Everything hurts. Riding made it worse. Update: Doc just pulled me off work for 3mos

[Lauruffian]

Update: I hit the figurative wall last week. “Depleted” has been my adjective of choice. My doctor, seeing how I’m getting worse and not better, has pulled me off my job as a middle school teacher through the rest of the calendar year. Right now, my return to work date is the start of the second semester–January 6. More in a later post.

Ugh. I’m really getting tired of this. Forgive my whining, but I could use an outlet.

I was diagnosed with the autoimmune disease Hashimoto’s thyroiditis in August. Thankfully the solid nodule discovered is benign, and my bloodwork numbers are more normal-ish now that I’m on synthroid. My energy levels are much better–the insane swings of crazy-drunk-fatigue and wired-insomnia have quieted. But, the awful body aches and severe headaches remain, and if anything, are becoming more frequent and more severe. 800mg of ibuprofen is a squirtgun on a bonfire and is essentially useless.

It’s so early in my diagnosis and treatment, my docs are still more or less waiting and seeing how things go. Right now, my endocrinologist wants to wait until I’m seen by a rheumatologist as some of my bloodwork numbers suggest something might be wrong in that direction as well. Apparently, autoimmune diseases are like potato chips–you often don’t have just one. She also suspects fibromyalgia, but doesn’t know the pressure point test.

I had a wicked headache Wednesday that flattened me, so I took a day off yesterday. I determined to go at least sit on my horse–do something for my mind, if not my body. I haven’t ridden in two months. So, after turning him out and tacking up, we did about 10min of walk/trot/canter in a round pen before just going on a walk around the property. It felt GREAT. I was smiling seconds after putting my butt in the saddle. I knew I’d need to rest, so I was home a little after 10am to pour myself into the couch.

And…that’s all I could do the rest of the day. My body was screaming at me. It wasn’t the muscles–it was my joints. And that whole-body-ache-throb thing was on fire. I was almost nonfunctional the rest of the day.

I went back to work today, but felt that same flavor of horrid all day. My joints are horribly sore, my hands and feet are swollen, and my body aches are throbbing such that I can feel the constant pulsation in my hands, feet, teeth. It’s depressing and discouraging as crap.

This morning, I’m muscle-sore, but that’s normal. I miss riding, and I really WANT to because it strengthens my core–invaluable for my trunk as I’ve had two back surgeries and need to keep that area strong to support my weakened spine.

It’s hard not to think about just retiring (at 40!!), or switching to part time, or going on disability, something. I can’t bear the thought, especially on days like today when one of my biggest PITA students tells me with a big grin that I’m “the best teacher ever” and I’m just so fair and nice. The good days are fine. The bad days are almost unbearable.

I don’t know what to do right now except wait for the appointment with the rheumatologist in two weeks.

But dammit, I just want to feel better. And I really want to ride my horse.

[Laurierace]

Jingles. Hope they find a fix for you soon.

[hundredacres]

I’m so sorry :(. I just read about Hashimoto’s, which sounds like similar symptoms to RA, but worse (I have RA and I don’t envy you). Have you started any treatment?

I know it’s hard but do get out to see your horse. This is how I finally got over the not-feeling-like-riding slump - I accepted that I was going to feel like crap anyway, so I may as well get some riding in and feel like crap. Once my medications were fine tuned, of course it was easier.

You’ll have to take care of yourself mentally too. Don’t let depression take a stronghold and don’t be too proud to ask for help if you need something to take the edge of the blues - because it’s hard to be diagnosed with something like that and not be down.

Hang in there. I’ll send jingles out for you for some energy and relief.

[Marshfield]

Jingles. This won’t reassure you much, but my rheumatologist does tell me that he sees many patients (like me) with multiple autoimmune disorders. So, a good chance you haven’t gotten to the bottom of things yet.

[Derby_Lyn_Farms]

I agree with hundred acres. I have an auto-immune disease, still not to the bottom of it yet but all tests say I have something. Rheumatologist said Sjogren’s and Fibromyalgia to begin with, now thinking Lupus.

