Asyrol

Back in April 2006, I got my first bike in an effort to get a little more in shape and lose a little weight. I've got almost a dozen diagnosed conditions, though the major four are migraines, fibromyalgia, endometriosis, and a lupus-like autoimmune disorder which causes fatigue and joint pain and swelling in my hips, knees, feet and hands (among other things). I was doing pretty good through the summer health-wise (few migraines, little endo pain, moderate join pain) and was riding a few times a week. Then in July I had a huge flare of the pseudo-lupus and was barely able to walk, let alone ride my bike. It took me most of July and part of August to start to feel reasonably normal, and by that time I was out of the habit of riding. I got out on my bike a couple of times after that, then it got cold and I started having some serious endometriosis pain.

All of that is just a long winded and detail rich way of saying that this winter I have barely been on my bike. I had this grand plan that I would steal my boyfriends trainer and I would go back to riding! Every Day! In the comfort of my own home, what's stopping me?! Except it's been 4 months and I've been on my bike maybe a dozen times. I've tried to start up again and I can barely mange 15 minutes a day with almost no resistance.

For those of you living with chronic pain conditions, how do you stick with it? Stay motivated? Get back in the habit after a long hiatus?

Thanks in Advance

IronMac

Welcome back Asyrol! Hope someone's able to give you some decent advice here. Good luck!

Az B

I suffer from a MS-like autoimmune disease. The doctors aren't sure what it is, but it affects my thyroid and my nervous system. The migraines are drastically reduced with regular exercise and proper diet. The other symptoms are dealt with either through drugs or simple stubbornness. Exercise apparently helps quite a bit, which is unfortunate because the problems make it quite difficult physically and mentally to exercise regularly.

I started mountain biking last September. It's so much fun, I don't notice the pain as much. On the trainer, indoors, I tend to focus on the pain and like you, can barely manage 15 minutes. Outdoors, I have to stop after an hour and half because I can't even hold the bike up anymore.

So while I'm not suggesting that it's all in your head, I am suggesting that your head controls the body. When your head is happy, your body will be happier.

Good luck with your issues and I hope you find some answers that work for you.

Az

Asyrol

huh.. that's a very interesting theory - now that you mention it I DO notice the pain a lot more when I'm inside, even when I was trying to watch TV while riding to keep from getting bored. Maybe I'll just try to keep up with my 15min a day until the weather allows me back outside, and see if that helps.

Thanks!

Roody

I can't give you advice based on personal experience, but I wonder if you should try to find some professional help? Think along the lines of a sports medicine doctor, physical therapist, occupational therapist, or even a personal trainer with experience helping with chronic pain. A rheumatologist or a physiatrist (a physician specializing in Physical Medicine and Rehabilitation--"PM&R") might be able to provide a better overview of the relationships between exercise and your own medical conditions and supervise an exercise treatment plan.

I think my first choice would be the physiatrist, since she/he would be working closely with PTs and OTs. Your insurance might pay for this.

good luck, and I hope this helps.

Asyrol

Thanks for the idea - I did briefly try a stint with a gym and a personal trainer, but it's very difficult (and expensive) to find one that has experience with my sorts of issues... seems only healthy people go to gyms, go figure eh?

My doctors are always telling me to try and exercise as much as possible and how it will assist with lessening my symptoms, and when I'm feeling healthy and able to keep up with riding it does seem to help. My issue is I guess more one of motivation and knowing how much pain is "ok" to ride through, and how much is enough to take the day off.

pat5319

Set some goals; Try picking an organized ride coming up in, say, late spring. And set up a plan to get in shape for it, starting out with baby steps, and a lot of mini and/or intermediate goals, like riding on the trainer for 5 or 10 minutes with very little resistance, gradually bringing up the time, then working on your "spin" (pedal rpm) and then bring up the resistance gradually but not necessarily during the whole session or on every work out, vary what you do. When it's warm enough to go outside, gradually build up there too, ride the flats 1st easily etc find some books at the library written by ex racers Carmichael, Hinault, Lemond etc. And keep in mind how good the bike has made you feel and that EVERY time you can get on it even for a few minutes is a VICTORY!!!! Don't get down on yourself if miss a mini/intermediate goal you are after all only human and have the added burden of having issues that ARE beyond you control. Finally remember, given that fact you are trying puts you head and shoulders above the majority! I have a lot of "stuff" to deal with too. Don't feel like the Lone Ranger as far as being motivated, I think that everyone has his or her moments.
Set some goals; Try picking an organized ride coming up in, say, late spring. And set up a plan to get in shape for it, starting out with baby steps, and a lot of mini and/or intermediate goals, like riding on the trainer for 5 or 10 minutes with very little resistance, gradually bringing up the time, then working on your "spin" (pedal rpm) and then bring up the resistance gradually but not necessarily during the whole session or on every work out, vary what you do. When it's warm enough to go outside, gradually build up there too, ride the flats 1st easily etc find some books at the library written by ex racers Carmichael, Hinault, Lemond etc. And keep in mind how good the bike has made you feel and that EVERY time you can get on it even for a few minutes is a VICTORY!!!! Don't get down on yourself if miss a mini/intermediate goal you are after all only human and have the added burden of having issues that ARE beyond you control. Finally remember, given that fact you are trying puts you head and shoulders above the majority!

