MS Exhaustion

[Jackie_Cochran]

I have been riding a lesson horse, MJ, for many months. I made progress with his responsiveness to my leg and hand aids, but I absolutely refused to sit his bone-jarring slow trot (and MJ is a QH.)

So I hit my equitation and training books and determined that the best thing I could do to get progress in my 30 minutes lessons/rides would be for me to get up in 2-point for the first 5 minutes of my ride. No sweat right? After all decades ago I could do almost an hour up in two-point if needed.

I started doing this a little more than a week ago. I must admit that I could not make it the full 5 minutes unless we stopped and I rested, then got back up into 2-point for the rest of the 5 minutes. By the second ride MJ started showing some progress, transitioning to the walk from the trot I usually sit the last few steps and for the first time those steps did not feel like I was riding a jackhammer.

Then my last ride on him he transitioned from the trot to the walk immediately instead of his usual shuffle down to a walk over a minute or so. Not only was it immediate, he kept his mouth soft and responsive, his back felt looser than before, and MJ did not get upset at all with me.

And I am utterly exhausted. I am still exhausted from my ride on Friday. My femurs and humeri feel exhausted down to the center of the bones. I can understand my femurs but I have no idea why my humeri feel exhausted since I was keeping a light, stable contact with his mouth or he went on a sagging rein. I did not need to use my arms to keep up in two-point.

I am posting this for people who have auto-immune diseases or anything else that causes exhaustion. Just because we could do something easily decades ago is no guarantee that we will be able to still do the same now.

And the really funny thing about this is that my thigh and butt muscles did not get sore at all. Just the deep, unrelenting feeling of great tiredness.

[cayuse]

Hugs. I can’t help but I can commiserate. I have psoriatic arthritis and some days my worst symptom is exhaustion. Not the good exhaustion from a days work, but that icky flu-like exhaustion. Sleep doesn’t help, I wake up feeling just as wasted as when I went to bed.

[Jackie_Cochran]

It took me four days of mostly doing NOTHING to get out of my exhaustion spiral.

I got tired from my lesson yesterday, but though I did the 5 min. of 2-point plus several more two-points as needed I did not get EXHAUSTED.

Now I am going to rest several more days, but at least I have enough energy to do my chores at home.

Further payoff for doing all that 2-point, yesterday I was able to sit the horse’s slow sitting trot for several strides without feeling like I was riding a jackhammer. He was not too sure about the correct speed, but now I can cautiously start working on developing a proper sitting trot with a relaxed back.

[3PonyFarm]

I give you a lot of credit for keeping at it and finding ways to deal with the exhaustion. MS is a terrible disease. Good luck with your riding!

[PaddockWood]

I’d never dealt with fatigue until recently - barn build, stress, working physically harder than ever in my life. Had a physical trying to pinpoint if something else is wrong. Thyroid is normal, D was on the lower end so starting a supp of that.

My point though is just to honor your GRIT. Perhaps even mildly walking in your shoes and feeling like I just need to lay down. What has worked for you to boost your energy or help recover when you are feeling exhausted? Is it a daily feeling?

[Jackie_Cochran]

I do some herbs–bilberry, astragalus, milk thistle, hawthorn berry (for my heart) and the supplement CoQ10. These help a little bit in that I feel even more tired if I forget to take them one day.

I drink 3-5 cups of coffee in the morning up to 2 PM, if I drink it later I just cannot get to sleep.

I avoid all extra sugar, wheat products, milk and milk products (I’m lactose intolerant) and other foods that my system is sensitive to (avocados and eggs mainly.)

I do my best to get 8 hours of sleep every night.

One thing I added lately that seems to help some, I use the interdental brushes and brush my teeth after breakfast if I am riding that morning. Since the bacteria that cause plaque also affect the heart it just seemed like a good idea for me, and it seems to help a little tiny bit.

And yes, I feel tired daily, not so bad when I wake up but after lunch my tiredness gets worse and degrades during the afternoon/evening.

One of the most tiring things I have to do is ride in a car, so I try and limit that.

Just sitting on a couch or in a dining room chair is VERY tiring, I last longer if I recline or sit cross-legged on my bed.

I also try to pace myself through the day. I complete a task, I rest, it does not matter how much else I have to do, if I do not back off I will get exhausted and that will last for days.