I feel like crap no matter what, so I ride anyways. Don’t get to ride everyday. I ride as much as I can and it helps me out mentally. And if I have to I just don’t do anything. It’s still hard for me to accept. I know I have it. But I still look for other reasons. Then I come back to reality and decide that all my symptoms are not single issues, that they are all in fact part of the auto-immune disease. I go to a monthly fibromyalgia support group. I think some of them also suffer from other auto-immune diseases and are not diagnosed yet.

Sending Jingles your way. I suffer with daily headaches. I found the only thing that helped me is fioricet, it has a mild muscle relaxer, acetamenaphine and caffine. I also take vallium occasionally. The pain relievers do nothing for me. 800mg of motrin is like taking skittles. Vicodin has no affect on me at all. I need the muscle relaxers for my aches and pains and headaches.

Everyone tells me to use ice for my headaches but that hurts me too much. I really see an improvement with heat. Sometimes at work I am suffering from a migraine, and the drugs won’t work. I will grab a hot pack and put it on my neck and just chill for 15 minutes. Also zofran will be your best friend if you get nausea from the headaches.

Now I only work part time- 24 hours a week. But I do 12hr shifts and work midnights. Being there only 2 days a week helps, I really don’t think I could do a M-F 9-5 regular job. And my mornings suck. Takes me hours to get going. Midnights are perfect for me. I work 7pm to 7am. So much easier than getting up at 5am. Everyone is different. It has taken me a few years to find out what works for me and I am still struggling and finding new things out. Try to find a support group if you can to help keep your sanity. Sometimes I think I am just losing my mind but the support group reminds me that I am not.

[Lauruffian]

Thanks ladies. It is so good to know I’m not alone. The days the aches are that bad, it’s hard not to be depressed. The fact that something I love–riding my boy–made it so much worse, or at least appeared to, made it doubly depressing.

Personally, I suspect Sjogren’s and fibromyalgia along with the Hashi’s. I have an elevated rheumatoid factor, high enough to reach the diagnostic level of RA, but I’m almost certain I do not have it. They actually had me tested for RA and Lupus 15 years ago–I was negative for Lupus (and I think I still would be) but they thought I had RA. I disagreed–that was back in the day of the new internet and I was able to do some Googling. It just didn’t make sense, and still doesn’t. I don’t get red, swollen, hot joints that are sore to the touch–the pain is more vague. Sjogren’s causes an elevated RA and is often seen with Hashi’s and has the throbbing symptoms.

It’s so hard teaching and being a mom to two young boys in the midst of this–I’ve had many instances already this year wondering if I can make it through the school year, or if I need to find another profession, or if I need to just be a stay-at-home mom while I just focus on taking care of myself and my sons (well, and our animals). I just can’t imagine losing my massive chunk of the household income, can’t imagine doing anything else with my life, and worry about what would happen to my medical insurance. I worry we’d have to give up the horses (son would be devastated to lose his mini, though).

Then I think…well, I work in a profession where I have 180 days off a year. I may be working on a ton of those days, but I’m not on my feet in a classroom at least for them. This may be the perfect profession for me with my condition(s), if I just take a day off here and there. Or…maybe that’s unrealistic. I don’t know what is.

You know what I’d really like? I’d love to have our own horse property (we have been hoping to buy where are horses are now) and focus on fostering horses from rescue groups and pairing them with students from my 95% low income, high-immigrant school district. I miss the horse club I ran a few years ago that I just don’t have time for now that my sons are keeping me busy–and I know my eldest would LOVE to rescue horses.

hundredacres, thank you–I think I’ll make a point of getting on my horse again this weekend, if for a much shorter period of time so as not to push myself. He is good for my soul, although some days I confess I’m so frustrated with my body I find it even more discouraging to be around him and not be able to ride.

DerbyLynFarms, I’m sorry to hear about all you’re going through. A support group sounds like a very good idea–thank you.

When I am discouraged, it does help that my horse is such a mush. When I swung by yesterday just to feed and clean–I was far too achey for anything more–he mooched my banana off me. He’s so stinkin’ cute–and so very, very food motivated. :lol: He makes me smile, and that’s no small thing.

[RMJacobs]

I hate to say it, but I really do think you have some other autoimmune condition, as you suspect.

Be aware that with RA, the numbers don’t ever tell the whole story. Sometimes I feel my worst when my labs look good. Also, it seems each of us has a different experience with it. This is true for other autoimmune diseases as well. It sure makes it challenging to get a diagnosis.

