[QUOTE=catawhat75;5057190]
I am just starting to read this thread but I am so glad to have found this group! Lots of days I feel like I am the only fibro person and no one understands. To the OP and others of this thread, thanks for letting me know I am not alone.[/QUOTE]
This group helps me a lot.
I am not alone, and I am not crazy!
Well, maybe just a little… :lol:
Are you on Cymbalta? I used to have a lot of jaw clenching and teeth grinding when I was going on Cymbalta. It lessened after a while but seemed to come back for a few months when I quit taking it.
I was very, very sleepy on Cymbalta and would sometimes even have a kind of sleep paralysis upon waking up. My mind was alert but I couldn’t seem to make my body work. It felt like something was pushing me back down into the bed.
How I didn’t lose my job, I’ll never know. I got “talked to” a lot about it at work by my supervisor and that was one of the reasons I ended up coming off of it. It was a pretty good decision, I actually feel better now than I did then.
Anyone take Milnaciprin?
wow
I am so glad I did a Google search and found all of you! I was just thinking of posting on another site looking for fibro people who ride!
I too have it, appeared after two falls in a row that left me with a damaged sciatic nerve in my calf and whiplash! I also have spinal stenosis and degenerative disc disease so I thought the pain would go away after PT…yeah right.
I did have mono, TWICE once at 15 and again at 42. I didnt know you could get it twice. I also was an overacheiver like mosy of you and had an incredibly high tolerance for pain: I ran on TWO broken ankles for weeks before seeing a doc (2 seperate times)
I have what my rheumy says is a neurological fibro, meaning my pain is neuropathy. I hve stabbing pain in my hands and wrists, often unbearable. I also have the other random pain and fatigue you all talk about. AND I get lost all the time, grrrr! I also forget the names of things. I kept calling the oven an onion!
My meds
are 300 gabapentin 3 times a day
amitryptalin 25 mg
tramadol w/tylenol x 3
Cymbalta 30mg
and a sh&*load of asthma meds.
The Cymbalta is making me exremely depressed, weeping at any and often, every, moment. That makes the pain worse and so it goes…
The amitryptalin is amazing. I actually feel rested and only that I got run over by a mini cooper instead of a mack truck!
Riding helps IF I can muster the strength to actually get on.
Im struggling with keeping my two horses fit. My life has to change. I am thinking of halter horses as I do love to show but it is killing e!
Anyone else change like that?
I am a former event/dressage woman. Switched to breed shows (Paints) but it becoming very clear to me that it is too much to do the training, and all the barn work.
I hate this fibro!:mad:
Hi All,
I don’t have fibro, but was diagnosed with Eosinophilic Fasciitis when I was 15 (I am now 32), and live with pain/stiffness everyday, all throughout my body. Last January, they started me on cymbalta whn I was in the middle of an insane flare up, and not sleeping at all. It did make me tired, but I still couldn’t sleep. It also made me yawn like crazy, and I had a sort of light-headed feeling. After a while it went away, I’m not sure if it helps or not, I’m still on it. I also take flexeril, I take ambien once in a while when I really need to get some sleep, and I have tylenol 3. As well as NSAIDS and prednisone & plaquenil. I also have asthma/allergies, so all the meds for that too.
I am really lucky to see a great doctor, he is one of the top ped rheumatologists in the world, and he treats adults too. He told me once when I was ready to move that it wouldn’t help because there is wind and pressure changes everywhere, and that is the real issue, not necessarily the cold vs. warm weather.
It’s great to be on here with people with similar issues, and a similar love (horses :)).
Yup! I just had a tooth replaced yesterday that I snapped off at the gumline while grinding in my sleep.
Recently diagnosed, symptomatic for years - so greatful to find this group!!!
Hello.
We all have challenges in life - - but to find an online support group that truly understands, is well, incredible.
I want to find a way to “manage” to hire someone that I can trust to take care of our horses, etc - so that I can try to get my horse back into work so that I can get strong(er) again.
I also need to follow thru with doctor’s appt’s, dentist appt’s and tests, etc to both rule out major health issues /complications - and to find out the best means of coping on a day to day basis.
We have our own farm with horses and other animals - taking care of them is both a chore and a release. Some days easier than others - as several of you have also indicated.
I have been diagnosed with EDS and Fibro - both of which have multiple issues/challenges. I also have asthma (which is strange that breathing issues are common on this board, I have noticed. Link?)
I have been prescribed physical therapy - to include isometric exercises, especially while in the water or on a horse.
YES - she did recommend this!!
Now, the challenge is to somehow get my guy back in the “work mode” after being off for so long and get my butt back in the saddle… (I am working on the hiring a part-timer thing…) any thoughts?
Oh - for meds, I’m on a bunch, but so far none that truly work for the fibro yet…Can’t handle a fuzzy head - must be able to drive every day. Lyrica made me gain weight and swell up like a balloon… couldn’t even get my leg braces on…
and the EDS, well there is none.
Thank you for taking the time to read this.