I try to stay as cool as possible. The modern technical summer fabrics are just wonderful! In the summer I wear breeches and shirt of this fabric, and I also have a Columbia omni-freeze zero neck gaiter that I wear under my helmet. I ride as early in the morning as I can–8:30 AM.

But I have not run into a “magic” pill that takes care of my exhaustion. I did try one (Nu-vigil?) but I started “spilling” blood sugar so I had to stop taking it.

I hope something helps you!

[Garythesquirrel]

@Jackie_Cochran, you sound like an amazing person and an inspiration to us all. You’re one of the COTH members I would love to meet.

[Jackie_Cochran]

Thank you @Garythesquirrel.

If you ever get down to the south central part of NC I would love to meet you too!

[Garythesquirrel]

I’ve never been to North Carolina but would love to explore that part of the country some day. I don’t know if you do any traveling, but if you’re ever out in the Pacific Northwest let me know!

[PaddockWood]

@Jackie_Cochran Thank you for sharing all those great ideas! I’ve heard such good things about CoQ10 and the others too. It’s interesting that sitting cross legged feels better than regular. Why is that do you think?

[Jackie_Cochran]

Well I am sitting sort of half cross-legged.

One leg is in front of me in the cross-legged position, the other leg is hanging off the side of my bed barely touching the floor (my bed has storage drawers so it is sort of high.)

It is easier for me to feel and be balanced in this position, which saves me a lot of energy because I do not have to use as many muscles to sit up. The leg in front of me makes it so much easier to adjust my upper body so I am not constantly over-balancing forward and back. If I start feeling tired I can just lean back onto my pillows and stop fighting gravity.

I have bad balance, some nerves in my brain that control balance unconsciously have probably been damaged by demyelination which makes it very, very hard for the nerve signals to get through. I have bad balance front to back and side to side.

One reason riding horses is so good for me is that I can PRACTICE losing my balance front to back. The horse’s neck is there (usually) so I can lean on it if I over-balance to the front and I can grab mane if my body starts losing balance to the rear. My body re-learns what it feels like when I lose my balance and I exercise the muscles that I use to get myself back into position in the saddle. This causes a demand on my nervous system to get going on replacing some of the damaged nerves or to find a new pathway that works.

It is not perfect, my balance will never be good and the horses will always have to put up with my struggles to keep centered on or over their backs. I am sure that I accidentally give “weight aids” that the horses have graciously decided to ignore completely, mainly because they do not make any sense to them. Since I learned to properly time and coordinate my hand and leg aids I “see” the horses checking my legs and hands before they decide if me shifting my weight “means” anything at all. If it does not make any sense the horses suck back, stop pushing as hard with their hind legs and give me a chance to get myself together again.

[PaddockWood]

Thank you for sharing and I can imagine how riding would benefit you so much and make strengthening fun.

[Jackie_Cochran]

I have been trying not to wear my ice vest yet this year, so that all my 2-point muscles get stronger.

But this week the humidity roared in, and it caused some “minor” problems with my riding. The horse, MJ, started canting his head to the right and was very reluctant to yield to the left when my riding teacher checked him out from the ground. My riding teacher had not mentioned anything like this all the previous months when I rode him. I had him in a double bridle (I have used it for many months) for my lesson, and the same thing happened yesterday when I used just a snaffle bit (again I’ve used this bit for months.)

So it is obvious to me that I am the one at fault here, and that I need to woman up and start wearing the ice vest again.

This is discouraging. I cannot do calisthenics at home, the last few times I tried that I just ended feeling even more exhausted even when I did not ride. When that happens everything in my body gets worse and worse until I stop being stupid and realize that I just have to be super, super patient with my body.

At least I lost a few more pounds lately (super diarrhea–from eating fresh cherries?) so the weight increase won’t feel as bad to the horses.

I am still having problems staying up off the saddle in 2-point. My breeches seat is still grazing the saddle seat, I am just not strong enough to do 2-point like I could decades ago. I also get really tired, and with the humidity my sweat is not evaporating like it did when it was equally hot but much less humid.

My neck fan has helped a good deal but one of my eyes started clouding over, I think that the “wind” from my neck fan was drying out my eye. I had been using my neck fan a good bit, but now I will have to reserve it for just riding.

I NEED someone to develop a MIPS helmet and a good protective vest with a built in air-conditioner, but that is not going to happen anytime soon.

