Any fellow riders out there diagnosed with Fibromyalgia? How do you manage the stress of riding?
Yes. I try to manage with meds and continuing to ride, and then crash to recover if I need to.
If you look below this thread, you’ll see other related threads about Fibro.
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The docs say I have it. Some days are bad, most are tolerable. The key for me is to keep moving. If at any point in the day I stop it is difficult to get going again. Being still is much more painful than action.
I have tried several meds but the side effects were worse than the benefits.
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I know it may sound counter-intuitive but exercise will help reduce the aches along with a good diet. I feel worse on days I’ve had “cheap” carbs and too much sugar. And the more you exercise the less pain you have. Try something easier on the body like a not-so-intense spin class or use a program already on the bike. Build the muscle strength over time and it helps (along with meds) keep the aches at bay.
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I have it; diagnosed about 4 years ago. I find that riding often helps, but not the intense riding you do in a lesson. I need to be able to listen to my body as I ride. Take a break, walk for a bit, avoid the sitting trot. And some days? I don’t trot at all, depending on what my back is doing. Within about 10 minutes, though, I see a noticeable difference in the elasticity in my back and in my overall comfort.
Now, if there were a solution for keeping the chills away during the fall, or for hefting a saddle up onto a saddle rack, I’d love to hear them, because those factors make riding more difficult, I’ve found. I also have days when I’m just so, so tired that getting motivated is a real challenge. Once I get moving I’m usually okay.
I’m sorry you have to deal with Fibromyalgia, too.
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Diagnosed 12 years ago. I feel good when I ride, but am very tired after so I have learned to adjust my schedule accordingly. On the days I am tired when I get on I take it easy and listen to my body. Some days I just cannot ride and have learned not to beat myself up over it and just give in and rest.
An important factor with Fibro is getting good sleep. Some people need meds for that and I don’t mean ambien, it doesn’t give the quality of sleep a fibro person needs.
I take cymbalta, which is an antidepressant approved for neuropathic pain and it dials down the pain a bit.
There are so many things to try and help yourself with that I cannot list them all. Fibro Sucks!
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add me to the list!
I have to watch my iron, vit D, NO GLUTEN OR DAIRY, and really watch my stress.
PM me if you want to talk, its been a crazy ride.
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Officially diagnosed August 2016 but I knew something was wrong in 2013. I cannot take any medications to help as they interfere with my dvt so I do what I can to keep moving - walk the dogs, ride, yoga. Some days I’m fine, some days I crash. I hate it.
Yo, Sendenhorse! Your inbox is full, can’t PM you! 
Diagnosed 20 years ago. Still riding at age 58 and have made it to I-1 on a mare I trained myself. Some days are better than others. Ditto on limiting carbs and sugar. I eat “real food” almost solely (no meat, soda or alcohol) and go for community acupuncture 2-3 times a month. I try to get some form of exercise (riding, walking, gym, yoga) every single day. Only med I take is pamelor. Chin up, keep moving and carry on!
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I was diagnosed with Fibromyalgia at age 16. I am 26 1/2 years old now. Unfortunately, with all the top specialists and hospitals I’ve flown around the country to see for all my other medical problems, everyone agrees that where I live…up North, right next to Lake Michigan, is the worst for anyone with Fibromyalgia. I used to be able to ride in unheated barns and sit on crazy horses that would pull, buck, be super heavy on the forehand, etc. but I can’t due to all the trigger points. They are like rocks. I’ve gotten Botox injections all along my traps, scapula/shoulder blades, halfway down my back, suboccipitals; as well as around my skull, along my forehead, between my eyes and above eyebrows for headaches, and in my masseters and pterygoids for clenching/TMJ.
I can only ride horses that are super light, not hot, and don’t pull at all, which is difficult as I school 4th Level/PSG dressage and jump 1.20m. (I got crucified on another post in the H/J section. I spelled out all my health problems there after taking nasty comments after nasty comments.) And not to be spoiled, but I can only ride in very heated barns…though I ride in $$$$ northern IL, so most barns are heated now anyways.
