Lupus and horses...

[BuddyRoo]

I posted in Off Course about this the other day and was directed here. To be honest, I didn’t even think about posting here because I didn’t really consider the possibility that lupus would be a “disability”…not in the sense I’m used to.

In general, the purpose of my post is to figure out how those dealing with lupus manage their symptoms and are able to successfully participate in their horse life to whatever degree they wish.

I have not received a definitive diagnosis yet, but have had some issues that I’ve been being seen for for over a year now. It wasn’t until recently (when I was being treated for supposed skin cancer) that the “pieces” got put together by a very thorough dermatologist and we began the testing process. I don’t have biopsies or ANA results back, but based on symptoms alone, he is fairly certain that I’m looking at lupus.

As soon as he started asking me seemingly random questions about all sorts of things besides the derm issues, I realized that all of the “little” stuff I’d been dealing with on a recurring basis might really be something and not the “ideopathic nothing” I kept being told by my GP.

As it pertains to horses, the issues that I’ve been having are: fatigue, general body aches/pain (like the flu kind of), pleuritis, costochondritis (that make it VERY painful to handle a horse, let alone ride). In addition, while I kind of chalked it up to depression or something, the truth is, I feel like there’s only so much energy I have in a day and after getting ready for work, getting kids out the door, and putting in a day at the office, I’m pretty spent. The idea of going to the barn, cleaning, doing laundry…doing ANYthing just feels out of the question. When I DO push myself, I feel like I really pay for it the next day or two.

Now in hindsight after doing some research, this stuff makes sense. And I see the recommendations about sleep (wish I could), eating right (I do eat well, I just don’t ever feel hungry or feel too tired to cook though I LOVE cooking), and exercise (joined a gym just before Christmas).

That said, I’d like to learn more about what you guys as horse people are feeling and doing. Especially if you’re having success!

Thanks in advance. I’m not online a ton, but will keep an eye on this thread.

[Jumpin_Horses]

will HUGS help?

[BuddyRoo]

[QUOTE=Jumpin_Horses;5331055]
will HUGS help?[/QUOTE]

virtual ones, sure! Real ones? Ouch!

We need to get together soon, btw!

[Amwrider]

If your ANA and SED panels come back negative then you may have Fibromyalgia. It mimics Lupus.

[PalominoMorgan]

Agreed. I started a thread about my Fibro diagnosis I got right before Christmas. I got some really good feedback. I had the horses at home until last December. At that time I just couldn’t do it anymore. Once I had a nightmare about my mares being put down and the vet telling me it was neglect and my fault I knew it was time to board again. I just didn’t have the energy to keep them safely.

Now, because of a divorce they are with my best friend in TN, but it’s for the best right now anyway. When one of my mares does come back she will have to boarded. I just can’t rely on myself to be able to care for her on a day to day basis.

Anyway, I thought I might have lupus too. Even tested positive, but only at a 1:40 titer so the rhemy didn’t think it was enough to really be lupus. My ANA was always positive and my SED rate was always elevated. My Vit D was always in the tank. I had migraines, no energy, cognitive issues, fatigue, anxiety, etc.

I looked under every rock I could find, but in the end it was fibro. I started treatment two weeks ago. Don’t ask me how I’m doing though. I traveled at Christmas during a fibro flare and I have the second UTI in two weeks. I am NOT a happy camper.

Anyway, hugs to you. Oh, I also don’t sleep. I have some to realize that my pain and symptoms get MUCH, MUCH worse if I don’t sleep (with fibro you tend to not get any REM sleep - which a sleep study confirmed for me) so I chemically induce my sleep each nigh now with Tylenol PM when my little one is home or tonight with something a little heavier duty.

Good luck to you. If it is lupus, the same rules tend to apply. My best friend has lupus. Pace yourself. Don’t tend to over do it. You might want to google The Spoon Theory. It helps explain it a bit more. You already have the idea, but it makes sense how even as the person with the symptoms we can steal our own spoons.

