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crazyanimal
19th July 2010, 18:59
I just found out in the fall of last year that I have Fibromyalgia. It has taken up until about a month ago to find medication that helps life bearable. I am always in pain and will ride regardless. I do find that I get sore quicker then most people and that my throttle hand tends to go to sleep on me lots. I tried one of those crampbusters but the strain of holding the weight of my arm over the crampbuster made matters worse so I took it off. I've thought about a cruise control. Has anyone used one, how safe are they?

Does anyone else have this disease and what do they do to help make riding more comfortable??

I hope I never get to a point where I can never ride. They say it gets worse as you get older and I am only in my 30's and it is bad now. I swore that if I could never hold my bike up again that I would get a trike. LOL But I want to do all I can to stay on two wheels. And to stay on my sporty.

I'd love to hear if anyone else has this and how they cope.

Horse
19th July 2010, 19:15
I have similar issues, I find that handlebar and footpeg position make a huge difference. Also change your grip on a regular basis, it helps.

philidor1958
19th July 2010, 19:35
I have bad muscle cramps daily and use a combination of a throttle boss and a throttle lock (one finger push). This helps a lot. My cramps are so bad the other night I got one in my leg hopped out of bed and pulled my groin muscle. :(

crazyanimal
19th July 2010, 19:35
I actually just moved my handlebars down a bit the other day in order to prevent the stretching to reach. Hopefully this will help with the shoulder and back pain. I haven't had a chance to try yet because we got rain.

I am also wondering if a mini floor board would work for the knee and ankle strain?? Somedays, I am just great but other days I can't seem to find the comfortable spot for my feet. My knees ache and my ankles and balls of my feet hurt.

I haven't had a chance to change my seat from the stock one yet, I am sure that will help some too. Money, money money can fix anything. LOL

I am not sure if it is me either or not but I find the type of handlebars that come stock on the sporty 883 is also very uncomfortable. Gripping seems to give a twist kind of position to your wrists and over time that hurts too because it is not a normal position.

I do not want to spend too much on my bike because I do intend to trade up. Once I do trade up, then I will start looking for upgrades and customizations that work for me and my condition.

Any other thoughts for the time being are appreciated though.

TonyC
19th July 2010, 19:37
Sorry to hear that you have it. My wife has it and life can be hell for her. Besides the daily body pains, she has severe migraines as well. She's been to every pain clinic, hospital, etc, in the Boston area, and has seen the best there is. Nothing has stopped the migraines, and as far as the fibro, medication dulls the aches enough for her to cope. But, other than full on morphine, she has taken every single drug available. Her tolerance is so damn high, and at times has to detox from the medication for a few days, and thats not fun at all for her.

I ran hard when I was younger, and if you could smoke it, pop it, snort it, drink it or absorb it, I did it to the extreme. I look back and am lucky to be alive. I gave everything up when my daughter was born, and never looked back. Hell I havent even taken a drink in almost two years now, and I have a nice bottle of Grey Goose right on the counter. Life has been too enjoyable on its own for me, and I damn sure am not letting my daughter see even a hint of the old me. So my tolerance is so low right now, and I could get buzzed from looking at a percocet. I busted me toe the other day and didnt take a thing, as I would be out cold.

But for my wife, she can take them all day long. Vicodin, percocet, oxy, muscle relaxers, and all kinds of migraine medication is the normal. She even was on a opium derivative at one point, and it didnt work. You should have seen the pharmacist when we passed that perscription in. He looked at it, and then at us...and we cut him right off. Said "Yeah, we know what it is, and am not happy about it ourselves." So she has been through a lot with the migraines and fibro.

As for riding, it has to be a good day for her to even think about riding. The stock seats sucked for her. I swapped it out for a Corbin classic solo with backrest for her, and she was comfortable. It was firm enough, to support her, yet had some give as well. Plus you didnt get itch ass after riding all day. Maybe some of the people who added Road King shocks will chime in on how much better they feel. Good seats, shocks, and roads are the best starting point. Plus getting the right bars and grips will help. But, like I said, for her it had to be a good day no matter what.