I find that the barometric pressure from the lake makes a huge difference. I can feel my hands become “arthritic” and sometimes my hands and feet “pulse” or throb. (I look at an app from our local airport that tracks dewpoint, humidity, barometric pressure, etc. and have found trends over the years.) The worst times for me are the transitioning temperatures of Spring and Fall…between 45-60 degrees and then falling at night. Once it stays cold, or super cold, I’m fine. Same thing for 70 degrees and above. However, high dew point kills me. I remember vacationing in the Riviera Maya area two years in a row and I just couldn’t breathe because of the dew point being in the 70s with the high humidity. It felt like an anaconda was squeezing the breath out of me. When I go to Las Vegas or Southern California, I feel fantastic in the dry heat and less temperature and dew point fluctuations. I was thinking about a trial period of staying in a hotel for a month to see how I feel out there vs here.
From rheumatologists, I’ve tried every medication for fibro there is except Lyrica. Even natural stuff doesn’t work, as I am in to homeopathic ways for my other health problems. I know someone who was a hospital administrator, very smart lady, who has been suffering for 20+ years…she had terrible reactions to it. Like Parrotnutz, I take Cymbalta. Also agree that sleep is super important. I flare up if I don’t get a good night’s sleep as my body hasn’t had time to recover and repair. (I suffer from insomnia and sometimes my cortisol levels get reversed.) For sleep, I take 2mg of Lorazepam (Ativan), 6 mg of specially compounded Melatonin, 5-HTP, and Magnesium.
Exercise is also crucial. I was an exercise nut…was set back when first diagnosed with Chronic Fatigue Syndrome at 15 but got through it by following a protocol from a book called “From Fatigued to Fantastic” by Dr. Jacob Teitelbaum. He is the foremost expert on CFS and Fibro. Though he cured me of CFS in three years, he hasn’t been able to help rid of the Fibro. He started taking consultations 7 years ago. Within the past decade, we’ve had 4 consultations with him where he does a complete health history…you better have immaculate record keeping–I thank my dad for that and the tubs of file folders we have…and total blood workups for things you’ve never even heard of. After he reviews your blood results, he talks over a game plan with you. He lives in Hawaii, so it’s a phone consultation. Insurance doesn’t cover it and expensive ($700), but it’s worth a try for anyone who’s interested. He has written many books, and any profits from his line of his vitamins and supplements goes to charity. Website is www.endfatigue.com I’ve found a great PT (after going through 8 morons) and had him for the past 5 years. He showed me exercises to do…he was a former competitive bodybuilder…to strengthen weak areas to help the Fibro. I’m also hypermobile, so I need stabilization. Before I got super bad heart problems and had to stop exercising for the past year, I was lifting heavy weights and working out 5-6 days a week. When I was leasing a horse, I cut back on my gym days and time, but still went occasionally, as I was riding 6 days a week with two lessons a week and hacking the rest.
If I can help anyone as far as my Dr. Teitelbaum experience and if anyone wants more info, I’d be more than happy to share. PM me.
bringing_up_baby and others…since the quoting is not working .
The barometric pressure changes is a big one with my Fibro! And like “bringing” the change of seasons really affects me also…with the changes of weather all the time.
It has been in the 40’s here and is dropping rabidly now so I am in a flare…also supposed to snow…all of this affects the barometer and ME!
Cymbalta, for me, just dials down the pain, doesn’t get rid of it, of course. I will not take lyrica either due to side effects others have gotten.
My doctor, for sleep, prescribed Topiramate which is a migraine med first. He says it gives you a much better quality of sleep versus something like ambient which he said does not.
I may be in touch with you “Bringing” to see what supplements you take.