[horsetales]

I have lupus and feel free to pm or e-mail me. I posted on the other thread. Like I said there a good Rheumy is key. I came out of remission a couple of months ago :no: The best thing is to keep moving, but not over do (easier said than done). Be sure to speak up if the NASID they start you with doesn’t work, body chemistry varies and another may work better. Be sure they do a full lupus panel and not just an ANA before diagnosing you. Who knows where health care and life insurance are going, but once you get labled with a life long incurable disease, both of those will become harder, if not impossible to get and much pricier if you can (unless employer provided)

[BuddyRoo]

Thanks! Got the results yesterday. It’s Lupus. Do not pass go, do not collect $200. However, I’m terribly relieved. At least now I feel like there’s a reasonable explanation for some things and I’m NOT losing my mind. Now I can move forward, formulate a plan and manage this thing.

Will reply more later. Gotta go eat. That is one of my fave challenges right now. Eating & projectile vomiting. Grrr.

[LexInVA]

Good luck! You have a hard road ahead of you but at least you have some support in your corner.

[Shadowmare]

I’m sorry you have the diagnosis of Lupus and happy that you have it…as you said, NOW YOU KNOW! And, no, you’ve not been nuts all this time! :lol:

Reading your description is like looking in the mirror. I have an extremely severe form of Lupus which utterly changed my life. It took 7 years of testing and fighting the situation to get the diagnosis for me, at about which time I ended up in the hospital with cardio/pulmonary and kidney involvement bad enough to kill me and then be brought back from the Other Side. My only thought by that point was that I’d put “See? I told you I was sick!” on my headstone!

So, yes, it can be a nasty situation to have it, and you are smart not to push your limits too far, especially when interacting with horses. Your safety must be paramount, which includes not stressing your health so much that you have a resulting Lupus Flare.

How does another Lupus person handle it? By realizing that those days of youth where I could spend all the time in the world doing hours of riding in any weather I wanted to are over…now, a “good ride” which lasts 15 minutes brings the same sense of joy and satisfaction…I count the little victories!

I make sure that if I don’t feel good enough or strong enough to ride, then I just groom or do ground work or At Liberty training…that’s good, too! And, I do not ride for hours at a time…if all I can manage is a half hour of grooming, 15 minutes of lunging or that good 15 minute ride, I feel victorious—the Lupus did not win that day!

That I can be out and ride at all is so wonderful and the horses are GOOD for you, too. My doctors encourage me to continue with horses and riding because being outside, walking around, bending and stretching to groom them, the actions of riding are all strengthening and healthy…not to mention the positive psychological “shot in the arm” it gives a person!

I do have to watch sun and heat (which is interesting as I live in the Southwest desert!) and so my riding and horse time are done VERY early in the a.m. and at night in the hot months. I am unsure where you live, but you may have to make changes in hours or times if sun is bothersome to you.

You may find that in time you’ll sleep a bit better if you exercise with the horses, but honestly, sleep is always an issue for me as well (as it is for quite a few of us with this disease). Just remember to rest and eat well and balance it with horse activities you CAN handle safely.

DO discuss various possible medications and therapies to aid in the discomfort, pain and fatigue. In my case, after trying many different things the only things which make much difference are taking hydrocortisone and if I have lung/heart involvement that is serious, oxygen…and resting. My days are much slower than I used to have by quite a bit…bugs me and is not my “style”, but it IS what it IS and it’s the only way I can live now.

If you do not feel that you can be safe riding alone or handling a horse by yourself due to how you are feeling, try to have a buddy with you. Failing that, just do something simple that day, like grooming and petting your favorite pony’s muzzle, feed carrots, just enjoy BEING with the horses. That is still good for what ails ya!

One last thing: if others don’t understand, do your best to let them know what you deal with, but be clear that you may have to cancel plans due to how you feel. You might lose some friends, but the ones who stick are your REAL friends.

Sorry for the long response, but I wanted to share the ways I’ve handled severe Lupus and a life with horses. I wish you the very best! :yes:

[myvanya]

I don’t have lupus so disclaimer there…I do have RA though so though not the same I do understand what you mean when you say you are glad for the diagnoses- I said the same thing! After two and a half years of tests and no answers and a doctor telling me I should just stop whining I was thinking I was nuts, so it was a relief to know that though I was sick I wasn’t bonkers.

