Sjogren's, FM and now Mito :( waaaaa!

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Hi y'all, I was diagnosed with Sjogren's Syndrome 3 years ago, then fibromyalgia about a year and a half ago. This past August, I was diagnosed with Mito failure - still undergoing diagnostics to find out what that failure is.

I have started on ATP/Glutathione injections, ATP sublinguals, CoQ10, Acetyl L-Carnitine, Creatine and D-ribose for the mito. These supplements have resolved my FM pain - so thinking that was misdiagnoses.

For the Sjogren’s treatment, I’m on Plaquenil and Low-Dose Naltrexone and for arthritis; I’m on Naproxen (which I’m learning is bad for mito), so looking to you folks to tell me a good alternative to keep the inflammation down.

I’m 45 and sick-and-tired of being sick-and-tired. The new treatment has really been helping me, but I’m facing a few issues that have me really concerned. 1) hypoglycemia – I’m waking up some mornings in a severe glucose crisis and would love to know how to handle his better. 2) The new treatment is helping with this, but my BP is low. I was averaging in the 80’s/60’s with sudden drops into the 50’s/40’s. With the treatment, I am averaging 90’s/70’s but can’t seem to get it any higher than that. Still learning what I need to watch out for regarding cardiac issues with his disease.

I also have two sons. One seems to be doing pretty well, my 23 yr. old. My eldest son, 25 yr. old – gets fatigued easily and getting him in to the doctor is a real trial. I have a bad feeling he has this as well. I bought him a set of supplements – the same I am on sans the ATP injections/pills and his energy is improving (horrified).

Love and strength to you all <3
Macy Mae

LisaK's picture

LisaK

11/01/2013

Hi Macy Mae,
As an adult diagnosed 3 yrs ago, I can tell you what I found helps with hypoglycemia in the morning: At bedtime I eat a small bowl of whole grain organic cereal with milk. A handful of almonds/nuts works well, too. I keep a small bowl of nuts next to me on my bedside stand in case I wake at night and need them. I also found if I eat too large a portion at dinner (or anytime for that matter), my blood sugar really plummets in the morning! Not sure why, but it has happened enough times for me to "get it". Eating numerous small sized protein-rich, complex carbohydrate-rich meals works best for me. For really bad episodes of hypoglycemia I found meringue cookies (trader joe's) gets me out fast, but I MUST follow with a protein or I'll dive down again. Haven't needed them in a long time. Also, my endocrinologist started me on bio-identical DHEA cream, which I apply to my wrist once a day. It helped a great deal with dysautonomia, and seemed to even out my blood sugar, as well. Good luck, and keep "listening" to your body! That was the best advice I ever got when I was first diagnosed and still is my mantra. Our bodies' try so hard to regain equilibrium.... the least we can do is listen and appreciate the work it does for us!