I don’t have fibro but I have nerve damage that apparently presents itself very close to fibro - except that it isn’t symmetrical. Apparently fibro symptoms are usually found on both sides, for example - both knees. Mine centres around areas damaged in a car accident. But wanted to add that I finally got amazing sleep when I started Elavil/amitriptyline - it is also used for insomnia. I also take Cymbalta which layered with Elavil significantly decreased my daily pain - game changers for me! Cymbalta is now available in a generic and in Canada is $100 cheaper - bonus if you pay for your own meds.
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I’ve been living with fibro for almost 20 years, I’m also borderline CFS and have problems with muscle spasms. I have found for me the best combination is to keep my weight between 155-160lbs (I’m 6’ tall), dramatically limit starches (no corn, potatoes or low quality bread or pasta), walk a minimum of 1 hour a day, take a muscle relaxant fairly regularly and try to go get to bed by 10 every night. As needed I also take epsom salt baths and use epsom salt lotion (homemade) for the muscle spasms. I have problems with side effects from NSAIDs and the usual fibro medications (especially Lyrica). In the winter I try to give myself 2-3 times longer to get warmed up and sometimes that means I go for a hike before I ride. The biggest problem for me is “fibro fog”, sleep and protein help but not always. When it’s one of those days I stick to flat lessons and don’t even try to remember multiple commands. My trainer is really understanding, she has MS and gets the ups and downs. Most importantly, don’t be too hard on yourself, it’s too easy to get depressed and upset when your body can’t do what you want it to do. Especially when you’ve done it before.
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I learned today that this is likely what’s going on with me. Reading all of this is daunting.
I’m sorry to hijack - but have a question to add.
I’m hearing a lot of you are talking about exercising regularly and consistently. Where my body is currently, there’s a significant amount of inflammation in my muscles to the point that the damage is having a hard time healing. My doctor has said I need to stop exercising and allow my body the time to rest and heal, while I start on some things to help my system. Does this sound normal?
Welcome! This is an ongoing discussion, so you are not hijacking.
I think each case is unique, and the way a doctor approaches treatment is tailored for each person. IME, fibro can flare in different ways: pain, exhausting fatigue, muscle soreness, swelling, joint aches, and so on. And each doctor has their own experience of treating a person with fibro.
IME, I seem to do better if I pay attention to what my body needs at any time. When I am doing pretty well, I can be pretty active. When I have a flare, I have to back down on the activity and increase the rest and recovery time. Pain gets in the way of restorative sleep and rest, IME. So getting real sleep is essential for me. (I take a magnesium supplement that helps with several of my symptoms.)
So if you are in a state of inflammation, and your doctor tells you to rest so you can heal, that’s probably a good idea. You will find, through trial and error, or by trying suggestions you learn as you come along, what your body does during flares, what possible triggers are, and what steps you can take to support your body. Following with your doctor’s suggestions is a good place to start. You may want to keep a journal or diary to track your symptoms and see if you find a pattern. If resting makes you stiffen up and causes more pain, check in with your doc, and see if gentle stretching, yoga, walking, or swimming/in water movement might work better.
I can usually tolerate a soak in a hot tub. But as much as I used to enjoy a good, therapeutic massage, I usually end up with muscle spasms and tightness (since developing fibro), so I no longer have body work. For others, gentle body work, yoga or Pilates is helpful.
Feel free to PM if you’d like to chat.
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Thanks keysfins - I appreciate the encouragement. I feel like I’ve been going crazy these past few years. I haven’t slept in ages (like really slept, probably not in 2 years or more) - I’m up maybe a half a dozen to a dozen times a night due to pain / discomfort. I’ve been feeling like my husband thinks I’m just whining or something, like it couldn’t be this uncomfortable. Sigh.
How long did it take for you all to get properly diagnosed?
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I had a barnmate who happened to also be my rheumatologist. So when I started noticing symptoms, I wasn’t thinking rheumatoid arthritis or osteoarthritis, because my “locations” did not fit. So I went to see my great rheumatologist, within a few months of when I noticed increasing pain points. And then the fatigue became the major issue for me. I could tolerate the pain part, but got really frustrated with the fatigue.
