Somewhere Inbetween... Fibro riders...

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.

Now that’s interesting. I had my first real “flare” after doing a 2 day clinic. I know I pushed myself, but it wasn’t all that hard. The flare had me praying for death, or wondering if it was H1N1.

Pent–is that test common? Do Dr’s know about it? I basically spent from January to Sept of this year being diagnosed by ruling out other stuff. Sleep study, etc. Never made it to the Rhumatologist (sp) because the psych prescribed the Cymbalta, which WORKS for everything but the fatigue.

Sooooo interesting to hear everyone’s experiences. This winter/spring I had the worst shoulder pain, radiating up the neck. Muscles… I thought it was from pushing the round bales, I ‘roll’ them. But I’m doing the same thing now, and no pain. (thank you Cymbalta)

My new job keeps me moving a lot. I do three outside rounds, walking about a mile, and three inside rounds, taking stairs whenever possible, in a 6 floor hospital. It’s a good thing when I pace myself.

I haven’t ridden the stallion since the clinic. I’ve gotten on the Young Master Irrenaeus once or twice, and have worked the Silly Filly, but its’ just so much work to carry the tack out. Seriously. That’s it. It’s SO minor, and so stupid. I have to store the tack in the house because of mice/critters. And to lift it off the saddle racks and carry it down the back stairs and out to the barn can be all it takes some days to keep me from riding.

Mind you–I’m still doing chores. But… that’s it. It sounds so stupid. Especially when I read about Leena and her struggles & triumphs, or some of the others on THIS forum… it’s ridiculous. So absurd as to be obscene at times. :uhoh:

Unfortuanetly, the test is incredibly UN common. It is expensive and invasive.

I too had mono shortly before my fibro manifested as an adult, but my mom and I feel I had symptoms in response to stress since childhood.

Likewise, my adult explosion of pain etc began when I had both the flu and an infection at the same time- was taking anti viral, antibiotics and and anti pain. My Body said ENOUGH!

Oh, I am SO sorry to hear of another person with ‘Bed Jacket’ pain – it is truly horrible!! :no:

OTOH I feel a bit better about it knowing at least one other person on the planet knows what I am talking about.

I know what you mean about not being able to brush your hair - the arms not only hurt but totally lack all strength.

I am SO happy you have others to do the barn work for you on your bad days. :smiley:

I hate that you can feel terrible and look fine.

I hate that only other people with fibro can understand you.

I found that cymbalta works well for most of the pain if not the fatique.

Lots of rest helps the pain too. When I was off for shoulder surgery and was able to go rest when I was tired, take a nap in the day, etc. etc. almost all the fibro pain vanished! It was amazing. First week back at work and it was the bottom of the well again. If I could work part time I think I could probably be much better but I A) need the money and B) need the insurance!

Yeah, the feeling of lead weights being attached that prevent you from lifting your arms up.

I have Chronic Fatigue Syndrome along with the Fibro and I really hate how when I am so tired I feel like I don’t even have the energy to move through air…kind of like struggling to walk through a sci-fi “force field” of sorts.

I think at those times I don’t even have enough energy to drop dead.:lol:

There was a piece on NPR this morning that I heard on my way to work about how people are using online forums and social networking sites to commiserate, research and learn about their medical issues. I immediately thought of this forum!

As a couple of folks have mentioned–it’s so helpful to know “I’m not alone.”

Now that everyone mentions ‘bed jacket’, I had a terrible time last winter/early spring with my shoulders & upper arms–it’s HR because I thought it was because I’m now feeding out off the round bales, rather than free choice (due to price tripling in 2 years) and I push/roll those round bales (about 750/800# each! :eek: And also the ‘hiking’ the sometimestoofull pitchfork of hay over the fence… ) I kept thinking that something to do with that was the issue, but sometimes I hadn’t done that… it makes perfect sense now!

In a mild flare up right now, and last one and this the big muscles on the front/outside of my thighs huuuuurt. Six flights of stairs in the hospital I usually take… using the elevator today :stuck_out_tongue: Wondering if that’s a problem area for anyone else?

Thanks to Choco-Mare I’m going to try getting a hold of some hockey nets to rig up over my round bales on top of the round bale feeders, to be able to feed hay free choice again. This year’s first cut was so late due to the flooding that it is fine and heavy like second cut. The ponies are SURE I am starving them, and would demolish WAY too much hay in way too short a time if I left them to their own devices. At the least I can lace up the hockey nets to make giant hay nets… we’ll see. I’m hopeful! Happier ponies and WAY more sleep/less work for me!

