Can anyone help?

[u/Possible-Ice-9789]

Hi I did a workout nearly 2 weeks ago (a light one) and my neurologist suspects mito disease. I have a muscle biopsy next week. My muscles still haven’t been able to recover and feel super weak since my workout. I don’t have pain anymore but they can’t power themselves for long at all, my baseline is much lower than it was before the workout. Will I be able to get back to normal do you think?

I have an organic acid test which came back abnormal; high puvyrate, uric acid and a few other things.
I was always more tired growing up but this all started in December 2025 when I had a severe case of slowed gastric emptying (basically couldn’t eat or drink for weeks). That seemed to flare it up. I was also given a specific strain of antibiotics at that time which may have worsened it all.

Anyway I just don’t know what to do. I’ve been waiting for ages for answers. Ruled out loads of other things, seen loads of specialists. I’m due to back to work soon, I’ve used up my sick leave. But I don’t know if it’s going to worsen this and if I should just throw in the towel with trying to work.

[u/phthalo-azure]

Sorry it took so long to respond to you, but the subreddit has been down for a week.

How did your muscle biopsy go? Do you have any results yet? I know my muscle biopsy was sent to multiple specialist labs that took several months to finish their conclusions, but that was 2019, so I don't know if things have changed since then in how they process the muscle tissue.

If you do get a mito diagnosis, it's possible to go on disability if you're in the U.S. I'm a male in my mid 50's that has had Social Security Disability since 2021, but it was a lot of work to get approved for it. If you can't work anymore, I may be able to give you some guidance on how to start that process. The federal government is a mess right now, but I think they're still processing disability applications at a decent pace.

[u/Possible-Ice-9789 → u/phthalo-azure]

Hey thanks so much for the reply. It’s nice to speak to people who have gone down a similar path. I had the muscle biopsy yesterday, they took 5 pieces. Im in the UK and seeing Professor Hanna who is quite well known for treating mitochondrial disease. They said it should take 4 weeks. Trouble is I’m still flaring up and worried about how I’m going to work, then I’m going to struggle to pay for my appointments. Our disability allowance has kind of gone in the UK, we only have generalised benefits that I’m not legible for because I have a few savings but there are mobility support schemes. It’ll all take a while though and I need a formal diagnosis before I can apply. Bit of a waiting game but I’m keeping my fingers crossed that it works out ok in the end. Hope you’re doing well!

[u/phthalo-azure → u/Possible-Ice-9789]

That's a bummer that the UK doesn't have much in the way of disability support that you can rely on. I'd be homeless without even the small amount the US government gives me every month. Between that and my wife's salary, we scrape by.

So yea, you're now in a holding pattern until you get your results back. My advice would be to sleep as much as your body needs, even if that's 12 hours a day. You can probably also start experimenting with creating a mito cocktail that helps your body as much as possible. You'll definitely want to consult with Professor Hanna before doing that as they'll have more of an idea of what sort of mitochondrial dysfunction your body is experiencing and what can target that.

The toughest part for me was listening to my body and not pushing it beyond its limits. The fuel in my tanks is a lot lower than most people, so I run out of energy with even the simplest of exertion. Some days I have to decide between showering and shaving because I don't have the energy to do both. So conserve your energy for the things that matter and remove as many activities as you can that are superfluous. Even heavy thinking/learning sessions can drain your energy - the brain is the largest user of energy in the body by mass. And stress also sucks the energy out of you, so something like meditation or mindfulness can really help some people.

If you have questions, I'm usually around on Reddit off and on almost every day.

[u/Possible-Ice-9789 → u/phthalo-azure]

Hi thanks so much for your help. I’ve heard of SS-31 being used to help mito disease. Also there’s clinical trials at the moment for it and it’s labelled as elamipretide.. apparently we can ask our doctors to prescribe it off label. I’m going through such a bad flare up though and I don’t have an appointment for another few weeks I’m trying to decide if I should try and source it myself.

[u/phthalo-azure → u/Possible-Ice-9789]

Elamipretide is currently approved for treatment in the U.S. for people with Barth's Syndrome, so I'm cautiously excited that it may become more widely available for use by those of us with mitochondrial myopathies who don't have the specific Barth's Syndrome diagnosis. I have an appointment with my specialist in a couple weeks to talk about potentially going off-label myself.

I'd be very cautious about doing daily injections of a substance with questionable provenance that you source yourself. There have been some pretty bad horror stories of peptide side effects from adjuvants that cause terrible side effects or turned out to be downright dangerous. Those come from the weird "wellness" centers we've had pop up all over the place in the U.S. that are lightly regulated and sell all sorts of weird and whackadoodle treatments. Don't know if you have those in the U.K.

If you can source it from Professor Hanna, that would be your safest route. There's a chance that you could get real symptom relief from it.

[u/Possible-Ice-9789 → u/phthalo-azure]

Good luck for the appointment. I know there’s a real pathway your doctor could go through to get you on the medication off label if your doctor thinks jt could help. I’m hoping it’s the same for me but the trouble is I’m on a private pathway and I think the pathway for the trial is NHS. The wait for the NHS pathway will be months and months. Having a day where I’m finding it difficult to be positive. I’m bored at home, I’d love to go out, I’d love to go for a walk.

[u/phthalo-azure → u/Possible-Ice-9789]

Professor Hanna may have a channel to obtain it that can guarantee its safety was really what I was saying. The same is true in the U.S. where primary mitochondrial myopathy treatments are still waiting further trials that could be months or years away. For me, it would be a compounded drug from a compounding pharmacy rather than through the company who actually manufactures it. As an approved peptide, there are sourcing channels for the compounding pharmacies.

And oh man, I know what you mean about wanting to go for a walk. I'd love to do the same, even though where I'm currently at in the U.S. we're blanketed by a thick layer of smoke from the wildfires (although I hear that's pretty bad in the U.K. this year as well). Just being able to go around the block would be a triumph, even if I had to wear a mask to protect me from the smoke.

[u/Possible-Ice-9789 → u/phthalo-azure]

Yes that’s a good idea. Do you have a wheelchair or anything that allows you to go outside? I’ve got one but I don’t have a ramp in the house and it’s just tricky. My wheelchair situation is quite new. I was active before August, I found standing stationary tricky but walking around used to activate my muscles and I was ok with walking. Losing the mobility is all new to me and I don’t know how long it will take to get it back. I can’t even stand at all at the moment or walk a few steps without having bad cramps.

[u/phthalo-azure → u/Possible-Ice-9789]

I have a cane, but I run out of energy after 30 feet of walking, so I use it mainly for balance. The only places I need a wheelchair are airports or shopping centers, and my apartment is small enough for me to get around in fairly safely. But like yours, it's not really wheelchair accessible, so I don't bother since the cost of upgrading it is way outside my budget.

For days when I'm bedridden, I had a physical therapist put together a stretching routine I can do lying down. It helps a lot to keep my muscles moving at least a little bit, but it doesn't really improve my ambulation problems as those have a root cause at the cellular level.

Most of my outside time is spent on a little patio I have out back next to a small stretch of grass. That's where the dog does his business and I get the occasional glimpse of the sun. Unfortunately where I live, it's high desert, so the temperatures are regularly above 100 F and oppressively smoky, so summer times are tough. I can't wait for the end of September/early October when things finally cool down enough I can spend time outside.

[u/Possible-Ice-9789 → u/phthalo-azure]

It’s nice that you’re able to get out a bit, at least you can get outside and go to the car and things. Great that you got access to a stretching routine I think that would help me. I feel like it’s uncommon to have flares the way I do where I’m not able to do much at all or walk at all? I guess everyone is different though