Somewhere Inbetween... Fibro riders...

[pintopiaffe]

Unite here!

It’s not quite a disability–certainly not in the way of some… but we are not really normal either.

What is your greatest frustration?

-Mine is the unpredictability of it. Fine one day, can barely move the next. Pain I can deal with but the pain on top of the fatigue which make you lose entire days…

What have you found helps?

-surprizingly for me, plain old Aspirin seems to work as well as anything I’ve tried. I’ve tried diet changes, which help some, but never seem to be able to stick with them, even though I stuck wtih Atkins for 18 months.

What else?

-I just wanted to sort of start the discussion. Perhaps we don’t belong in this forum, but ‘normal’ folks sometimes don’t really get the challenge it is to live with this either…

[3Spots]

Hi Pinto,

I bore people with my story, but who knows, maybe it will help someone.

When I went into menopause I immediately had pain in all my joints; sometimes taking me two hours to warm up in the morning and get to work. i was in tears, and for the first time understood the term “quality of life.”

Doc said it was “menopausal arthritis” from the sudden drop of estrogen and I would be better in 3-5 years. (that part happens to be true, and i believe estrogen has a lot to do with fibro, too!) I read the literature on that, and sure enough rapid drop in estrogen – like in ovarectomies – did cause arthritic pain in 20% of women.

During that time I also tried Omega HorseShine for my horse and noticed his arthritis improved. I researched the equivalent dosage for me and began taking 8 grams of omega 3’s a day (Spectrum Flax Oil, 1 tbs daily). I was feeling better in two weeks. In six months i was able to stop taking celebrex and voltaren.

I have such empathy for folks going through fibro, or that have debilitating migraines, or anything else that just saps your energy and takes away life one day at a time.

jan

[Wayside]

[QUOTE=pintopiaffe;4421134]
Mine is the unpredictability of it. Fine one day, can barely move the next. Pain I can deal with but the pain on top of the fatigue which make you lose entire days… [/QUOTE]

I’m with you on that one. It takes energy to work through the pain, and so often it seems like there’s just not enough there to draw on. And I hate the “crash” after I push myself to do things I think I should be capable of.

Like, I can still do a lot of the things I used to, but I have to spread them out a little more. If I go on an away ride (trail ride, show) I really have to get things packed up the day before, and chances are I’m going to end up cleaning the trailer a couple days later, when that used to happen the moment I got home. Nowdays I just pull in the driveway, see to my horse’s needs, and then flop over and go to bed :lol:

Looooong walk warmups are really helpful to me. Throwing tack on my horse and then jumping right up there is simplty not happening for me these days. Mare’s a little cold-backed too, so fortunately our disfunctions are pretty compatible in that regard. I tack her up slowly, walk her around in hand for a while, get on using the mounting block, and then walk for a good long while before picking up any other gaits. Interestingly, if I have to get off and back on during a ride for some reason, I can do it from the ground easily, but not at the start of a ride. Mare’s small, so I can do it, but it’s not terribly comfortable for either of us.

I’m very interested to see how the Physical Therapy works for me. Just started, and it fascinates me that some of the problems plagueing my riding are actually going on in the rest of my life, too, I just never paid much attention to them. I have joint instability issues that have caused muscle imbalances which aggravate my Fibro, apparently, so I’m hoping the PT will help. For instance, I struggle with the “chair seat” problem, and one of the exercises I’m doing is straight leg lifts (hip abduction) lying on my side, with my shoulders hips and heels against a wall. I thought I could do those on-my-side leg lifts all day long, and I can, if I’m sticking my feet about 6" in front of my body :eek:. Forced into a straight position, it’s really hard for me. But I’m working at it.

Sadly, I haven’t found too many things to help the fibro directly, but I do find that managing my other health problems keeps them from aggravating my fibro, if that makes sense.

Thank you so much for sharing your story 3spots. You certainly could be right about an estrogen component. And I think the flax oil is a great suggestion. It’s very good for you, and very safe, so definitely worth a try.

