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Somewhere Inbetween... Fibro riders...

Riders with Health Issues
#201

We re-ran the blood test and did a rheumatological blood panel. Only the SED rate came back as way off- again/still.

And my doc is saying NOTHING. I am losing my mind because no one can tell me even a clue or a hint as to whats going on. It could be due to the herniated disc in my back. We are testing me for a recurrence of mono. And thats it. I see an accupuncturist, physical therapist, conselors (individual and group) and an orthopedic doc for my back. Now where do I turn?

I am sleeping 20+ hours a day- this is NOT normal for me, and NOT ok. It does not appear to correlate to any med changes. It is above and beyond my normal fibro fatigue. I already had my liver, thyroid, iron, and etc ad nauseum tested. The only thing wonky is SED rate and D, which I am supplementing with prescription 50k units per week.

I had hoped to get back on my horses this spring. JUst to walk around. But the effort of bringing them in, grooming and tacking up leaves me with no energy to ride, let alone to enjoy my time with them.

Sorry for the long pity party, I’m having a tough week.

#202

Geesh Penth, why aren’t they talking to you? Is it time for a new Doc?

That has got to be HUGELY frustrating.

I don’t have any words of wisdom or ideas… just wanted to say you are thoroughly entitled to a pity party. :frowning:

I’d buy you a drink, but you know, they say alcohol makes things worse.

It sounds like Mono. Or CFS.

It SUCKS to not have the energy to ride. BTDT. You know that a ride will make you feel better, but getting there is just too much. Grrrrr.

What’s scary to me, is that you are really knowledgeable and up to date. And YOU can’t get answers. What hope is there for us who aren’t so savvy?

(((hugs))) and a big :sigh: for you.

#203

Hum. Just an observation… Wind and weather…

I’ve been blaming flares and migraines on extreme barometric changes, but since Cat on Lap mentioned, have been paying attention to wind too.

And twice now, that seems to be more the culprit. Now–wind vs. drastic barometric changes… chook vs. egg. BUT–I woke up really really stuffy both yest’dy and today… so gonna pay attention to that connection.

#204

Wind drives my fibro crazy. Cold, blustery days are the worst. Hope you feel better soon PP!

#205

How are you guys with heat??

I’ve heard fibro sufferers tend to be very heat sensitive… I start sweating at about 69 degrees (and I’m not out of shape enough to sweat while reading :P). Hot, humid summer days are the WORST. I ride in WINTER with a short sleeve shirt or I die. (We do have a really nice insulated indoor, but it’s still only 50 degrees or so.) Just wondered if this is a weird “me” thing or if you guys deal with this too. It’s weird as well, I’m hypothyroid which tends to make one cold, but not me…

#206

I love the heat! Bring it!!!

#207

I have a VERY difficult time with heat. I’ve had heat stroke 3x. Anything above about 60 is miserably hot to me. When everybody is happy that it’s 75 and 80, I’m cursing the dreaded heat and wishing for cold and snow. Not that I feel better in cold and snow - I don’t. But I just feel so miserable in the heat that I want to die.

#208

[QUOTE=pintopiaffe;4855427]
Hum. Just an observation… Wind and weather… I’ve been blaming flares and migraines on extreme barometric changes, but since Cat on Lap mentioned, have been paying attention to wind too.[/QUOTE]

Hi - Just a note here…I think wind is very much related to barometric pressure. It seems logical to me that winds precede pressure changes, when air pressure changes, it “moves” air, and moving air is wind. :slight_smile:

I am very sensitive to both air pressure changes and wind. When the wind comes from the east it is especially bad for me as it carries allergens from the east side of the Cascades. It’s desert over there, as opposed to rain forest here. :no:

#209

Just wanted to update positively.

Have had Fibro symptoms on and off for 20 years. Wasn’t too bad at first- epsiodic, in winter, only for a few weeks at a time. But, mostly ON for the last 2 years- as in never a day without pain and 3-4 hours of stiffness every day or more on bad days. Started thyroid replacement in a tiny dose last week despite so called normal TSH.

