Thursday, October 31, 2013

Part III: Almost Normal

Hello folks!

I'm so sorry about my long absence.  This time I've been away because I've been feeling good and have been out and about almost like a normal person.  I suppose you can say I've been making up for lost time.

I'm actually recovering from a nasty throat infection right now, but I'm otherwise doing well.

The biggest improvement has been with my energy.  After taking high doses* of CoQ10 (prescribed by my neurologist after a test confirmed I had low levels of it) for over a year, I have more energy than I've had in my entire adult life.  I don't make this statement lightly, and I'm definitely not saying that CoQ10 has "cured" me.  What it has done, however, is help improve the way my muscles make and process energy.

The improved energy allowed me to start exercising over the summer (with permission and specific guidelines from my doctors), something that would have been impossible just two years ago.  Unless I'm feeling ill, I exercise once a week for about 25 minutes with a trainer.  That's really my only formal exercise in a given week, but it's still 100% more than I used to do!

Before I agreed to work with my trainer, I interviewed him and made sure he understood where I was coming from physically.  Even though I looked young and healthy on the outside, I had the muscle atrophy of a 70 year old.  I also explained the instructions from my doctors.  No free weights because they're tough on the joints.  Bands are ok.  No heavy aerobic exercise because they could damage my muscles.  Low impact is fine.  He understood and really got it.

Around the time I started exercising, I started taking generic Plaquenil.  This medication is often prescribed for autoimmune diseases such as lupus and rheumatoid arthritis.  Though I can't tell for certain, I think this medication is helping me as well.  The joint pain in my hands seems to have decreased.

Fast forward to today.  I saw my neurologist this afternoon, and she confirmed my strength has increased.  This is the second visit in a row that she said my strength has increased, so I'm thrilled to know I'm on the right track.

We both think my improvement may be due to a combination of factors: the CoQ10, Plaquenil, and the strength building exercises I do with my trainer.  We also agreed that today would be my last visit with her as my neurologist because what I have is not neurological.  I will be continuing my followup with my rheumatologist and primary care physician.

That's all I have for now.  I've got to go to bed!

* Note added November 2, 2013:  I take 400mg of CoQ10 two times per day (total 800mg/day). 


AM said...

I noticed that when I added CoQ10 (100 mg. about a year ago), I also had an increase in energy. I'm worried yet excited, because on Monday I finally have an appointment with a neurologist. I have so many issues (as I'm sure you understand!) but lately I've had horrible neck pain, migraines, been getting dizzy, snapping awake really early in the morning for no reason, being "out of it" more than usual, having tremors, and more. I saw my chiropractor and my spine is in line so I don't know what's going on. Nothing has changed. I do have known back problems, but my physiatrist is being a pain about ordering an MRI of my neck. I spoke to my rheumatologist about these new odd symptoms and she was nice enough to refer me to a neurologist (even though it took them a month to call me and then at least 2 months to get an appointment). I just hope he takes me seriously (it's not anxiety causing all these symptoms like some doctors think)! Best of all, I lose my insurance around the end of this month. I'm going to try to make it through to January with no coverage but I don't see that working out too well. Sorry for the book I just wrote (lol), I just am glad people on here actually listen to and believe me. Also, I hope it's sort of comforting to you to know you are not alone and by sharing our stories, that we can try to help each other.

hayleyeszti said...

I'm sure we can all forgive your absence as you have a pretty good reason behind it! So happy to hear you are doing so well! Can I ask what dosage of CoQ10 you have been taking? I have been taking 30mg for about 8 or 9 months and my energy levels have increased slightly but not enough to make a big enough difference on everyday life.
I hope you continue making such great progress. All the best to you!

alyson said...

Hi AM - Thank you for visiting my blog. I'm so sorry that you've had to go (and are going) through so much. You're so very right that it's comforting to know we're not alone in our suffering and frustrations on our journeys to recovery. I really hope that you find answers. Don't give up!

Hi Hayley-Eszti Szucs - Thanks so much! I've been on 400mg CoQ10 two times per day (800mg total per day) for over a year now. I can't remember exactly how long for sure, but it definitely took me several months before I noticed an improvement. CoQ10 is very expensive, but it's worth it to me because it changed my life. I think of it as more of a medication than a supplement because of how much it helps me.