K.
Th
HI All,
I am finally getting some relief from the Fibro and Lyme. Im on this concoction 50mg of Savella x2, 500mg Naproxyn x2, Flexril 5mg and Ambiem 5mg. I have gotten some relief from this but its only been about 2 weeks so .
Anyone know/take Savella? Any thoughts?
Thanks
I forgot to say in my post, ten years ago (it’s hard to believe it’s been that long!!) when I was in college, I did aqua aerobics. It was great, and I really found it helpful! And it was amusing, I was the only one that didn’t have white hair!! I also started swimming regularly 2 years ago in the pool at my local YWCA, they keep it super warm, so especially in the winter it’s been a great way to help stretch, feel better & get exercise…
Sorry spook1, I am not familiar with Savella…
Equitherapy, I say get all the help you can. It has taken me a long time to get confortable asking for help, or even figuring out when I need help, but it’s really important to do that and to take the time you need to rehab/feel better…
Thanks for the support!
You are right - it is hard to ask, receive and pay for help when all you want to do is to do it yourself. (if only you could…) However, I have been trying to find some folks with whom I can develop a symbiotic friendship and we can work together… ie the listings here for riders without horses, boarder doing some work in exchange for free board, etc…
Somehow it’s easier - on so many levels. Does that make sense? Harder to find the “right” people - as folks right now want cash for any services rendered (mostly) - but I am defintiely persuing this route.
Many of my challenges are coming from my EDS (including my ankle/foot disability)
Are any folks here familiar with Ehlers-Danlos syndrome?
Good Luck, it is really hard to find the right person, who is willing to be compensated in whatever way that you can… I know I personally get mad at myself when I can’t do what I want to do, and as I said, I have a hard time asking for help; and then I sometimes get mad when someone tries to do too much for me…catch 22!! My husband has figured it out pretty well after 8 years!!
I don’t know about EDS, but it sounds owie…
Hi, I’ve been lurking around here for a few days, and figure this is close to home as I’ll get. I don’t have fibro, but do have CMP, MFP or whatever other alphabet soup there is for trigger points and a chronically screwed up C-spine. I usually go with AFU :>) Oh and from Snowmaggedon, I ended up with low back issues. Just what I needed. I screwed myself up royally a couple of years ago when I tried working full time and working a horse full time. All the running that came with longlining wasn’t so good on the spine when coupled with rotator cuff tendonitis and 2 weeks on a ship. After the horse went over a fence (w/cart attached), she went to a trainer & I went to 8 weeks of PT. I love traction! I actually started riding again during PT which probably wasn’t the smartest thing, oh well, and managed to even show last fall. We got the mare driving again, so I didn’t have to ride, and haven’t since the beginning of the year.
I started working out with a guy at my local gym this spring, a nice group strength training set up, and got to the point where I was strong enough to actually drive the horse (show saddlebred = lots of upper body). About the time we started clicking, the horse pretty much had a nervous breakdown, (soured beyond belief & is now turned out at a new barn) and I got slammed with TrPs throughout my upper body.
The woman who taught me to ride died on Sunday, & I have this crazy desire to throw a leg over a horse. I was contemplating going to the barn this weekend to clean up the big b…ch, and see if I could borrow a lesson horse, which won’t be a problem. Problem is, I probably shouldn’t. My lower back has been a bit screwy lately & a TrP bomb went off in my shoulders a couple days ago. It scares me to death, but I still have the urge to ride. Right now the 2 hour drive to the barn scares me. I went to a horse show a couple weeks ago, 7hrs in a car, and almost literally couldn’t move the next day. On the other hand, I rode roller coasters last summer w/o a problem, even though I was kind of freaked out by it (first time since the car wreck that started this mess, not the coasters per se)
So should I be smart & just avoid temptation or just screw it and live life, and have few drinks when I get home? I’ve got to see the doc next week anyway.
Thanks for understanding - I appreciate it.
[QUOTE=kmbhoya2000;5154901]
Good Luck, it is really hard to find the right person, who is willing to be compensated in whatever way that you can… I know I personally get mad at myself when I can’t do what I want to do, and as I said, I have a hard time asking for help; and then I sometimes get mad when someone tries to do too much for me…catch 22!! My husband has figured it out pretty well after 8 years!!
I don’t know about EDS, but it sounds owie…[/QUOTE]
My husband doesn’t get it - but then again, we are only just beginning to unravel what the heck the deal is and HOPEfully what to do about it all, (meds, management, etc)
I have read here that many folks do feel so much better AFTer riding - but I do agree that if you have to let time pass for a while without riding (in my case it’s been a year now) it is quite hard to bring him back into that mindframe- consistantly. Thank goodness for ground based games and activities (from a few trainers- not just one…lol!) otherwise we’d never connect at all.
re: EDS… it’s a connective tissue disorder - - some or all joints are effected, as many other areas of the body- including the teeth, possibly heart and other organs, eyes, etc… I have several joints that sublax very easily - including stuff in my hips, back and SI 's.