We’ve had wild weather front systems moving through, 80kph winds, heavy rains alternating with bright sun and over all colder than usual…and I have been completely free of fibro symptoms since 48 hours after starting the hormone.

I haven’t felt this good in years. Sleep soundly, wake up feeling refreshed, no stiffness except for a few minutes.

Guess I’ll get off this thread now.

#210

I’m back.
Spent another week in the hospital, trying to get a handle on the sudden debilitating fatigue that morphed into bed ridden depression.

Changed up my psych meds, and added the magic pill, at least so far. Provigil. Created for folks with sleep apnea (which I was dx’d with in 2006) who get non restorative sleep and trouble staying awake during the day.

I have NO idea how it works, and it doesn’t work for EVERYONE but for me? Miraculous. I have energy. I sleep at night, and during the day I CAN do anything! :winkgrin::winkgrin::winkgrin:

Maybe not EVERYthing- yesterday I was screwing up boards to my new fencing for a few hours in the heat, lifting, carrying, holding, etc and today I am beat and I hurt.

But before the provigil I would not have been able to do anything yesterday either! No side effects so far for me, so far.

Also I need to get tested for heavy metal poisoning soon. After reading in consumer reports that protein shakes and powders often contain significant amounts of heavy metals that can be toxic with daily use, and having used protein shakes and powders extensively following my weight loss surgery in 2006, and reading that heavy metal poisoning can resemble or mimic fibro, CFS etc, I think testing would be prudent.

Not sure what the testing involves, hopefully just ANOTHER blood draw.

Anyway, I am sort of back, and hope you are all happier and in less pain then when we last “spoke”!

#211

Hello again,

I’m back again after months of not being able to get onto the forum due to me changing computers and not being smart enough to write down my password BEFORE I told the computer to “remember me”. Obviously, I could have very easily done the password reset, but honestly, are you ever so tired that something you know should be simple, just seems to be too much?
I talked to the dr about medication (again) so far I’m on Wellbutrin, Savella and Lexapro. The Savella has helped with most of the day to day pain (it’s not gone, but I’m better than I was) which has helped so that my “good days” are “better days”…if that makes sense. The problem is I still have more bad days then good. Days where I could fall asleep at the drop of a hat, where laundry is tossed on the bed and goes unfolded for a week because I just can’t muster up the energy to fold it and put it away, the kitty litter is beginning to smell and the kids are poking me and saying “mommy, it’s a bright sunny day, Get UP!”.

My husband travels so the bad days are easier to handle when he’s not around, I can basically be a lump (i telecommute 4 days a week) and sit in my pj’s at my computer, take naps between calls and feed the critters when it get’s cool in the evenings (I too, hate the heat). When he’s home, he’s one of those annoying people that spring out of bed, ready to go, and never stops moving until he gets in bed for the night. I still sometimes wonder how we ended up together, since at my best, I was never even CLOSE to being like that.
My dr said to come back in and we would try a low dose stimulant…not sure what she has in mind, but I’m willing to try anything. I Hate feeling like I’m 60 when I’m 32, and it’s not fair for my kids to have a mom who would rather lay in bed then play on the floor with them.

Sorry to drop this on all of you kind readers, it’s just that this is the only place I can share my fustrations… Obviously, the hubby, who I love, doesn’t really get it although he tries and makes a great effort to not be fustrated when he comes home and see’s the vacume hasn’t been run and the dishes stacked in the sink (again) and my friends try to be sympthatic but it’s hard for someone who hasn’t experienced this to fully understand how exhausting day to day life can be.

Penthilisea, I may just ask her about your magic pill…I would love to surprise my husband and actually accomplish something. Plus, I have another mare ready to foal and I REALLY need to get the foaling shed cleaned preped. Asking the hubby may be pushing the boundries of my hobby too far :slight_smile:

ok, back to lurking!

