For many years i have been dealing with crippling pain. Some days im crawling into bed because i can hardly walk, or im having to eat dinner in bed because i cant sit in a chair. After many years i finally got a diagnosis of fibromyalgia. FINALLY an answer. I am wondering how people deal with everything. I feel like now that i have started medication im in more pain then ever, i have more headaches, i tire very easy, and the idea of going to the barn to do chores is just mentally exhausting. I tried cymbalta but failed that medication. We switched medications to prozac and mobic i believe its called for pain.
I’m wondering what people do to deal with the pain and what medication they take. My horses don’t mind the little vacation while i get my things in order, but i don’t want them to enjoy it to much! haha I need to get back in that saddle!
Less stress, more sleep, more exercise, regular routine. And move somewhere with fewer weather fluctuations (HA!). This is a good list, too: http://www.webmd.com/fibromyalgia/guide/fibromyalgia-tips-for-coping
Many meds don’t work for me. I tried a fairly high dose of Lyrica, which helped with the sleep for the first year or so, but then stopped working (and was utter hell to get off of). NSAIDs don’t really do much for fibro (so I wonder why your doc put you on Mobic). When the pain is bad, tramadol with a high dose of acetaminophen takes the edge off. I’ve read that some people have good success with muscle relaxants like cyclobenzaprine but I haven’t tried it yet. If all else fails, try pot.
As much as it hurts and as exhausting as it seems, you need to keep moving. You need lots of gentle exercise (walking, swimming, yoga, riding horses, etc). You need to push yourself. I see too many fibro sufferers that don’t push and end up laying around and getting too heavy and too depressed, which makes things much worse.
I also have fibro. It’s a nasty business and don’t expect things to get better for a while - you’ll spend a bit of time figuring out what works for you, how far you can push yourself, learning to deal with the pain. But it WILL get better and you will deal with it, because you have to.
It’s been about 4 years since I was offically diagnosed and now things are starting to come together. Currently I am on a high dose of lyrica, a high dose of celexa, Tylenol 3s as needed, sleeping pills as needed and muscle relaxants as needed. My medications get adjusted every few months or so, sometimes going up, sometimes going down, sometimes changing entirely. It’s a process.
I agree with islandhorsegirl that you do need to keep moving, even if it’s just taking one of your ponies out for a five mminute walk ride. Do not give up horses! “Pony Endorphins” as my doctor and I call them, are invaluable.
Honestly, what worked best for me was getting a dog. My horses are boarded out so I didn’t have the routine of caring for them, and my cats and rabbits don’t have the same impact. The dog makes me go for walks (or limping shuffles, sometimes), or at least play fetch. She is snuggly and warm and huggable. And she always makes me smile, no matter how much pain I am in. I wrote a blog post about it: http://fitdogblog.blogspot.ca/2015/04/fibromyalgia-and-dogs-you-can-always.html
As riders, we often have the “get back on the horse no matter what” attitude towards everything in life. This is not reasonable or responsible. Absolutely you have to push through your pain but do it in moderation. There is nothing wrong with needing a rest, be it 5 minutes or a day.
I try my best to stay as active as i can, but at the end of the a long 8 hour work day its not that easy. Yesterday i walked a little bit during my lunch to go get some food and when i came back i was exhausted. I was falling asleep at my desk at work. My knees were in incredible pain. I know there will be an end to this amount of pain. I am just patiently waiting for that day.
Im going to suggest lyrica to my doctor and maybe a muscle relaxer. Right now im just playing a game with different medications to control my pain. Between co pays for my doctors appts and the money for my medication im going broke! I was hoping this was a “oh you have fibro this medication will do the trick” not in the least bit!
I start my day, every day at 5 am going to the barn to feed and tend to my five horses. Then i go to my full time job where im on my feet 80% of the time. Then after that its back to the barn to tend to the barn. Its going from cleaning stalls to mowing pastures to fixing fences. Then hopefully i have enough energy to fight my crazy kids. I miss riding. I miss being able to get my horse and ride my troubles away. One day i know ill be back in the saddle.
Weekends are easier for me because i can just go and play with my horses before the pain sets in. Tomorrow starts my knew medication plan so im hoping that will relieve some of pain at least for a few days so i can enjoy something other then my bed at the end of the day!
You sound run off your feet and the level/type of exercise you’re getting as part of your daily activities is too strenuous. If you cannot make lifestyle changes (well, even if you can), try tweaking your diet (if you haven’t already). Cut out caffeine, sugar, wheat and even dairy (not all at once so that you can see what works/doesn’t) and see how you feel. You could also try avoiding typical arthritis trigger foods like nightshade plants. Eat less red meat and more oily fish and veg…and do not eat processed food.
Oh and as much as I love it, alcohol is horrid for my body pain. Don’t drink at all!
If you’re not already, you need to see a rheumatologist experienced with treating fibro.
If you pm me your email address I will send you an ebook about a horse rider with fibromyalgia. That offer is for anyone who would like it.
Fibro here, too. I think it manifests differently in each person, and symptoms vary over time even in the same person! I have an excellent Rheumatologist who is also a dressage rider; we are barnmates, too. I know she “gets it” when I describe how I am doing, and what level of activity I WANT to be doing.
I tried Lyrica, but all it did was make me crave carbs, did nothing for pain or fatigue. I wanted cookies, brownies, cake, anything carb-y. Then was so disappointed with the resulting weight gain. So we canned the Lyrica after a six month trial.