As a side note, I really like Spectrum’s oil line. I used their sunflower oil to make sunflower nut butter when my son had a classmate with a peanut allergy, and I often bake with their walnut oil, and stir-fry with the sesame oil.

I’ve heard of people having fibro-like symptoms from lack of vit D, so I supplement that as well as vit B12. I have pernicious anemia also, so if I don’t get mega doses of B12, I start to get neuropathis, which usually show up first as my feet going numb in the stirrups. And I’ve heard a lot of people are helped by taking magnesium supplements like malic acid for fibro, though my understanding is that you need to be sure to get plenty of calcium if you’re taking extra magnesium.

I know there are a lot of skeptics, but pain is a very disabling symptom, and it can have a huge impact on riding and time spent at the barn.

[pintopiaffe]

If I go on an away ride (trail ride, show) I really have to get things packed up the day before, and chances are I’m going to end up cleaning the trailer a couple days later, when that used to happen the moment I got home. Nowdays I just pull in the driveway, see to my horse’s needs, and then flop over and go to bed

:yes: :yes:

I can do what needs to be done, generally, but then spend double or triple the time recovering as I used to. :sigh: The last clinic I went to ended up in a week long flare-up, my first acute flare up. It was awful. I thought maybe I was going to get the flu… but no.

I know there are a lot of skeptics, but pain is a very disabling symptom, and it can have a huge impact on riding and time spent at the barn.

For me it has been fascinating to travel down the road of diagnosis, since it’s ‘rule out other stuff’ than ‘test for this.’ Sleep study came back normal (while I was convinced I might show restless leg syndrome in sleep… but no.) Next step was a psych referral to rule out depression. THAT referral actually has been the most help–though she doesn’t think I’m really showing depression, but rather the physical symptoms are there from the pain/fatigue. Cymbalta has helped quite a lot.

3Spots, that is interesting, as certainly that’s a supplement that can’t hurt! I’ve taken my omegas on and off. Probably never really regularly or long enough to see a difference…

I really do think there are nutritional links, and I could do more. I have to get out of my own way to do it!

Interestingly, a Nurse Practitioner recently asked me if the Atkins “cased” the Fibro.

I can quite clearly point to being kicked in the chest 2 years ago June as the beginning of the problems. Crushed C4 disk and degeneration T 8/9, 9/10, 10/11. So the link between trauma, especially spinal trauma, and Fibro is one I definitely believe…

I’m hoping some of the other “Fibro Riders” chime in here.

My next question: How much do you expect (or not) to progress in skill/levels/training???

[Penthilisea]

I just upgraded to very low dose pain patches and the change in my functionality is amazing. Instead of using oral meds (can’t take NSAIDS), and feeling good for an hour or so, and the issues of tolerance, under and over dosing etc, I am in a steady state of pretty ok. I do have some breakthrough pain if I do somehting dumb, but it is NOT constant. I have done more in the past 7 days than in the previous 3 months since I broke my back.
Now if I could just stay warm, dangit!

[CatOnLap]

depends on the weather, airborne allergies, amd defo diet for me. But even when I am eating right for me (lots of fruit and veggies and high fat proteins like nuts and cheeses and meats and next to no fast carbs) a drastic change in weather ( generally the rapidly falling barometer that heralds a winter storm here) can activate the arthritis and myositis. And if something blows in on a wind that I am allergic to, I get symptoms then too along with the sneezing and itchyness of the allergy. Mostly though I am ok, and have had a symptom free summer. I am much better when I can keep moving and do physical exercise a couple of hours a day.

Mine seems to have a hereditary component as many members of 3 generations of my family have shown symptoms. Never really stopped any of us though.

I never noticed any change while taking vitamin supplements, but then I eat a lot out of my own garden and other local organic sources, so the food is pretty nutritious. I take vit D and my diet is high in salmon and other deep sea fish for the essential fatty acids.

[Orn1218]

I hate the unpredictable nature of fibro as well. I can go for days feeling great and then I hit a wall and there is no pushing through it for a day or two. The fibro fatigue is hard to articulate to people that do not experience it, but my dh is good about letting me rest when I need to.