#212

You can’t explain it and they will not be able to understand.

The closest I have been able to relay to people is the feeling of your body when you have a bad case of the flu… Aches, pains, don’t want to move, joint stiffness, etc. That is a good/average Fibro day when things are manageable. The bad days are just so much worse. :cry:

#213

And on that note, I would like to add that I feel a bad day coming on and I can’t afford to have a bad day…I have a multi-day show next week and am bringing 7-8 horses and about 12 riders. I am too busy to let the hurt bring me down.

My bad day is because I gave my horses shots today and the one rescue mare hates needles. I got body-slammed up against the stall wall.

AS for the heat discussion, I am sensitive to both heat and cold. Fibro affects your nerve endings so that makes sense…you just feel things to greater extremes.

#214

Bump because it’s an informative and useful thread.

#215

Awww crap. :frowning: Take care of yourself and don’t push it too hard.

I am really sensitive to hot and cold. I also get freezing cold after I eat a meal. So cold it feels like hypothermia. Every night I eat dinner in sweatpants, sweartshirt, wool socks, and wrapped up in a king sized fleece blanket. My hands get so cold, they’re stiff and hard to move. This only started happening maybe a year ago when it started to become apparent that “something” was going on that the docs weren’t catching.

The amitryptilene has helped me a LOT but I’m also on diclofenac sodium for costochondritis, which apparently goes hand in hand with fibro.

#216

Lately I have been super temperature sensative- like going from the A/C in the car to standing outside in the heat and humidity makes me vomit, and vice versa- coming from car to outside to the house with a/c makes me sick too. Anyone else deal with this?

#217

I would suggest you look at things like menopause and obesity as a first line problem rather than fibromyalgia for heat sensitivity. Fibromyalgia is certainly a very real disease but too many people blame it for all syptoms leaving them with very limited treatment options.

#218

I agree with checking more thoroughly into hormone imbalances or other causes. I’ve had persistant fatigue and other symptoms for the past few years that my doctors diagnosed alternately as endometriosis and fibro, without running a full panel. I recently did a full hormone panel and found out that at 41 my hormones test as post-menopausal. Apparently I have premature ovarian failure, so I’m going in for testing to see if I have an auto-immune disorder and if not they’ll put me on hormone replacement therapy. I’m hoping it helps, but I also wished they had done this relatively simple blood test two years ago instead of doing laparoscopic surgery and putting me on a ton of other medications.

#219

I’ve also become very temperature sensitive in the past couple of years. My husband used to come home from work and complain about the temperature, since I never had the ac on in the summer, and I’d leave the heat set at like 60-62 in the winter. Now I want it to be 70 degrees at all times.

Like A2, I get really chilled when eating.

Savella has helped a ton with the pain, and quite a bit with the fatigue for me, but this temperature thing is quite frustrating also.

I keep several water bottles chilled in the fridge, and a few frozen in the freezer as well. Every time I go to the barn to ride, I bring a cold one and a frozen one with me. The frozen one I leave in the car so it’s liquid and cold when I leave the barn.

This summer’s been really humid here, too, which doesn’t help things. I’ve been sweating buckets every time I go out, and then it just sits on me :dead:

I’ll admit that my weight is part of the problem, and there could be a hormone element as well. My periods have been really weird for the last year and a half or so, and I have an ultrasound scheduled (though they couldn’t get me in until September, since it’s not an emergency, and I’m not pregnant :P).

And I’m probably due to have my thyroid and B12 levels checked again. I have pernicious anemia, and so far the thyroid tests they’ve run have been normal, but with my symptoms and a strong family history of thyroid problems, I try to get tested every year or so.

Anyone else hate trying to make a doctors appointment when you have about 5 million things wrong? I dread calling to make an appointment since I feel like I have to pick out a couple symptoms at a time, when really I could probably write a novel :stuck_out_tongue:

#220

Yes :sadsmile:

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