akarius

Are you on any drugs for the pain that you experience? If so they may cause you to feel tired and take away some of your motivation.

donnamb 

Asyrol, I have endometriosis, and riding has greatly improved my symptoms. Moderate to heavy exercise will often do that. I bike commute no matter what, I just go slower and on flatter routes when I'm in pain. No heroic attempts at speed or tighter corner turning when I am in the worst of it. It actually distracts me from the pain long enough to get home from work without being in agony. I usually take half of one of my strong pain killers, along with ibuprofen and an herbal supplement containing cramp bark. It's enough to make the trip bearable without feeling impaired. Then I tank up when I get home.

Asyrol

I'm actually taking a number of medications: hormones, anti-inflammatories, preventitive migraine meds, acid reducers, B12 (I'm B12 anemic which adds to my fatigue) and a multivitamin, plus pain killers when needed. All in all about 12 pills a day. I never thought that they might be contributing to my fatigue, since generally speaking without them I'm in a world of hurt and not able to function normally.

You do make a good point though, it's the fatigue and motivation that get to me the most I think. When I hurt to much to ride, there's not much I can do. When I'm "tired" I still feel like I should be out riding, because it's not like I'm in pain, just don't have any energy.

Perhaps the next time I see my doc we'll go back to discussing my energy issues.

Asyrol

Wow, I'm glad to hear that someone is able to do this. I did find that when I was riding regularly in the summer that ALL of my symptoms weren't as bad, including the endometriosis. However, when it's flaring up I'm generally exeedingly nausious and doubled over in pain - barely able to walk let alone ride. I'm at a point where I'm seeing my GYN on the 25th to discuss a hysterectomy (previous surgery has helped for a little while, but has proven ineffective in the long run).

I'm not really comfortable riding in traffic to begin with, let alone in traffic with painkillers in my system, but it's a good idea for riding the trainer if I'm having an especially rough day.

donnamb 

Asyrol,

One thing to pep talk yourself about when you're fatigued (and I sure do know what you mean by that) is that even a short, whimpy ride will do you a great deal of good and even help alleviate some of the fatigue. My mom has neuropathy, fibromyalgia, and Reynaud's, and she also finds that making herself get out there and move helps a great deal. I always have to remind myself that I am not going to cause myself an injury exercising when I hurt. It'll hurt whether I move or not; moving will help me in the long run. If you've got a trainer, use it by all means. I don't have one, so it's outside I go.

As for the rest, I will send you a nice, long PM in the next couple of days.

Denny Koll

I lived in chronic pain for several years, due to a back injury. I agree with this post. Get out and ride even if it's 5 minutes...just get out and get a routine going. Try not to let the pain control your life as much as possible. To me, if I didn't get out the whole fatigue snowball would start rolling and I would feel crappier than ever...so I learned to push myself out the door.

Asyrol

Thanks!

I agree with you and the other poster that even if I can only do 5 - 10 minutes it's better than doing nothing. That's what I've been pep talking myself with this week and I managed to ride for 15 minutes 3 times this week. I'm hoping that I can force myself into a habit that'll get me through the rough patches.

I look forward to your PM

urban rider

I have back pain. I was also taking pain pills, muscle relaxers in addition to takin blood pressure meds and diabetic medication. I didk not realize how tired it was making me until I stopped taking the back medication due to the shots in my back. Anyway I am not as tired because I discontinued the pain meds and muscle relaxers. I have had physical rehab. I ride as much as I can because the benefits far outweigh the negatives. Riding the bike makes me feel good and it lessens the pain.

bullethead

Over the years I break my pain down into two types. The kind that is errorneous or Phantom, and the kind that is indicative of something really wrong. Both vary in intensity. Both are REAL. It sounds like you may have both types, though I am not a doctor. I try to get off my butt when I assess that my pain will do me no harm from my riding. I take it easy when the pain is from a condition that indicates that my riding will do me more harm. Sometimes when the pain is bad, or I know it will get worse from riding, I don't ride. Sometimes for long periods of time. We all must just do our best, and some are braver than others. It sounds like you have guts. I wish you the best.

Mr. Gear Jammer

Well hello, i too am in severe pain. I endure it every day, 24 hours a day of the year. Infact i am back pain right now. I block it out, listen to music while riding. Keep telling my-self that doing this will make me live 10 more years. I have had: Samonilla posioning, Lyme Disease, West nile. I have ashtma and suffer from depression as well. I get injured a lot. My knee's swell up really bad too. Yet i managed 3,000+ miles last year. I ride on my trainer. No wind, you can stop when you want to. Start out 15 minutes a day for a couple times a week. Then slowly add to the bike riding time and ride little bit more and more every month. I hope this helps.

Mike