Good luck with it, as it can be rough. I feel for you thats for sure.

crazyanimal
19th July 2010, 19:37
Oh I know those feelings. My condition also causes muscle spasms. I've had to stop my bike and get off on a few occassions because I was in so much pain.

What is the difference between throttle boss and throttle lock?? I've not heard of them before.

philidor1958
19th July 2010, 19:38
I have mini floorboards and my hips still hurt after about an hour. Works about the same as pegs.

philidor1958
19th July 2010, 19:42
Throttle lock and throttle boss

http://throttlelocklever.com/

http://www.kuryakyn.com/index.cfm/prodFam/Harley/go/Home.ProductDetail/IMID/36

crazyanimal
19th July 2010, 19:45
Wow, your wife has been through hell. I am like her and the meds only dull it some, but never truly gets rid of it. I am presently off work on EI right now because I couldn't tolerate my last job... actually my last job is what brought my condition out. I've had it for years and never knew it. I thought my lack of interest, tiredness and inability to get things done was because of laziness even though I wanted to do them, my body wouldn't let me.

The doc even has me on sleeping pills because I can't sleep. They are so so, still not a good nights rest but I'll take what I can get at this point.

I have days too where I have not gone out on my bike but then there are others days, I say "screw you fibro" and I get on my bike anyways. I had a hard time at first dealing with the condition because I was always a go and go type of person. Never sitting still. But I found out, I was making myself sicker. One day I was in so much pain that I was actually in the bathroom sick. I was down and out on the couch all day long. Hubby came home from work and knew I was not feeling well because I never sit and relax.

Along with the Fibro, I have restless leg syndrome and acid reflux plus times of depression. Those are the times that I need my bike more then ever. It may hurt when I get home but the fresh air and freedom help me unwind to a point. Even if my body is saying no, my mind is saying yes, and I can at least get some clearness to my brain. Sometimes it does help me sleep too if I get the fresh air.

Good for you for changing your life to make a good one for your daughter. I raised two children all on my own. "claps" for you.

Let your wife know that I am thinking of her. I know exactly where she is coming from.

crazyanimal
19th July 2010, 19:48
Thanks for the link. The throttle lock I think would be great for me. We do lots of highway riding or long trips. The throttle boss looks like the crampbuster kind of thing and even though it says you can relax, you still couldn't use all your arm weight and that tired my shoulders and elbows. I might just go ahead and purchase the throttle lock though. Thanks for the link.

Horse
19th July 2010, 20:58
One thing I find helps a lot is to keep my back straight, I use one of those nylon weight belts to help. I find myself relaxing into the bike sometimes and notice the cramping and pins and needles are worse. Give it a try, I bet you find the same thing. The right handlebar position is absolutely essential for long term comfort when riding with a dibilitating illness. I use bars I pretty much hate because they put my hands right where they need to be.

bud095
19th July 2010, 21:13
i can sympathies my wife has fm also bad stuff......bud

Folkie
20th July 2010, 16:22
A good friend of mine has Fibromyalgia and has been struggling for years to keep on riding a solo motorcyle, but has now had to give up on that and has had her Triumph Legend triked. That brings other problems though, as it now takes a lot more effort to steer.

crazyanimal
20th July 2010, 16:28
That might be something I may have to do down the road but I'll do all I can to stay on two wheels, at least for now. It is very tough condition and I find more and more people are being diagnosed. I know for years, the doc always said stress or depression or something or another.

TwitchDaddy
25th August 2014, 08:46
I have fibromyalgia too. Totally sucks! For me it is mostly in my legs. They cramp up and lock up so bad I can't hardly stand up. For me, on the days I kinda "feel" like they may not cooperate I don't ride. Days I do, I shift my foot and riding position often and make sure to take enough breaks where I can walk around a few minutes before headin on down the road. Meds have done some good but not consistently. My hands have been sort of numb for years as well. Used to be able to do very detailed things with my fingers, like a surgeon, but now even threaded a nut on a bolt is an act of God. All I can say is, no one knows you better than You. It takes some time to learn what your body is saying to you. Be alert to that, keep your passion for riding, do some homework as far as treatment goes and most of all, be safe!