Energy levels and more

I been told that my low energy levels are not related to my OMPD. I am wondering if anyone else has energy level issues. I can not constraint very long it is starting to affect my work. I am 39 and have problems swallowing, I have to constantly cough when I eat or drink. I workout 3 times a week and eat right. No matter what I do I have weak hip flexors and I.T bands. Thanks for listening

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Hai,

My husband has OPMD (59 years old) and did
get tired due to his eye problems caused by the opmd.
I don’t know if this is relevant in your case .
Best wishes Christine

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Hi wvserver,

I am sorry you are facing these challenges at such a young OPMD age. I am curious what other family members had or have OPMD and at what age their OPMD symptoms started.
Many with OPMD experience fatigue symptoms. It is speculated that it might be related to mitochondrial changes that are observed some time after other OPMD symptoms have begun. Because of the rarity of our mutation, doctors are often unknowledgeable about OPMD and it’s nuances. In what area do you live?
Here is something to consider. in some cases, working out can actually cause irreversible exacerbation of the muscle death.
You can find additional information if you do an internet search for OPMD Oculopharyngeal Muscular Dystrophy Resources
Best wishes.

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Hi there, Christine,

So true!
Most OPMDers, as well as myself, report the same. We don’t realize how tiring trying to hold our eyelids up to see was, until after we have ptosis correction surgery.

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I also suffer from deep fatigue.
This was actually my first symptom, with the difficulty swallowing,
My specialist told me that fatigue and low energy is experienced by most people with OPMD

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I like many of you suffer from fatigue with OPMD…My eyes are very bad…To add to my tiredness,I’m on Herceptin for breast cancer… The side effects of this is extreme fatigue… My get up and go has got up and gone…

I was diagnosed with OPMD when I was 46
But experiencing symptoms since I was 42.
My first symptoms were difficult swallowing and deep fatigue.
À fatigue that made me almost pass out.
I am from Quebec where OPMD is more prominent.
My specialist
Told me there is not much to do to help with the fatigue.
But she keeps encouraging me to keep moving as much as I can.
Hope it helps a bit

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Fatigue is a lot. When my legs hurt, I need to sit. My quads burn and I’m so uncomfortable. I feel like I could sleep 20/24 hours a day and not be refreshed. My mother and uncle both have OPMD and feel the same. Recently someone pointed out that I’ve been talking with my eyes closed a lot. I had no idea. I think it is just restful for my eyes. But fatigue is a symptom and your loved ones need to know—and you are not just being “lazy”.

I FINALLY have 1st neuro appt. With a specialist who knows of OPMD . My right leg is so painful . What works ? Anything ? What hurts? I didn’t know this leg thing may be part of OPMD?

Honestly the only think that stimulates my appetite and helps with pain is cannabis edibles. And I have a hot tub. They are pricey but I love it. My legs feel so good. I try to go in at least twice a day. I got a rail from Amazon because I started to feel unsafe trying to get in. Both my quads are completely atrophied.
I hope this is a good doctor fit for you!

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Continuing the discussion from Energy levels and more:

I was only diagnosed 6 months ago - 62 years old. For 10 years I was diagnosed with “exercise intolerance” as I was exercising hard and regularly - but going backwards with capability and having unusual pain. I was told to work out harder to gain results - until I could no longer get up the hill on my bike. My husband had finally had enough and made me promise to go to Mayo Clinic where I got my diagnosis. Joke is on me… my whole life I’ve eaten healthy and exercised so that I would have a healthy and active retirement. I had swallowing issues and the droopy eyelids - which I had just found ways to work around. Thought I was just a very slow eater… :slight_smile: I now have therapy M&Ms in my drawer at work and am working my way out of depression - not what I expected to be doing at this time in my life. Thanks for letting me join this group. Perhaps I’m not as crazy as I thought I was… it’s really affirming to hear all of your stories and experiences.

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Haven’t posted in awhile but I am now 42 and my legs hurt and I have zero energy but I continue to work I am just no as good as I used to be seeing becomes harder by the year. I am not close to my family but I am the first and only one who’s been diagnosed up to this point

This is where part of my confusion with OPMD comes in. As I read the “official” information on our affliction, it lists the leg and arm weakness and the crazy fatigue as unusual. For me, the weakness and fatigue is the most terrifying as I can’t figure out what I’m supposed to be doing to keep my muscle mass. I’m glad that you are here again and posting as it’s really tough to find anyone who understands OPMD. Heck, other than those dang drooppy eyelids, we look like we’re just fine, fine, fine… Something that was a game changer for me was that I found out (through constantly telling my eye doctor things weren’t right) that I needed prism lenses for some weird double vision stuff. If you find that you have to tilt your head to the side to see things clearly, especially with driving, this might be something you should ask your eye doctor to check. It doesn’t come out on a normal eye exam, but is fairly easy for them to diagnose if they look for it. It has helped a lot with eye fatigue for me.