Currently I am taking Tramadol for pain, plus Celebrex if I am having a bad pain day. I feel like my pain is manageable. My main issue has been fatigue. I am great in the morning, lose steam in the afternoon, and will nap for a couple of hours if I have the chance. It does not disrupt my sleeping at night. When I have to work through the afternoon, I have another RX that I use to keep the energy up.
I am fortunate that my doctor is also in research. So I learn from her what the latest findings are about Fibro, pain, joint problems and autoimmune issues.
I agree that it sounds like you have more things to do than ability or energy to do them. It just adds to the fatigue and pain, as well as frustration and even depression. It took me quite a while to accept that I had a new “normal”, and that I had to honor my body’s needs above all.
If you haven’t read The Spoon Theory, here’s a link. Although written by a person with lupus, it fits with Fibro and other chronic, “silent” conditions.
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
I have been trying to find a happy medium with everything. I have the chance to nap on my lunch break, so i have been taking a quick 30 minute nap which helps so much. Then i nap when i leave work before i head to the barn. I have learned to love naps haha. My sister is now home from college so she has been coming to the barn with me to ride my horses. Which is extremely helpful because they are getting worked and i get to see my horses improve from the ground. As much as i would love to be the one riding, i have accepted that i cant do that right now.
The last few weeks have been a great learning experience for me. I have been learning what my limits are, what i need to do to stay positive. (which has been making my desk look happy and fun!) I have been changing my diet, slowly. Adding more protein to keep my energy up and putting those brownie cravings to rest!
I will have to look at the spoon theory. I have not read that yet! Looks like a good read!
Sounds like you have a positive attitude, and that goes far when dealing with a chronic illness.
I was super fortunate to deal with mine in a completely holistic method. I woke up in the middle of the night once when I was 19/20 (diagnosed at 14), puking my guts out from all the medication. So I quit. Cold turkey. Then I started the long process of getting back into shape. Before that though, my life was hell. I would have muscle spasms that dislocated joints, I was always in pain, totally exhausted. Doctors predicted wheelchair before 30.
I cut out refined sugars, meat and grains for a couple years. Each of them separately, never all at once. Broke some bones, dislocated joints, fell and hit my head far too many times from exhaustion. I took no medication other then aleve or tyenol ones.
Now though, I ride my extremely difficult horse 5-6 times a week. I run anywhere between 15-25km a week, do spin classes, lift weights (and heavy ones at that) 3 times a week, and do yoga. When the dogs are with me, they get 4 long walks a day to deal with a condo lifestyle. Basically, even my day off in the week is an active day off. I am on the go from 5:30am until 10pm. Oh, and I am in the army.
Obviously I was young when I was diagnosed, and maybe I had it, maybe I didn’t. I was told I was a classic case, and my former doctors have since decided I am a miracle. Maybe I am. But I know for a fact, you need to be active. And it really sucks the first couple years that you are starting to be active. A young woman at my former barn was diagnosed as well, and she decided to attack it rather then anything else. She is fitter then me.
I too was told I have fibro. And as time passes I’m feeling better and getting to what is to be the real root of this.
Then found out I have MTHFR (gene mutation which can cause fibro like symptoms). Improved my methylation, and felt much better!
Then found out auto immune thyroid hashimotos. Worked on getting high thyroid antibodies down, and felt better.
Then finally just recently got a Dr to run iron ferratin panel, after being told I didn’t have problem, it would show up on CBC. Couldn’t give me reason for my fatigue. Now I know that I am high iron, which causes fatigue just like low iron does. This might be related to MTHFR (broken record here, but its root to so many health issues).
Refined sugar, carbs, processed are enemy and eliminated those many years ago. Felt better. Yes, definitely know what your limits are and say no. Don’t eat things that will cause you to suffer more.
[QUOTE=AMWookey;8302313]
I was super fortunate to deal with mine in a completely holistic method. I woke up in the middle of the night once when I was 19/20 (diagnosed at 14), puking my guts out from all the medication. So I quit. Cold turkey. Then I started the long process of getting back into shape. Before that though, my life was hell. I would have muscle spasms that dislocated joints, I was always in pain, totally exhausted. Doctors predicted wheelchair before 30.
I cut out refined sugars, meat and grains for a couple years. Each of them separately, never all at once. Broke some bones, dislocated joints, fell and hit my head far too many times from exhaustion. I took no medication other then aleve or tyenol ones.
Now though, I ride my extremely difficult horse 5-6 times a week. I run anywhere between 15-25km a week, do spin classes, lift weights (and heavy ones at that) 3 times a week, and do yoga. When the dogs are with me, they get 4 long walks a day to deal with a condo lifestyle. Basically, even my day off in the week is an active day off. I am on the go from 5:30am until 10pm. Oh, and I am in the army.
Obviously I was young when I was diagnosed, and maybe I had it, maybe I didn’t. I was told I was a classic case, and my former doctors have since decided I am a miracle. Maybe I am. But I know for a fact, you need to be active. And it really sucks the first couple years that you are starting to be active. A young woman at my former barn was diagnosed as well, and she decided to attack it rather then anything else. She is fitter then me.[/QUOTE]
With you on holistic as the solution. Staying active is very important, just as recovery period and not over doing it.
Sounds like you’ve got it going on!
I know this is an old post but have you also been correctly lyme tested?
