Saturday, April 28, 2012

I Can Walk Three Miles Per Hour!

The Top of Hermit Gulch Trail on Catalina Island

For the last two nights I've been sure to ingest my pills, not just remove them from the bottles and leave them on the counter.  I still had some anxiety yesterday but today I'm back to feeling pretty good - which is great!

I went for a walk today that included a short incline which I haven't been able to climb for most of the last two years.  It felt amazing!  I was so encouraged that I almost started walking up one of the hills I used to walk every day.  Fortunately I stopped myself, knowing that overdoing it could set me way back.  I kept to the flat surfaces for the rest of the mile and came back feeling tired, but not exhausted, fatigued, short of breath or in pain.  In the picture above, the highlighted area is the end of a trail I used to climb on a regular basis before I became ill.  I've missed the beautiful view from the top that includes seeing the Pacific Ocean from both the windward and leewards sides of the island.  The picture below was taken on the trail near the top.  On the day this photo was taken, clouds overflowed from the windward side. 

Almost to the Top of Hermit Gulch Trail
I have an app on my iPhone, Motion-X GPS, that records my average speed (among other things) which today was 3.0mph!  I can look back at other walks I've taken in the past and the average speeds were more like 2.5 or even 2.1.  A few months ago, not long after I got the app, I tried to up my walking speed and ended up in bed for about two days afterwards, feeling horrible.

I so hope this lasts.  I'm so afraid it won't.

Friday, April 27, 2012

Amitriptyline/ Ativan Reaction

Amitriptyline 50mg Tablets

I've been taking Amitriptyline for the last month and so far, it's helped me more than any other medication I've tried.  I did have an unsettling experience yesterday, however.  When I woke up, I immediately recalled a few bizarre, disturbing dreams I'd had that night.  I'd stopped having sleep disturbances, for the most part, some time ago so I found the dreams puzzling.  I've been taking Ativan/Lorazepam for the last two years to help me sleep.  Doctors have discouraged this and even scolded me for taking it since it's a "controlled substance" and "not to be used as a sleep aid" but that's a story for another post. 

Since I've been taking Ativan and Amitriptyline I've actually been sleeping quite well.  So when I woke yesterday morning I was confused but that feeling vanished the instant I walked into the kitchen and saw the pills sitting on the counter.  Apparently, I'd removed them from the bottles but never actually taken them.  This explained the dreams, as well as proving (to myself mostly) that I wasn't experiencing a placebo effect from either of the drugs. 

My day wasn't going very well, so conflicts with my husband, two year old and the hotel I manage, caused a completemental collapse.  At about ten am, I had a full blown anxiety attack complete with cold sweats, shakes and shortness of breath.  It had been quite a few years since I'd had one, though they were once a very  common occurrence (along with severe panic attacks).  I took a hot shower and calmed down quite a bit.  A couple hours later, however, another attack hit and I found myself laying on my bed, hardly able to catch my breath, shaking uncontrollably and soaked in cold sweats.  My husband, who was formerly an EMT/ fire fighter instinctively took my pulse and got a cool damp cloth for my head.

I've taken Lorazepam on and off for years and never had this kind of withdrawal reaction.  Maybe it was the combination of the two drugs together.  I don't know, but after I took 1mg of Lorazepam during the second attack, I felt much better. 

I recently read a theory that suggests FMS and/or ME/CFS sufferers may acquire a "chemical sensitivity".  In the past, I wasn't typically sensitive to medication side-effects as I am now, so it's a possible explanation.  I only know that I'll never forget to take my pills before bed again!

Thursday, April 19, 2012

Feeling Better and Better

Three Generations (that's me in the middle, feeling not-so-bad!)
Today I actually vacuumed my entire apartment (which is pretty tiny) and did some dusting!  When I finished, I was tired but not abnormally so.  I can't remember the last time I was able to do this.  

I had planned to begin taking Savella last week but I've put it off since I'm feeling so much better on just the Amitriptyline.  I wish I'd tried this a long time ago.  To anyone out there suffering with ME/CFS and/ or Fibromyalgia, give Amitriptyline a try!  It's one of the older tricyclic antidepressants (pre-Prozac) but I've read elsewhere that it was effective, so I guess I'm not the only one.

My parents have been visiting from NJ for the last month.  My mom kept happily commenting on how much better I seemed from when they first arrived (they flew back yesterday).  "You could hardly keep your eyes open" she commented on the phone today regarding the horrible state I was in. 

Could this really be it?  Have I found my holy grail?  I'm still very cautiously optimistic.  After all, I know it could be just a phase.  But in the meantime, I've been very slowly beginning to exercise again which is something I have missed greatly.  Before Fibromyalgia and ME/CFS took most of my life away, I exercised daily and was in pretty good physical condition.  I cannot say the same now I'm afraid.

