Patients Helping Patients

I belong to a Mitochondrial Support Group on Facebook. Honestly being able to message my son (he only uses "Messenger") and this group are the only reason I even have a Facebook account. "Mito Cafe: Support For Adults With Mitochondrial Disease." Where would I be without you?

I don't check in very often. But when I do I always find that I'm able to either help someone, or receive help myself.

New people to the site are always scared and overwhelmed. I totally understand. This disease is scary and overwhelming. Things can change or happen so quickly. I feel like I have no control over my body or health. It is very helpful to read about others in the exact same situation.

This was an interaction I had today that is very common. I feel very happy to be able to help others going through similar difficulties. 

Lizette O'Neill it really is terrible. I'm so glad you've found a good one. Can I ask what they do to help u with treatment? I shouldn't have gotten this far deteriorating like this... I'm so upset.

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Lizette O'Neill

Top contributor

It is very upsetting. I hear you. This is so hard.

I take a "mito cocktail" of supplements like most people here. COQ10 was a big game changer for me. I take 300mg of it 3x a day. Another very helpful treatment for me was Amantadine. It's meant for Parkinson Disease, but it helps me a lot with muscle pain and tremors. Then I take Lyrica and Cymbalta for pain and neuropathy (I have it all in my arms and legs.) The last thing that has hugely helped my energy is I take Nicotinamide Riboside 300mg. I learned that for this site. Someone said they were taking it and it helped them with energy. It helped me right away.

So yeah... a lot of pills. I've had all kinds of tests. A genetic test I recently had suggested I may not process "long chain fatty acid" foods properly. When I cut them all out of my life I was able to walk again and no longer use my wheelchair. That's pretty amazing.

Its taken me about six years to figure out what works for me. Even though we all have Mito we're all very different. I hope you find some help very quickly.