[QUOTE=pintopiaffe;4500997]
As a couple of folks have mentioned–it’s so helpful to know “I’m not alone.”[/QUOTE]

:yes:

I agree completely.

I’m off to a slow start this morning, pretty achey, but In think I’ll make it out to ride. Maybe after the Aleve kicks in :winkgrin:

Although I’m told that NSAIDS don’t do much for the pain of fibro, it seems like they do help me quite a bit. They certainly help my other causes of aches and pain, which maybe keeps them from aggravatig the fibro. Who knows?

Yes, I get the thigh pain, too, though mine tends to be more towards the outside and back most of the time. According to my PT, those are the muscles that area the weakest in my thighs, and I have a tight and painful piriformis muscle. So lots of exercises and stretches for me.

Interestingly, that muscle actually feels very comfortable while I ride, but kills me when I’m done and sit down in the car.

Walking uphill to catch my horse was rough yesterday. For years I had horses that would come running when I went into the pasture, and of course, now that I’m unwell, I have horses that mostly stand there and stare at me :lol:

I am so happy to find this thread on here!
I was diagnosed with Fibro almost two years ago when I was in my late 20s. It has been a long hard battle for me, but everyday things are getting better.

And knowing that there are other “horsey” fibro veterans out there is comforting.

I seem to mainly suffer from the extreme exhaustion, joint pain/aches, and the brain fog.
While it does not directly affect my riding per se, I dont ever seem to be as fit as I once was no matter what I do.
But my trainers are patient with me and understand that some days I just can’t do as much as they would like.

Sadly I was working as an equine vet tech but had to give up that career. I would come home from work and just crash till I had to go back. I loved it but I loved my family and mare more!
I still do tech part time with small animals and am in school to become a equine massage therapist. I have found GREAT relief from the joint pain after doing the bodywork on a horse. So I am hopeful that career will blossom along with my health. :slight_smile:

I will be sure to check back in here to see what is going on with everyone else. It is so good to know I am not alone! :slight_smile:

That’s a heavy gravity day :lol:

I don’t have either Fibro or CFS although the doctors tried to pin the syndromes on me before they found out what I REALLY have.

Still sucks, though.

Checking in on this thread again - yes PP, I also have pain in my thighs, sometimes a dull ache in the front, and a more electric pain in the back. My massage therapist told me that the back of the thigh is a common place for women to have pain. (Wonder if that has anything to do with the absolutely torturous shoes I wore in my youth - it pains me to see women wear high heels now - Oh, if only they knew what might await them years from now!)

I was also interested in reading about the shoulder ‘jacket.’ I had equine related incidents - first on my right shoulder (donkey equine related :cool:) and then years later on the left shoulder (horsey equine related :eek:) - and during the years before finding out I had Fibro, I thought I had torn my rotator cuffs. (And, maybe I had, don’t know, didn’t have much in the way of insurance at the time of the first one, so never got it checked out, while at the time of the second one I had seriously injured my foot which needed surgery, so I never realized how badly my shoulder hurt until much later. :lol:) Years later, I find it rather difficult to lift my arms up - I can do it, but get rather stuck at the ten and two o’clock positions and it certainly hurts!

Currently, my thumbs feel like they are sprained, and sometimes even feel like they’re dislocated. Ouch. Of course my joints hurt with arthritis, but the thumb thing is fairly recent and I’m not quite sure what I’m doing that causes it. I suppose it just might have something to do with slinging muck buckets around filled with manure. Ya think?

Had a fall on Thanksgiving day - don’t you hate it when you do something dumb and then you fall - geez. Got a very nasty contusion on both the inside shin and outside muscle where my leg got pinned between the horse trailer and a step. Last night it developed into a small hematoma. In all my various injuries, I don’t remember having one of those before!

Anemia due to chronic inflammation from fibro?

I guess the title says it all - has anyone else ever had this happen?

On top of the usual fibro pain, my hair is falling out in clumps and I have a visual aura spot that won’t go away or pop and turn into a migraine.

Doctor pulled blood to check for anemia and thyroid… I have been severely anemic before, but I don’t feel like THAT right now…

but upon doing some research last night, I found info about chronic inflammation causing anemia… and of course, anemia causes hair loss - and something I had never read before - that anemia can cause auras without migraines.

Anyone else experienced this? I am teaching and trimming this week but not riding at all, as it doesn’t seem like a really good idea - seeing spots and feeling like I’ve been run over by a bus…

labs should come back today.

I don’t know anything about those symptoms, but it sounds very unpleasant and I hope you get answers soon. (and please share when you do - I’ve learned so much about fibro from reading what everyone is posting!)