Hang in there. I hope you get more answers and lots of relief soon.

Rebecca

[SendenHorse]

I’m so sorry. I have fibromyalgia but no immune issues. Just keep petting your horse, it will get better. Keep the chin up!

[hundredacres]

Whenever this topic comes up I mention this: consider your diet. Caffeine, sugary high fructose corn syrup (in so many foods), and milk, are all triggers for me. When I’m off these things 100% I feel GREAT. Of course, staying off is a whole other struggle, but it does give me some control. I’ve met many people who have other kinds of triggers - gluten is a biggie for some (thank god that’s not mine!). I even met a woman who told me fruit is what causes her inflammation, so she avoids fruit and acidic foods.

Today I feel like absolute crap because I took a road trip yesterday and ate fast food and drank sodas and coffee all day. I know better but sometimes that escape is fun and eating what I want feels like a binge - the good thing is that I know I can detox and feel better after a couple of days.

[Lauruffian]

Update: I hit the figurative wall last week. “Depleted” has been my adjective of choice. My doctor, seeing how I’m getting worse and not better, has pulled me off my job as a middle school teacher through the rest of the calendar year. Right now, my return to work date is the start of the second semester–January 6.

I’m actually relieved, which is startling. I love what I do, and I hate missing work, but I can’t do this. I’m so exhausted all the time, so achey; the body aches and headaches are getting more frequent and severe. I’m exhausted. Coming home to my own children, I’m cranky and emotional in my drained fatigue, and it isn’t fair to them any more than it is to my students any more than it is to my husband any more than it is to myself.

So, I get to be a mom and a wife and a me for the next few months, while I run the Gauntlet O’ Doctors (and tests, and diagnoses, and treatments, and follow up tests…). Next up is the rheumatologist Wednesday.

I did get to the barn this morning. No way no how can I ride, but I fed my herd of two some goodies, groomed them, wrapped legs, and turned them out for some good “YEE HAW!” energy burn off turn out. Then I sat at one of the picnic tables in the shade and watched them just hang out and explore while I rested and began the disability paperwork (thank HEAVENS I got that insurance all those years ago).

I get to spend some time with them, too, just breathing them in and listening to the birds. I get to go to my sons’ school Halloween, Thanksgiving, and Christmas events. I get to support my husband while he supports us.

Not a bad silver lining.

[chemteach]

I just retired from teaching high school. It was physically and emotionally exhausted, it just wasn’t worth it anymore.

[hundredacres]

Enjoy your time off. Heal yourself…I hope this is just the medicine that you need. It sounds to me that you need this not just physically, but emotionally.

[uphill]

You have such a positive attitude!..so I would say it’s not ‘all in your head!’ as Drs. years ago would say.

Lots of things can contribute to your problems…hopefully you will find a Dr. who looks not only at giving you medication to take away your pain…but digging into the cause(s). Sometimes life style changes and many times food changes can help. Finding the cause(s) is a big step in the right direction.

Enjoy your time, savor every moment and best wishes.

[atr]

I’m about as far from woo-woo as you can get, but here’s a few random thoughts for you based on my own personal experience…

I would really take a look at your diet. You’ve got the time and opportunity to do so now, so maybe look at eliminating some of the common allergens like wheat, dairy, and nightshade family stuff (potatoes, tomatoes, eggplant, etc) and see if it helps at all. Can’t hurt. Might help.

(Dairy was my issue. Ditching it completely has made a huge, huge difference in my life.)

Also, I’m a miserable, achey, sleep deprived basket case when I’m not taking quite a bit of supplemental magnesium. Yet again, the worse it can do is give you the runs, and it might make you feel better.

And if instead of taking magnesium, I decide to power through my achiness by taking ibuprofen, I feel like I’m made of rubber–absolutely no power or energy at all.

I’m sorry you are feeling rotten and hope you can find the key soon.

