Sleep!! Has to be a huge priority. Weather is a trigger for me too. Mint peppermint…affect me badly. Corn too. Salmon, anything with ginger, venison, vegetables…I do smoothies with fruits and veggies. Eating well helps. Sleep is biggest one for me though. Have a super soft bed, quiet neighborhood…use Advil PM every night, no other drugs. Pared down my life to only what really matters, even things like my closet and belongings. One awesome young horse that doesn’t hurt my body to ride…having the right width(last horse too wide) and gaits. Having fibro made me evaluate everything.
Morgan: How do you make your epsom salts lotion? Thanks & well wishes!
I remember the H/J thread, the one you complain of being “crucified” on. You have deleted most of your posts there.
You mentioned how many narcotics you had to take just to post on the forum at that moment and opined that no one understood your pain.
Many of us have pain. and understand it quite well. People did not understand why, when you are unable to work or attend school, even at your own pace, you said you had imported a $35,000. “therapy horse” (that had to be schooling PSG and be able to jump 4ft), while at the same time, you had a “go fund me” (or some such online request for donations) and were asking local churches to help with your medical expenses.
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Magnesium is a significant help to me. I take Jigsaw Magnesium SRT (sustained release), two tablets am and pm. More if I need it, for soreness.
I don’t take any Rx, I take Natural Calm Magnseium. Gabapentin is the devil and I’d rather be sore. Oh, and I work 50 hrs a week and ride 4-5x
People may understand pain, but they don’t understand what it’s like to have approximately 12 rare, unsolvable medical problems that I have to endure all at the same time since I was 15 years old.
And if people can post on GoFundMe for medical bills and financial support, why can’t I? People post on there to fund horses. One person in my area raised about $40k+ or so just so she could have the opportunity to compete in Europe with two horses for three months. If that’s not spoiled and ridiculous, I don’t know what is. That’s shameful. Everyone always says on here “if you can’t pay to play” then you shouldn’t have a horse, shouldn’t be showing, etc.
Bunch of busy-body hypocrites, you lot.
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I deleted my response. It doesn’t help matters to lose your temper with an anonymous person, which is what I did.
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I also struggle with fibromyalgia and am actively riding on the days when I have the energy. I tend to crash 1-3 days per week, during which I sleep off and on during the days, and move very little. In between, I just “power through” the days. I work part time now, which is the only way I can ride and have crash days. If I compete, it takes me 1-2 days to recover during which I sleep, sleep, sleep.
Insomnia at nighttime is a problem, however. I can neither fall asleep nor stay asleep without medication. Melatonin does nothing for me. Over the past few years,I have taken trazedone which is non-narcotic and it works well for me. I am going in for more blood work tomorrow and will likely go on a combination of Lyrica and Cymbalta. I am tried to be stoic about the pain but it has taken over my life. And I want to enjoy life and be happy about who I am.
The pain is relentless, and especially bad during flare-ups, which occur when I push myself too hard and/or when I am under a great deal of personal stress. Most of my pain is spine, although I do have joint pain, especially in the knees. When I awaken, I am so locked up that I can hardly get out of bed. As is expected, the pain subsides with movement. I get into a cognitive fog sometimes that is embarrassing when I am around professionals, patients, and acquaintances. Those close to me have grown accustomed to my poor memory.
My problem (well, one among many) is that I do not have a regular exercise program, other than riding. I need that. I am not nearly the rider I was 10 years ago and I attribute that decline to being weaker and lacking balance.
Open to suggestions, ideas, support, butt-kicking. I need something.
I learned the sun salutation yoga routine which is easy to do anywhere and aim to do that a couple of times a week. I also plank and throw in wall sitting/push ups/etc wherever I can in my day, depending on how I feel. When I used to work out seriously, it just made my fibro flare worse and I felt obligated to ‘push on’(I did Pilates 4+ times per week at one point, and also was a runner). I walk my dogs every morning before work, about half an hour up a hill and back. My barn is self care, so I feed and clean my horse as well which is quite a workout in the mud/rain! I ride 4-5 days a week, as well as handwalk/graze almost every day. I also do the routines from Pete Egoscue’s book Pain Free which help with areas of pain surprisingly well. I think really listening to your body and what makes you feel both bad and good is crucial. Powering through doesn’t work forever, tried that when I was a trainer/instructor until it landed me in the hospital.