[QUOTE=EqTrainer;4532492]

but upon doing some research last night, I found info about chronic inflammation causing anemia… [/QUOTE]

I’ve seen with horses. High tissue iron and low serum iron = chronic inflammation.

It was one of the big clues that my filly had something systemic going on. Turned out to be a food allergy.

I’m not totally clear if mine is ‘fibro’ or ‘myofacial muscle’ issues…and I’m not entirely sure what the difference is.

Started after I got body slammed around a stationary 4x4 pole coming off a horse.

It’s mostly regional - neck/right shoulder. When it was really, really, really bad I couldn’t pick up my arm and had to carry it around with me.

Fortunately, I found a REALLY excellent orthopedic PT and a good doc.

When I started PT my ‘weight lifting’ was quite literally touching my head and ALMOST pressing against the finger. When we progressed to arms I would do 3 bicep curls with no weight and then have to rest. (And this is somebody who used to lift 12 hrs a week!)

After 2 years of PT and being able to use drugs when I was having trouble, I was down to a dull roar. 3 years of Pilates afterwards and I am ‘almost’ normal most of the time.

What I use for help - pain meds and soma if I feel like I’m going to crash (PT said just go ahead and do it…don’t wait till you crash or it will be worse).

Thermotex heating pad - it’s infrared - penetrates DEEP, and you can use it all nite if you want.

Got a scrip for a home traction unit that I use a LOT when my neck acts up.

Myriads of deep massage toys - but my favorite is called a travelroller.

(PS - I USED to think that pains I had in my hip and outer leg were from the fibro…turns out they were just from a trashed hip…).

(PS - I USED to think that pains I had in my hip and outer leg were from the fibro…turns out they were just from a trashed hip…).

:lol:

Not laughing AT you… but for a long time I just thought that it was kind of ‘normal’ to hurt so much because I’ve abused my body for the better part of 40 years just by being AROUND horses (chores, tripping/falling, walking into the trailer hitch type things) not to mention riding (spontaneous dismounts, etc.)

It took a Chiro saying, “this isn’t 'normal wear & tear abuse” and testing for the tender spots then ordering bloodwork etc. for me to really start thinking it was more than just being a middle aged horsewoman… :stuck_out_tongue:

OUCH EqT–I hope you get it figured out. Thyroid issues often go hand in hand with the Fibro/CFS crap. Chook vs. egg, who knows…

Thanks everyone… I got my labs back. Severely anemic again, which is odd, because I don’t feel quite like THAT but ok… thyroid is fine.

I think I am going to have to push my doctor on this one, she wants me to take iron and get on the pill… ok sure but WHY IS THIS HAPPENING TO ME - might need to resurrect my old doc who actually thought it was important to find out why things were happening…

I am so frustrated.

[QUOTE=EqTrainer;4543412]
Thanks everyone… I got my labs back. Severely anemic again, which is odd, because I don’t feel quite like THAT but ok… thyroid is fine.

I think I am going to have to push my doctor on this one, she wants me to take iron and get on the pill… ok sure but WHY IS THIS HAPPENING TO ME - might need to resurrect my old doc who actually thought it was important to find out why things were happening…

I am so frustrated.[/QUOTE]

Is it just us weirdos who don’t just want a fix, but want to know WHY?

Have you seen an endocrinologist? Have they tested your Parathyroid??

Been thinking of ya, hoping you’re feeling better soon EqT…

What is a parathyroid? Does it have a parachute?

[QUOTE=EqTrainer;4543883]
What is a parathyroid? Does it have a parachute?[/QUOTE]

No life saving devices included, I’m afraid… my parathyroid crapped out and never resumed function! Apparently hadn’t packed its parachute.

A retrovirus, in very simple terms, first invades one of your cells and then inserts the genetic information needed to make more of itself into your DNA in that cell. When that cell goes to divide, it makes of copy of its DNA which now includes the virus DNA. This effectively makes more of the virus, as well as passing down the instructions to make more of the virus to all subsequent generations of that cell. Imagine that a (vey tiny) part of your cell DNA reads TTACTAAGGG and the virus reads GTACAT and inserts itself right in the middle; now your DNA reads TTACTGTACATAAGGG.

I was really glad to see this thread, as another long-time Fibro sufferer. Can anyone tell me how long it took for the Cymbalta to help with the pain? I have just started with it a week or so ago and can’t say it has helped any yet.

It is very interesting seeing what different people have tried and what has/hasn’t worked. To consolidate all of this information I was thinking of putting together a survey. Is anybody interested?