[Parrotnutz]

I have severe Fibromyalgia. I have never had swelling, thank Goodness. If you have any questions about Fibro feel free to PM me and I can share all my experiences, etc.
How is your sleep?? Very important to get real quality sleep…I have to take doxepin, which is an old antidepressant, at bedtime which really has helped me tremendously. If I miss even one night of quality sleep my fatigue level goes through the roof!
The doctor I see here in NJ believe many people with lots of strange disorders were first infected with Lyme and have it chronically and that the human tests for it is no good. So as he gets to see what happens with patients symptoms with fibro meds, if there are still strong symptoms he will treat with antibiotics. I have not gone there, yet.

[downen]

I’m so sorry this is happening to you. I’ve been there.

There are a few tests you should ask for. Have them run a B12 test; it is often low when you have adrenal insufficiency. Also, check your blood pressure. If it is low, you need a tilt table and test to see if you are orthostatic. You can even do this at home if you have a monitor; take your blood pressure lying down then after standing up. If it drops when you stand you’re orthostatic. That’s how I diagnosed myself. If you are orthostatic, you need a stim test for Addison’s disease. You probably have to push for it, it’s very rare. I had to fight tooth and nail to get the test done, but my doctor was shocked to see I had Addisons. If you have it, relief is well within reach. My symptoms were almost identical, I couldn’t climb stairs, my legs swelled up like tree trunks. A few days after starting meds, I was feeling almost normal. Best wishes to you.

Note: If you have Addison’s disease, Thyroid meds will actually cause you to feel WORSE, even though your labs are normal. I crashed after I started Synthroid for the first time (before my Addisons dx), and the doctor’s didn’t have a clue why.

[Lauruffian]

I’m having one of those awful, awful headaches right now so forgive my choppy writing and me not responding personally. I have wondered about Addison’s disease–I do have and always have had low blood pressure. Standing up after lying down and sometimes just sitting down frequently results in head rushes that make everything go black for a few seconds. It, like Sjogrens, fibromyalgia, lupus, MS–all on my radar of possibilities and things to wonder and ask about. I figure it all has to wait until I see the rheumatologist tomorrow, then back to the endocrinologist.

They have checked my B12 twice and it was normal. My vitamin D was low, but that’s common with this thyroid disease.

This headache and its kin I think are top on my list of “Symptoms That Suck Most.” Holy crap.

[downen]

The B12 is not always a giveaway, but your blood pressure issues make me think Addisons, or at least adrenal insufficiency. Do you crave salt? Is your skin somewhat dark? Addison’s causes darkening of the skin. No two Addison’s cases present alike, but here are some common symptoms:

fatigue
darkening of the skin
loss of appetite
gradual weight loss
nausea
salt cravings
low blood pressure which leads to light headedness

[Lauruffian]

The fatigue, certainly, but that goes with the thyroid, Sjogrens, lupus…you follow. It’s a popular symptom. I do have a loss of appetite and have commented on it, but thought maybe it might be the synthroid. I get nausea with the wicked headaches like I have now. The weight loss has been a goal anyway, heh, so it’s hard to know if it’s Anything or just me continuing to lose what I bloated up to last year. Currently down 12lbs, and 5lbs from my goal of my prepregnant with my second child weight.

Low blood pressure is normal for me, not that it’s not terribly low. Normal for me is like 120/80 or so. I don’t have darkened skin that I can tell. Salt cravings–well, I always prefer savory to sweet anyway. I can walk by donuts but not chips and salsa.

I wonder though–years and years ago, I donated blood for a surgery my father was about to have. My body completely went into shock. I was fine with donating blood; I’m not squeamish, don’t mind the needles, don’t freak, nothing like that. I was actually at the tail end of the donation when the nurse noticed I was going white. She asked if I was okay, I lifted my head to say I was fine, then paused while everything started going white and sparkly and I felt like icewater was poured over my head. “Actually, I feel a little light headed…” BAM. The next three hours are a blur of nurses yelling at me to open my eyes, vomiting into whatever happened to be there, being carried into a bathroom (because in a semi-lucid moment I begged them to–I was about to lose it at both ends at once, one of my most humiliating moments), and them freaking because my blood pressure literally fell off the chart. They wouldn’t let me go until they could get it to register again, which took a few hours.

I wonder if that’s a sign of whatever my something else(s) might be? My body’s go-to reaction to trauma tends to be to faint. Hmm…

[Calamber]

Have you ever been tested for toxicities at all, heavy metal specifically. If not, I would do that asap.