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@Myout your lifestyle sounds much more active than many who suffer from symptoms of Fibromyalgia. My thyroid is on the low end and my physician just prescribed an initial dose of thyroxine. My research reveals that Fibro and Hypothyroid often co-occur. I just want my life back.
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@Myout , as @DrHB says, that is pretty active! I will look up the book you mention. True that we have to be flexible about what we can do or NOT do, from day to day. It is hard for others to understand. I did Pilates for several years until the studio closed. I’ll be going to PT for my back, and I know core work will be the focus, as well as flexibility.
@DrHB , interesting about hypothyroid and fibromyalgia. I also have both (Hashimoto’s disease-- autoimmune–is the culprit for thyroid.) I’m about to see my primary care doc because my labs came back and my thyroid levels (all of them) indicate I may have tipped over to HYPERthyroid. That could explain my waves of fatigue lately, more than my usual. Time to adjust thyroid meds.
There is also a significant link between fibromyalgia and Lyme disease. My test results of Lyme were EQUIVOCAL but thyroid was on the very low end of normal. I started 2 prescriptions after the test results came back. I think I am on week 3 and I think I feel better. However, we got a “cold snap” the past few days and I felt worse. Medications thus far are Wellbutrin XL and Synthroid. I was pretty immobile all day yesterday and feel better this morning, even though last night’s sleep was fitful, and I could not get to sleep until 1 am (I usually go to sleep around 10)
Looking at research etc online, it looks like Wellbutrin can help with the pain.
I also started PT and that seems to be helping. I have much hip and lower back pain in addition to overall pain. PT has been working on hips/lower back and legs. His comment was that I need to ride more because my body has adapted to that and “locks up” when I don’t ride.
ETA: looked at Lyme Tests results and both tests came back “equivocal”.
What does that mean?
I swear by Egoscue and nerve release work (search youtube for nerve flossing)…it has helped the muscular/structure pain immensely. The little muscles nodules I haven’t figured out a solution for…those suck. I do go downhill fast if I can’t get good sleep AND I do restrict my life to only work and the barn for the most part. I figured out long ago that socializing of any kind is too exhausting and screws up my schedule for things like sleep so I rarely do things like go out to dinner, etc. When I was at my worst I decided that riding was my life/passion, and rearranged my life completely to support that. I moved, changed jobs, changed horses ( my previous was too wide, etc), changed my eating habits to a large degree, and just generally scrutinized almost to the molecular level (lol) what did and didn’t work for me. I still do that.
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I have both Fibromyalgia and Complex Regional Pain S along with many more issues and the only thing I have found to work so far is diet and rest after riding I try as hard as I can to keep my hopes up . My doctors tell me it really that each person is different and can cope with different level of pain but what ever we need to do to try to stay positve .
follow your body and only push when you can. If anyone has anything please pass it on. Leslie Morse
Does anyone here have fibro with MPS, or had one mis diagnosed before realizing you have the other? I’m curious about others’ experiences with this.
thanks!
so I checked out nerve flossing and did some of the exercises. I went through 2 days of unrelenting pain afterwards.
For those of you who still ride, do you work with a trainer, and if so, have you found a trainer who is understanding of your limitations and works with you at your level of ability on that day?
DrHB…get Egoscue’s Pain Free book and start with whatever hurts the most…it sounds like the nerve flossing went directly at the issue though so that to me would actually be a sign that posture/nerve issues can/need to be addressed. When I first did the neck/hamstring nerve flossing I thought it did nothing, until I noticed while falling asleep that something let go in my neck. The next day my overall movement was better. It doesn’t “fix” anything permanently…I still wake up with a crunchy neck though my hamstrings are never as bad as they used to be…so I do the flossing intermittently when something is irritating.
So I really do not know exactly what I’ve got. At my insistence, I was prescribed 30 days of doxycycline and about 20 days in, I felt wonderful. I ended the round about a week ago and was fine until yesterday. The symptoms are back but not at full throttle. I feel like I felt on one of my good days before: pain all over but not screaming, and energy enough to get through the day.
I hope to get in to see my medical provider this week, although everything is a bit crazy due to moving back up north for the “spring.”
Sorry, I just saw this. I kind of follow this recipe, but I use boiling water to increase the amount of epsom salt I can get into solution. I use Aquaphilic ointment from Medco as the base. Add a drop or two of any essential oil if you like.
1/2 C or so salt
3/4 C water
2 C ointment
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