I still will nap when I can, and when my body needs it. There are times when I have flares and I will sleep for nearly a solid day. Sometimes it takes two full days to deal with the fatigue. If I know I am going to have an extra active week/weekend, like a show week, I plan and schedule at least two recovery days after the event. And I don’t feel bad about doing that, it seems to work for me.
One other tip that I discovered for good sleep: I have a long pile sheepskin pad on my bed, under the bottom sheet. It is two pelts end to end, and is probably 24" x 70", just right for body size. It is not the short fibers like you usually see for sheepskin, it has long fibers. Not sure why it helps, but it made a huge difference in being able to sleep through the night. Otherwise I was waking up with hip, shoulder and knee pain. Enough to wake and be aware of it, groan and try to find a comfy position. The sheepskin has really made a noticeable difference in my sleep quality, YMMV.
Lawson Sheepskins is where I bought it. DH decided sheepskin was pretty comfy for sleeping temperature, too, so now we have several. There’s always one clean and fluffy one for when we wash one from the bed. (They take a few days to air dry after washing with Melp.) It may seem spendy, but I consider it a good investment for restorative sleep. I have one that is five years old now and still looks and feels like new.
The ones we have are the long pile twin two sheepskin rug:
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Have had fibro for 20 years. Diagnosed by 2 different rheumatologists. Make sure you get diagnosed by rheumy, not other docs, because otherwise tends to be a “we don’t know what is wrong with you so…” You do NOT want a diagnosis like that. Fibro has VERY SPECIFIC diagnostic elements. Only a good rheumatologist familiar w/fibro can properly diagnose.
I agree with Luceride. Do not stop moving!!! and stay active, without over-doing it. Everyone I know who took the designer drug and sit in recliner a lot ended up in very bad shape. Esp. anyone who went on opiods, which doesn’t help fibro pain anyway. Have seen a lot of good folks end up in rehab due to that.
You may want to have a sleep study done. Lack of restorative sleep is a signpost of fibro, but can also be contributing by way of sleep apnea, etc.
The good: Fibro is not progressive, like Rheumatoid for instance. But it IS a life-long “management” problem.
I do know a few people who were cured. One is my organic vegetable grower who I met thru my community sponsored agriculture program. There was a time when she was barely able to walk up 4 stairs to her front porch; now she is growing / farming full time.
I will tell you that, according to my doctors, I am doing about 85% better than all their other patients. Why? Keep active and be extremely careful with diet. It is everything. If you have attendant IBS, use Dr. Sue Shepperd’s FODMAPS diet. Many hospitals thruout Europe use it. You can eat a lot of stuff…it’s not real restrictive but you must avoid the stuff she says to avoid. It has been a godsend to me.
Limit junk food, carbs, sugar, etc. Lean meats like ground turkey, wild caught salmon, lots of vegetables. If I eat badly for 2 days I’m unwell for 7 days afterwards.
If your doctor says to take time off, at least continue to do WALKING or SWIMMING. Sitting around makes me very much worse, and stiff.
It may be useful to keep a journal for a few months, so you can “learn” what triggers you (activities, foods, sleeping patterns, medications). Only way to know YOUR body is to know your body…none of us are exactly alike.
I do go through periods where I feel frustrated but I have learned to concentrate on all the things I CAN DO, things I can still do…and the things I can’t do anymore, well, I just wiped that slate clean and don’t refer to it anymore. Its off the table and I had to let it go. This is essential, psychologically…at least it was for me.
It took me years of NSAIDs (and damage to my stomach) to learn that a tylenol in the morning when I am feeling badly seems to work best on me …the other stuff doesn’t work. But I really limit all that stuff in general.
Best luck to you!
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This helps me a lot, too! I make my own 2 cups epsom salts, 1 cup baking soda, a few drops of lavendar essential oil or whatever you like. The magnesium in the salts really is absorbed and used by your muscles.
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