My mom does have Lupus though so posting from what I know of how she manages.
She lives in ID and she struggles with sun and heat. So in the summer rides are usually in the evening as mornings are tough for her. She still dresses in loose tops, comfy breeches, breathable half chaps, ventilated, lightweight helmet, and has boots that are comfortable for her. So DQ fashion it is not :lol: but it works for her and that is what counts. On bad days she doesn’t ride but will groom, do groundwork, etc as Shadowmare mentioned. She tries to have a routine established and that seems to help. She works out regularly as well (indoors) and that has helped.

When she is sick she focuses on recovery though. (and pleurisy (sp??) seems to be a common enemy. So Eating well and doing what she can to stay healthy and avoid getting sick is a positive but sometimes it catches the best of us.

I wish I could contribute more…aside from that just Ehugs and jingles.

[Stacie]

BuddyRoo, I’m so glad that you were able to find a Dr who could get a definitive diagnosis. A diagnosis helps so much. It allows you to pinpoint what works and what doesn’t more clearly because you know what you are dealing with. Without a diagnosis it feels like superstition. If I do this I get sick, if I do that I feel better. I know you know what I mean It is sooo much easier when you can target things to change or manage because you understand the basis of the problem.

I don’t have lupus but a condition with very similar symptoms and didn’t get diagnosed until I was in my 40s. But even without a diagnosis it is the reason why I never applied to medical school. I would never have survived the hours. My husband knew I had issues when he married me, so that helps.

I find that I have to choose between things. Clean house or riding? Cooking or sleep? My children are at home but are in university so they take care of themselves. My husband and I both work full time jobs. He is of the opinion that restaurants are so I can ride and sleep. He does what little cooking takes place. We buy frozen food and bought a freezer to keep it in. My issues require a diet different from his, so we take care of ourselves, food wise. He feels strongly that riding is keeping me going and without it I might just fade away. I am much healthier since I got back into horses (4 years) but arguably more frustrated. I want to ride MORE and BETTER. I tend to not lose what I learn but I do lose condition and then I have to work back up to where I was before. I spend more time thinking and using body awareness and visualizing and less time with just pounding my body with practice in the hope that something will click. I stop riding when my muscles begin to get tired and I start to recruit other muscles. So I try to ride correctly every second and stop when I can’t. That means that sometimes it’s a 15 minute ride…at the walk. There is nothing I can think of that will make me want to go out be physical like being with the horses does.
The horses are boarded and while I am occasionally too ill to go out at all, my husband will go out and check them over and pick feet even if he doesn’t ride. Thankfully we have a wonderful BM and she watches the horses like a hawk so no problem with them getting injured and no one knowing. We have 3 and one of them is his. At one point I was so ill, I could barely stand, but my husband and son would troop out and bring everyone in so I could pat them and look them over.
I am presently dealing with a physical weirdness that I would have ignored (and had been ignoring) except it started to impact my riding. Turns out it may be serious, so again, riding saves the day. :lol:

[system]

BuddyRoo,

I don’t have severe Lupus. Honestly, I haven’t, I guess you would say, officially been diagnosed with it. But my results came back positive, and I’m in the process of hearing from the dr about the final diagnosis.

I’m only 14, and I have been riding for 7 yrs, and dealing with Lupus (or whatever it is) most of my life, since I can remember. I have fatigue, anemia, low blood pressure, Raynaud’s phenomenon, pain in joints, soreness in muscles, migraines (head and abdominal), migraines, fever, and other stuff. It’s not severe, but it is hard to deal with. But, I couldn’t deal with it without horses.

They’re what keep me going! The smell of the barn, the feel as a sail over a jump, my mare’s nicker, a smooth canter, etc, that is the best healing in the world! Personally, I think it’s good for people with Lupus or other health problems, because it’s something to live for, to fight for.