So next week, weather permitting, I will be wearing my ice vest for my lesson and homework rides. I am expecting sore back muscles from being icy cold and the extra weight that I am holding up. I hope that by fall I will be strong enough to do a proper 2-point but right now I am not feeling a lot of hope about this.

If both the horses I ride had not improved so much from me staying up in 2-point for 5 minutes at the start of the ride I would quit, but they move SO MUCH BETTER. I can even sit my lesson horse’s sitting trot now for around 10 strides without feeling like my brain is slamming against my skull. Previously I had refused to school him at the sitting trot since I felt like I was trying to sit on a jackhammer, but now his back is so much more relaxed that I do not feel like sitting his trot is damaging my brain.

It is obvious to me, I HAVE to go back to wearing my ice vest for the sake of the horses. I just wish my body did not degrade so much in the heat but that just comes with having MS.

[3PonyFarm]

Does your saddle have knee rolls to help you support your two point position?
Again you are awesome and inspirational to keep working on finding solutions so you can keep riding! I wish you good luck with your riding and staying cool!

[Jackie_Cochran]

Yes my saddle has knee rolls.

I find this inability to stay up in a proper 2-point to be super frustrating. For many years I had to use an ancient Borelli Old English hunt seat type saddle (NO knee rolls), with my knees floating over the horse’s shoulders and I had no problems keeping up in 2-point. Same with my dressage saddle (after I removed the knee roll inserts so my leg would work right) and my Western saddle. I would not dare to ride in these saddles now, not only for 2-point but I just cannot dismount easily unless I can lean on the front of the saddle flap with my arm. It has to be a jumping saddle as they are the only ones whose flaps are forward enough so I can lean on them.

One day I got stuck up on an 18.2 hand horse because I could not dismount (Wintec Wide GP). There I was, over 6 feet up in the air. We finally got the horse by a set of steps and with help I got off.

The next time I rode that horse I figured out if someone pressed on my left knee I could get off. That was an interesting learning experience, but at least I now have an answer that works for me on those days that I NEED help with dismounting.

Before I got back to riding I was using my electric wheelchair a lot, especially to go down to the paddocks to feed, hay and water my horses. I never replaced my wheelchair when it finally gave out and that was over 10 years ago. That is why I keep riding, if I ride horses I can walk on my own two feet (plus canes.)

[PaddockWood]

@Jackie_Cochran I’ve thought about you so much and what all you have said. Again just today because I put up a couple hours of wall insulation and then my treat was a big bowl of ice cream. And you know…then…how I felt. Completely depleted of any energy. It’s a big problem that sugar.

Just want you to know when I read how you navigate life it inspires me to think of your grit and determination.

[Jackie_Cochran]

Thank you @PaddockWood.

I have an extra challenge today. My central air conditioning froze up.

Luckily we have a twice yearly examination of our system by a local air conditioning/other work on houses/furnaces company. The repair person should be here within the hour.

Right now I am wearing my summer technical fabric summer shirt, my Columbia hot weather neck gaiter, my old Kerrits Flow Rise riding tights (their Tactel fabric is the coolest and the most slippery which is why I don’t ride in them anymore), I am leaning against some ice packs wrapped in a towel, windows are open and every fan in the house is running.

The repairman just drove up! Hurray!!!

[Jackie_Cochran]

My AC is back on, we had a freon leak.

The repairman is coming back tomorrow to fix it, but at least he put more freon in and cool air is coming out of the vents!

[PaddockWood]

Thank goodness! You were going to need an ice tank like we saw Boyd Martin!

[Delta1166]

I’ve just stumbled across this subform and thread-- and thank you for posting, Jackie. I have Ankylosing Spondylitis and am now in a bit of a “chicken vs egg” situation with MS-- did the AS drugs potentially cause it, or just bring it out because I’m a genetic cesspool? shrug. I had been pushing through quite well until I had to have ankle surgery in October (yay, horses!), and the downtime made me utterly fall apart. I’m realizing now that things may never quite be the way they were before and how much I took for granted and it’s hitting me like a ton of bricks. I haven’t yet been formally diagnosed with MS outside of “demyelinating syndrome” but I go for the next round of MRI’s on Thursday and the neurologist I’ve been working with is not optimistic. Anyways, that’s all a long-winded way to say I’m pretty nervous, and very grateful I found this forum.