I finally got a great horse that is a good match for me, so getting out to ride is fun again for me. I trail ride and after getting some fresh air and decent saddle time, I find I sleep much better than any med could offer.

I don’t do any prescription meds because i hated the side effects, but I do find that Aleve and Motrin do the trick, sometimes in combination with each other.

[DressageGeek_Ribbon]

When the idea for this forum was first discussed, it was meant to be inclusive of chronic and acute issues that affect your life with horses - riding, driving, barn chores. So by all means this is very relevant. I’m glad that there is discussion that can help others!

[pintopiaffe]

Very, very interesting about the allergies. Weather systems, ABSOLUTELY POSITIVELY NO DOUBT.

There was a story I caught on NPR some time last week that they have found that CFS is most likely a retrovirus.

Now, I’ve no idea what a retrovirus is… but… I got the gist of it, and it’s promising research. The hope is at some point to be able to turn the virus off.

Orn, I find stacking OTC stuff works as well as anything, only it’s going to wreck the liver eventually Still, it works.

I am introducing Iberian blood into my program in the hopes of bringing the rideability (soft, smooth back without a ton of movement) up while not loosing competitive gaits.

[DressageGeek_Ribbon]

A retrovirus is a virus with RNA (as opposed to DNA) as the genetic material - they need a “reverse transcriptase” enzyme to go through a DNA intermediate to replicate (make more copies). Many oncogenic (cancer causing) viruses are retroviruses, for example, FeLV (Feline Leukemia Virus) and HIV.

[Wayside]

Yes, I have hay fever, and my allergies absolutely affect my Fibro, as well as the weather.

My mares have a fairy high % of TB in them for warmbloods, and I think as result, their movement is a little more hunter-like, and less extravagent, which I think is easier on me than somthing with a lot of knee action would be. And my girls also have a ton of get up and go, which I find wears me out less than my lazy draft gelding did. He’s so loveable, I still have him around, but it just seems like so much work to ride him, so he just hangs out and soaks up cuddles and treats :lol:

I use Aleve sometimes too (usually the prescription strength) and it helps, but after a while it just kills my stomach. So generally I save it for when I have a joint issue that’s aggravating things. And I’m not shy about using the horse liniment on myself, either :winkgrin:

Sorry I didn’t answer your question about goals, that’s something I’ve kind of been thinking about lately. I don’t really have them, and I think maybe I’d progress a little faster and more consistantly if I was working towards something. Interestingly, my instructor and one of her other students and I were chatting after our lessons one day, and we were laughing a little because although our mares are kind of similiar, the other student and I have different mental reactions when they’re being a little silly. Other student gets frustrated and a little mad (though she’s by no means the angry or harsh type, I’m talking well within the range of normal frustration). I tend to shrug it off, “Oh well, it didn’t happen, no one’s in any danger so it’s okay.” Which sounds nice in principle, and it’s good for my hot sensitive mare that I don’t get worked up about stuff, but I’m never going to fix anything or learn anything if I ask, it doesn’t happen, and I just say “Oh well” :lol:

So yes, the Fibro does impede my progress, especially since I don’t spend as much time in the saddle when I’m having a flare, but so do about a zillion other things that I have more control over. Mare is a difficult ride on top of that, so that slows things down as well. But I have every intention of continueing to lesson and progress as a rider, and as far as moving up the levels, we’ll get where we’re going when we get there. And I’m not entirely sure how far the mares or I will go, but I’m enjoying the journey.

[Penthilisea]

Augh. Big cold WET weather front moved in here in NJ, I am a cold mess. Headache, stiff, cold, brain fuzzed, etc. And I had to drive all over gods green earth today, so I maxed out my meds today too.

[Hip]

Oh, yeah, fibro PLUS menopause. Top that if you can!

I read quite a while back that people with fibro have almost all had mononucleosis (sp?) sometime in their lives. I don’t know if that statement is true but I’ve not had it (that I know of) but have had a really bad case of strep throat. :no: Seems like after that, THAT’S when I started going downhill, slowly at first but now it’s really gathering speed.