My primary concern with bringing my horse back into work is with my ankles and feet. Ankles are soooo stretched out there is “little or nothing” that they can do to help. Over stretched rubberbands, basically.
I am supposed to be wearing braces that go 1/3 up my legs all the time - but most especially on uneven ground. (outside- period) Swelling, nerve discomfort, cramps, etc are all common. I really don’t know if those things are all fibro or what at this point. But the disabling joint laxity is def. EDS…
Did I read here somewhere about rainy days being worse for Fibro for some people? I think I saw that… today was very wet and cooler and boy it was like a Mack Truck ran over me… even with meds, etc… 800mg Ibuprofen, 50 lyrica, and my other asthma stuff, etc
On a more positive note? I hope to be more symptom free tomorrow, as I have help during the day and perhaps - just perhaps - I will be able to walk (quietly) on my horse for a bit… we can only hope - and strive for the best, right?
Thanks again for the support.
K.
equitherapy - I can’t imagine trying to escribe to someone how you feel, since you’ve just been diagnosed. I was a teenager when I was diagnosed, and I had been having problems for quite a while, to the point that I would fall over after getting off my horse, or that I couldn’t stand up after watching a movie, or not being able to walk down stairs, etc…but i didn’t realize that other people aren’t in pain all the time, I thought it was part of growing up!!! I have had 17 years to deal with this. And, after knowing my husband for 10+ years, I only recently was able to sort of describe to him what it feels like when I’m really having problems…
Red mares - I say go for it…and have a few cocktails and a hot bath when you 're done…as long as you’re not going out for a super intense ride jumping 6 ft fences where you have the chance to fall and get hurt, just do it!!! Take your meds, have some drinks and enjoy the feeling of being out on a horse!!!
Just an update- I left this thread sometime in June because I had finally been diagnosed with low thyroid and started on replacement and it was a miracle cure at the time. In retrospect, the thyroid replacement, the warm weather of summer/longer days and the changes in diet I had made a few months earlier, all contributed to my improvement.
I continued to improve and now, 4 months after starting meds I am feeling better than I have in 5 years. Not perfect, the fall weather has come and a bit of my fibro symptoms are back- mainly the disturbed sleep and morning muscle stiffness. Thankfully, it only lasts an hour or so-not everyday, not all day, days on end, weeks without break, like it used to… I am able to ride 3 horses and clean my barn on good days. I only do it about once a week because feeling so much better recently, I have gone back to work. Usually I end up riding about 7 hours a week but only 4 days. This is more regular riding than I have been able to do for about 2 years.
The diet changes I made, had not been succesful for weight loss prior to the hormone, and now I have lost and kept off about 17 lbs. This really helps, but like I said, the diet(and exercise) alone was not enough to cause weight loss.
However I think the diet changes did help in general with my inflammatory conditions. Kind of like the Zone diet- and I also exclude most simple carbs like refined flour, white rice, potatoes, sugars, etc and use more dark green and orange veggie type or native fruit (apples, pears, cherries, berries, peaches, plums, etc.) carbs. I grow a lot of the food myself organically.
I am not surprised at all that many people with allergies, asthma, irritable bowel syndrome and other disorders with an autoimmune component, become more prone to chronic fatigue syndrome, fibromyalgia and such. It makes sense if your body’s immune system is acting weird in one area, it would act weird in another area of your body. There is also for some families an inherited trend. That makes sense too since the immune system is genetically based and inherited, like blood types.
So I was diagnosed Fibromyalgia/CFS when I was about 13. The worst part for me is the tender points. If somebody just brushes against my arms it hurts.
I was about to be put on meds until I discovered correcting my diet with Herbalife. Ive been on it for 4 weeks and its helped with my energy tremendously. I guess because I was a poor and picky eater before my body is finally happy to be getting proper nutrition.
I am grateful to the Chronicle for providing this forum!!!
[QUOTE=amitkoequine;5163677]
The worst part for me is the tender points.[/QUOTE]
Carrying water buckets just kills me for this reason. Every time they bump against my legs it’s just agony. Used to be able to carry them nearly full, now I have to find creative ways to only move them when they’re empty enough that I can hold them out away from my body.
Thankfully I don’t have a problem wearing a lot of riding clothes. Breeches, half chaps, sports bras, all seem to fall into the “well tolerated” category. Don’t think I’ve worn a pair of jeans in the last three years, however. The stiff fabric is just too painful.
[QUOTE=DressageGeek “Ribbon Ho”;5163985]
I am grateful to the Chronicle for providing this forum!!![/QUOTE]
Me too! <cheer>
Ugh…I have some shirts that I don’t wear, one is a polo shirt with an embroidered number on the back. The stitching seams against my back drive me crazy as does almost every neck tag on the back of my shirts and blouses.
I will have to look into EDS, I have had some connective tissue problems in my feet and ankles for many years and I also think my knees and hips are involved, they seem to “go out” a lot on me.
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