ride at a easy pace. Fatiguing yourself will only make it worse.
3. Whatever treatment regime they put you on, follow it. To not do so is a guarantee you will be in a wheelchair quicker. I watched my Mother's RA take her from being a person to being a totally dependent person in a wheelchair till her death. This disease is not something you fix with aspirin.
4. When riding, if what you are doing is hurting a joint, stop doing it. You will cause damage and unlike everyone else whose body will repair itself, yours won't.
5. Read everything you can get your hands on and be knowledgable with your Doctor. It is your life, enjoy it and wake up every day with the intent of kicking RA's butt. Realize it is a war you are in, some days the battle goes to you, some days it goes to RA. The long term goal is winning more than losing.
Good luck to you.
Bruce
 

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Discussion Starter · #14 ·
Bruce in Texas said:
I am soon to be 61 and have been diagnosed with RA for the last 7 years. I used to ride my 50th birthday present Tommasini but found that was impossible with RA. Way too much pressure on the wrists, elbows and shoulders. I had no choice but to switch to a recumbent and now ride a Lightning P-38. Here is a link to pictures.
http://www.flickr.com/photos/[email protected]/?saved=1
I used to frequent the RA boards but personally found them to be too much of a downer. I no longer participate on them.
Be careful about generalizing your condition. Yours is specific to you, mine is not to you. That is another way of saying to listen to your body, not so much to anectdotal ideas. I was one of the first males in Texas to recieve Remicade. I used it for 4 and a half years. I am now on Humira, which for me is much better than than Remicade, but that is for me.
My advice for you is pretty simple:
1. Find a good rhuematologist and do what they tell you. Find one even if you have to drive a hundred miles to get to them. Don't let a GP or internist treat you. You need someone with the specific RA knowledge who you like. You will be seeing a good one every 2-3 months, it is helpful to get along with them.
2. If you are having a RA flare it will be hard to ride. If you do, then ride at a easy pace. Fatiguing yourself will only make it worse.
3. Whatever treatment regime they put you on, follow it. To not do so is a guarantee you will be in a wheelchair quicker. I watched my Mother's RA take her from being a person to being a totally dependent person in a wheelchair till her death. This disease is not something you fix with aspirin.
4. When riding, if what you are doing is hurting a joint, stop doing it. You will cause damage and unlike everyone else whose body will repair itself, yours won't.
5. Read everything you can get your hands on and be knowledgable with your Doctor. It is your life, enjoy it and wake up every day with the intent of kicking RA's butt. Realize it is a war you are in, some days the battle goes to you, some days it goes to RA. The long term goal is winning more than losing.
Good luck to you.
Bruce
Bruce- Thanks so much for your thoughts and insight. I think I got lucky and found a rhumey that's going to work out real well and she's only 10 minutes from home. I feel quite comfortable with her and the treatment she has prescribed has given me much relief...not a bad looking gal either:). My first consultation was with my GP and he was no help, his initial response was to "ride it out" and this didn't set too well when I was having a lot of difficulty walking!

I hear yuh regarding difficult to ride during a flare. I went nearly 2 months without setting foot on a pedal and it was driving me nuts. I took a short easy spin a few times during that time to loosen up and that's all I wanted to do because I didn't want to push my luck. I'm just about back to normal now, I did about 4 hrs today riding the MTB/dirt and I feel fine. I'm back up to doing 4-5 days a week between road and dirt and I might do more if time allowed. I'm pretty much down to age appropiate aches and pains I believe.

Thanks again for your thoughts and I hope you're doing well. Keep on riding!

Ricko
 

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UNRELATED but maybe a starting point.

I am not a DR.. nor do I have arthritis.... Hwever I do suffer from GOUT ( high uric acid) that crystalize in joints... and here is what I have found in my 48 years...

Foods, most we think are good actually affect my condition... Oat Meal, spinach, asparasass LOL, peanut butter, asprin.... so far most of these things would seem to be GOOD in our society... Heart food, strength food, protein food... etc... All are deadly for me, especially in combination...

So what is the point.... For those that have had negative test results, I would recommend a plain diet.... For those that have pets, usually the vet would recommend rice and ground beef.... for the animal to recover....

So start a bland diet, rice with some chicken.... for starts.... see if there is any relief...

Second point.... I take the glucosamine with MSM.... but we need more collagen... So how can you get it... do a google search on arthritis & Jello.... I know I just lost a bunch of ya but look it up.... So have some Jello ... Jello is Collagen....
Also do a google on Jello & pinapple (raw) ... come on just do it.... Again its a point of how food can affect you...
 

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shawndoggy said:
So we decided to see if my insurance would pick up a tnf inhibitor (Embrel, Remicaid, Humira), and low and behold this stuff that costs $1500 a month only costs me a $20 copay. WOOOO HOOO! So far I've shot myself up once and I'm feeling great (who knows, could be placebo effect).
I have PA (psoriatic arthritis) which is simalar to RA & AS. I've been taking Embrel for about 4 years. It was a God send right from the first shot. You'll still have bad days every now and then, but over all it'll never be as bad as it was. Good luck. Keep riding
 

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Bruce in Texas said:
I used to frequent the RA boards but personally found them to be too much of a downer. I no longer participate on them.
Dude, no kidding! The AS boards are all populated by people with crazy drug reactions, terrible disease progression, etc. That may be my future, but today is a lot better than that, so why depress myself over it now. I'll wait till then.
 

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shawndoggy said:
Dude, no kidding! The AS boards are all populated by people with crazy drug reactions, terrible disease progression, etc. That may be my future, but today is a lot better than that, so why depress myself over it now. I'll wait till then.
Pretty much the way I figured it would be so I'm staying out of those discussion boards, it never pays to hang with negative people.

Dang I had an enjoyable MTB ride this afternoon!

Ricko>>>basking in the endorphin afterglow:D:D:D.
 

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I stumbled across this forum in a search for Cycling with RA on Google - and thought I would join to see if I can find a couple of folks that have a head start on cycling with RA and possibly some pointers.

I was officially diagnosed just last month, but I have been dealing with this for the past two years. I refuse to let RA win; I got it, and now I am learning to deal with it, but it's not who I am, it's just what I have, I am a cyclist!

Like some have mentioned, I to have visited the RA boards but found them to be too depressing. So I have been tagging my posts on Google+ and other Social Sites with #CyclingWithRA in hops that more cyclist will come across them and post their rides and positive ramblings as well. If more of us post with this hashtag, then we might be able to show others (even non-cyclists) that there is a life living with RA - and turn the conversations to how to work with it instead of how it's beating us down!

https://plus.google.com/explore/cyclingwithra


Hope to see a few of you on the digital trails,

Chris
 

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Top down prescription treatment.

Don't screw around with the corticosteroids and other first line treatments.

Start with the TNF inhibitors (Remicade, Humira etc.)

Your insurance company will hate you for it but they are the most effective treatment for autoimmune diseases.
 
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