I don’t take much in the way of meds but go my own pace. Also, I sure didn’t understand that retrovirus statement either, kind of went over my head! :eek: Can someone trans that into lay English??

[Across_Sicily]

I hate having fibro.

I’m 22 and was diagnosed with it (along with hypothyroidism) not too long ago. Just fabulous. Cannot believe the pain associated with it. It’s been getting worse lately, too, to the point where I’m all but living off Advil/codeine/Tylenol/muscle relaxants. Have had a bad last few days where I’ve been curled up in bed/couch basically unable to move. Groovy…

Hope this crap gets better. They put me on Savella which thus far has been useless. Hoping that once my hypothyroid is dealt with finally (doing some insane up-and-down stuff) the pain will chill out. I don’t think I can deal with 50-70 more years of it.

[pintopiaffe]

Yo, Hip… I keep asking every past-menopause woman I meet if you ever get your brain back… most smile, and sadly nod :no: at me. :sigh:

Sicily–hang in there! It does get better. It gets worse–but gets better too. Definitely hold out hope that when you get the thyroid more stable things will get better. As you learn how to manage, you can tweak diet, rest etc., and really manage the bad times, at least that’s what I’m finding!

Interesting–I have had mono. But I think I fall more into the ‘acute injury’ trigger as I can point exactly to the moment (double barrell to the chest–NOT my horse!) when things began… It’s like I just never got better.

I’m looking into things like wake-up lamps now, and lots of diet info…

[winkybear]

[QUOTE=pintopiaffe;4421134]
It’s not quite a disability–certainly not in the way of some…[/QUOTE]

Sorry, I respectfully disagree!!

Fibro really IS a disabling disease. I know of at least one acquaintance who went on Social Security Disability when her Fibro became so bad she could no longer work – and it was her only health issue.

The list of ‘things wrong with me’ health-wise is very long (I intend to post my introduction on the thread for this) but suffice to say that the Fibro beast is among them.

Fibro used to be the least of my worries until last summer. My husband became seriously ill and (since he doesn’t drive anymore due to a stroke) I truly wore myself out driving him to the Veterans hospital every other week for four months.

Did I mention that it required getting up at the crack of dawn and that he was pretty helpless for 5 days or so after each procedure? NOT a fun time in our house.

I got us thru it and then I quite literally fell apart.

My doctors thought my Poly Arteritis had come back so they put me on steroids for 2 weeks while they dithered. (Took all summer to get off steroids, but that’s another story…)

Finally my rhuematologist pronounced it as a full-on Fibro flare. It lasted all summer.

My Fibro symptoms include the usual sore tender points but also joint aches, and a great deal of muscle weakness and muscle pain.

Perhaps the most cruel for a horseperson is what I call “Bed Jacket pain” because the arms and shoulders are the focus of the pain, like those areas covered by a bed jacket. I get Bed Jacket pain only when I have seriously pushed myself beyond my limit – which I still do sometimes.

All the strength just drains from my arms and shoulders. That strength is replaced with massive pain. If it’s really bad the pain will surge up onto the jawline on both sides. I become a helpless kitten when this happens, and I have NO business around a barn until it passes. :no:

I am also a Human Barometer as my migraines and often my Fibro are very vulnerable to fast changes in the pressure.

What I have found helpful: The topical “Stop Pain” and guaifensin syrup (good ole robitussin) :lol: I also take a prescription muscle relaxer and pain meds.

Stop Pain literally stops pain. It’s astonishing. :eek: For me, the roll on works best, but it also comes in a cream and a spray.

There is a famous “Guafensin Protocol” to fight Fibro (developed by a Dr) but I can’t tolerate the massive doses of guaifensin pills (Mucinex brand) required. So, I just take 2 tsp of the syrup each night. Now, this is just the G-syrup, not the ones with extra added cough suppressants, etc. I find it helps but you gotta take it each and every night.

I also take Effexor as it is thought to help restore the deep sleep that Fibro robs from us.

From what I have read Fibro (and CFS which I also have) can be triggered several ways. Physical trauma is one way, but for me, I believe it was toxic exposure to Agent Orange for 5 years as a child on military bases. I have also had Mono so …?