I understand time and stress issues. I go to an extremely stressful private highschool. Last year, I had school from 7:45am and it didn’t stop until 6:00pm, and then loads of homework, I’d be up until midnight, and then the same thing, 6 days a week. STRESSFUL!!! But, I just forced myself to put my homework down and head to the barn. I’d come back refreshed and my mind clear, and my homework ended up much better! So, I believe it’s worth it, even if you can only take a few minutes out of your day to spend with horses, it’s sooo worth it!!

Also, I had to prioritize. What’s really worth it? I ended up just decided school and horses, and had to cut everything else out…

Idk if this helped anyone at all… But I will be praying for you BuddyRoo! God bless…

Stay beautiful!!

[draftdriver]

I don’t have Lupus, but another auto-immune problem called Polymyalgia Rheumatica. I understand the fatigue, the soreness, the flu-like feelings.

I’m one of those people who has trouble saying no to requests from various clubs and organizations. I constantly end up with too much to do. Every once in a while, I have what I call a “crash day” where, after feeding the horses and having breakfast, I go back to bed and stay there for the bulk of the day. I generally sleep until noon, then spend the rest of the day reading or watching TV. It works wonders for me! After a “crash day”, I won’t have to take anti-inflamatories for 2 or 3 days.

My house work and yard work have suffered. I just do the socially acceptable minimum. Every once in a while I get inspired and tackle some of the outstanding stuff. And yes, I usually pay for it the next day, but there is a sense of accomplishment, too.

I don’t do as much with my horses as I would like to, but they are there for me to pet and fuss over. I get great satisfaction just standing watching them graze.

I have problems with anorexia. I’ve been known to go into the grocery store, needing to buy food, but come out with nothing, because looking at the food made me want to vomit. At times like these, I try to find something, anything, which I can eat without disgust – usually fresh fruit or fresh bread.

So, cyber hugs to you, and encouraging thoughts. You’ll find a new balance to live by. Enjoy your horses, and revel in the grounding that they offer.

[LauraKY]

I know I sound like a broken record, OP, but have you been adequately tested for Lyme disease (and not just the ELISA test, which has a 50% false negative rate)?

According to an article in American Family Physician, only 1 in 100 with a positive ANA test will have Lupus.

[FlashGordon]

Digging up this thread… finding it immensely helpful and comforting at the moment. After years of unusual and inexplicable health issues I’ve been diagnosed with SLE. Right now I am battling colitis, pneumonia and a partially collapsed lung, and have been in and out of the hospital the last 10 days.

Have had some pretty bad “flares” over the years and learned awhile ago that it is important to have a horse I trust, and reasonable goals. I just got back into horses about 8 months ago and purchased a 4 year old Morgan mare this summer, thinking she’d be a good, easy mount for me once she had a little training and some miles. A friend developed a training plan for us, we had some goals for spring, and we were making good progress, until this mess started.

Now mare is turned out and being a pasture puff, and I am stuck on my couch feeling a bit sorry for myself. I have two young kids, and a husband who works a lot, and I’m just really bummed. I keep trying to convince myself that now I have a definitive diagnosis, I can get on the right treatment plan, and things will be better. I don’t know how truly realistic that is, though.

I suck at being sick, but I was read the riot act this weekend about taking care of myself. So… thankfully mare is in good hands with BO and I am keeping myself occupied by perusing ebay and smartpak!

Anyway BR I hope you are doing well and enjoying married life! If you ever want to commiserate, shoot me a PM.

[Blacklock]

Keeping an informative thread alive, thank you. I have just been diagnosed with lupus to top it off and am scared. See the Rheumatologist Optometrist, and Neurologist next week with Dermatologist the week after presumably for more tests and treatment.

Hope you are still posting advice. I sure would appreciate some on this journey.

Thank you again.

p.s. I am a retired trainer in Florida. Hence the horse connection. From what I have researched this thread has compiled the most information about medications.

[WhiteOakFarm]

I have lupus, have had it for almost 30 years, feel free to PM me and I can give you some guidance on surviving and even thriving with it.