Anyway, whatever the cause, there is no cure and it is a very PITA health problem for a horseperson to have! :mad:

[Penthilisea]

FYI to all, Fibro should no longer be classified as a syndrome (group of symtoms with no organic cause) because there is a diagnostic test that can be done on spinal fluid i believe, which shows an insane level of nerve substance p, which attenuates nerves to pain. In other words, fibro folks have a nervous system that is biologically trained to treat even mild stimulus as acute and sever pain.

[MEP]

Well, time for me to check in with my Fibro peeps!

I had mono as a pre-teen, and I don’t think I ever really fully recovered. Never had much energy, never felt really refreshed and ready to go. I also have allergies, lots of arthritis and mild scoliosis - insomnia (so I’m up very late at night, like right now). yadda yadda - what you all said about the pain, flairs, weather changes (which also get my chronic sinus problems going, causing bacterial infections - I won’t go into details, but you get the drift). Forever menopause, space brain (‘anyone home there?’).

Yikes!

Yes, whatever the cause, the pain is very real. I was on Celebrex for the arthritis, but had to stop when my insurance changed and I no longer had prescription coverage - the Celebrex is just too expensive, so am now on Tylenol arthritis. It helps some. I’m also on muscle relaxers, anti-depressants, allergy meds, and sleeping pills. I also take a multi-vit, fish oil, B vits, and load Ibuprofen when the pain gets out of hand. I’m finding that massage is most helpful in increasing my very limited flexibility.

I’m not riding right now. I’m way too stressed and my muscles are so tense, it’s just not a good time to ride. I’ve had a very stressful few years including a legal dispute with my neighbors that dragged on for years and was just appalling, (it never got resolved, but finally died a well-deserved death) and, along with many others, I’ve been very badly effected by the economic crisis.

I’ve got my horse living at home right now, along with my donkeys. its hard dragging myself out there sometimes, but they always make me smile and I know that getting out there and cleaning (as best I can), lugging hay, etc. is actually good for me.

Anyway, i know there’s always so much more to everyone’s stories of how they deal with their issues. It’s nice to know there are others out there who have an understanding of what we face - I’m finding that even some of my close friends don’t understand or recognize fibro as a debilitating condition. I really hope that some of the research that’s being done comes up with a better definition of the causes. I’m encouraged to hear the viral/CFS connection - there are doctors out there who feel that fibro/cfs are manifestations of the same underlying problem.

Whenever anyone asks how I am, I just say “hanging in there.” You know no-one wants a real answer, so hanging in there is neither too negative, nor does it go into all the gory details!

I do seriously miss riding. I want to get back to it - but want to feel more better, at least have my muscles be more relaxed when I get going again.

[Ted_the_Peep_Ho]

The problem is, since fibro/CFS affects so many more women than men, is that until recently it was treated with a pat on the head and the , “Don’t worry your head about this, little woman, just buck up!” So there is just not yet all that much to offer in terms of treatment modalities.

[Amwrider]

My fibro started right after my hysterectomy at age 38. Between the hysterectomy and the fibro I have gained 60 pounds since then and I just don’t feel balanced on a horse anymore.

With the fibro, I am honestly afraid of falling off of a horse. This is the first time in my life I have been afraid to fall. I know how much I hurt when I simply get knocked over by a horse. I hardly ever ride anymore, but do hitch up and drive from time to time.

Fibro is a disability, my rheumatologist suggested I apply for disability but I declined. I am capable of working, I just have to be very, very careful of how I push myself.

I too get the “bed jacket” pains on my flares, they get so bad I can’t brush my hair or really even wash it myself because I cannot raise my arms high enough. I manage a 20 stall barn too, so I really count on my student riders to help me out a lot on those really bad days.

I found out that when I was on the Cymbalta, it did a lot for the pain. It let me ignore the pain and keep on doing things, BUT it also allowed me to overdo things and when a flare did hit it was really, really bad.

I am off meds except for the occasional muscle relaxer, and I am doing better than when I was on the meds because I can “pace” myself more and can have a better idea of when I need to stop.