On a less positive and completely different note, today I attended our small town's annual "Health Fair".  I don't have health insurance and they offer a wide variety of medical tests for very low rates.  For example, I had a bone density test, echo cardiogram and a thyroid/ kidney ultrasound for a grand total of $110!  Those tests would have cost way over a thousand at my doctor's office.  Everything came back within normal ranges except the bone density test.  The result was -2 which I discovered today is indicative of osteopenia.  Being that I just turned 39, this was a bit alarming, although it does run in my family.  My mother (who is 69 - sorry mom) has normal bone density but I once overheard a doctor describe my grandmother's bones as "chalk-like".  From what the technician told me today, bone density can be repaired by consuming more calcium but of course I'll be heading to the world wide web to check it out thoroughly.  I am so thankful though that my heart is in good condition!  I sometimes worry because when I'm not feeling well, one of the symptoms I experience is shortness of breath and the feeling that my heart has "skipped a beat" and it can be scary.

Monday, April 16, 2012

Amitriptylene is Rocking My World!


OK, I know I didn't have much positive to say about Amitriptyline in my last couple posts but I've changed my tune completely.  Between the vegan diet and Amitriptylene, I'm feeling better than I have in a long time.  Although, I'm not sure which is actually responsible for this change, if it's a combination of the two or something else entirely. 

I took this picture on my walk to Lover's Cove today, the first time I've taken a walk purely for exercise in weeks.  I put my earphones on and just WALKED!  It felt great!  I've also been taking fewer and shorter naps.  My muscles and joints feel stronger and are in less pain.  I'm trying not to get my hopes up and set myself up for disappointment later but I can't help it.  If it just ends up being a "good week" I'll deal with the disappointment later. 

My original plan was to taper off Zoloft, start Amitriptylene then, when the Zoloft was completely out of my system, start Savella.  I'm completely off Zoloft and up to a therapeutic dose of Amatriptylene but I'm holding off on the Savella since I seem to be feeling pretty well.  After all, I don't want to take anymore drugs than I have to. 

I'm feeling really well about the vegan diet too.  The stomach discomfort I had at the beginning is completely gone.  Oh how I pray this lasts!

Thursday, April 12, 2012

Life as a Paper Doll


Two days ago, I spent the early afternoon with my mom and two year old daughter.  It was a beautiful, warm, sunny day for  Avalon's annual Spring Festival.  Being the quintessential small town street fair, it was complete with food and craft vendors and a tiny petting zoo. 

I wasn't surprised to see quite a few people I knew there, people who could have been friends if things were different, but today I avoided their glances and maneuvered throughout the crowd so as not to be noticed.  During my drinking days I had became an expert at avoiding people by cutting through alleys and hotel lobbies rather than to walk down main streets.  This time though, the motivation was very different.  Rather than hiding from those who may have seen my drunken antics the night before at the local bar, I simply didn't have the energy to smile or speak and didn't want anyone to misconstrue my attitude as personal indifference.

My heart felt heavy as I watched parents of other children in my daughter's toddler pre-school standing together chatting and laughing as their children played with one another.  I would loved to have been part of the group, but laughing expends too much of the very limited energy I have.  My daughter held my hand as we  slipped past the group and her little head craned to see her classmates.  After we passed them, my daughter waved her hand and quietly said "bye bye".  My heart sunk and I felt like the worst mother on the planet. 

When I thought I couldn't possibly get any more depressed, I looked out into the harbor and saw Perdida, in my mind, her two, tall masts, her teak trimmed cockpit combings all upon her beautiful turquoise hull, floating so gracefully in the harbor as I had seen her so many times before.  Now the tears began to well.  Images of my life while living aboard her scrolled through my mind.  I tried to stop them but the images kept coming.  It felt as though I were remembering a movie I'd seen.  The person in that movie looked a lot like me but - it wasn't.  It couldn't be.  That person was strong and healthy.  That person was able to pull herself up from our small boat up onto the deck of Perdida.  She was able to crawl around the engine room and reach through the bilges to make repairs.  That woman could grind a winch handle to raise the sails all the way to the top of the mast and even cook a meal while winds howled and the hull pitched.  I couldn't do any of those things.  I suddenly realized that I wasn't a complete person anymore.  I was like a paper doll with only two simple dimensions trapped in a two dimensional world but with a view upon the full world led by so many lucky people. 

My mother had gone to pick up fish tacos at one of the stands and my daughter and I sat near the very small petting zoo (which included two chickens, one rabbit, one tortoise and a couple of lizards) while my daughter reached her little hand through the fence, trying to pet the bunny who never did come close enough.

We finally made it home and my entire body was throbbing with pain.  I snapped a few short words at my mother and lay down on my very familiar couch, which, within the last two years has become a virtual appendage and turned my heating pad on high.  Tears were streaming down my face and self-pity set in for the rest of the night.  I so desperately hope this new medications takes some of this pain away.

Wednesday, April 4, 2012

Amitriptyline is Kicking My Butt!


I've been taking 100mg Amitriptyline for three days now and I and I feel like I've been living in a dense fog - denser than usual I should say.  I'm so tired and zoned out, I can hardly do anything.  The prescription is for 150mg per day so as soon as I feel more normal, I'll have to bump it up even more, which I can't say I'm looking forward to.  I've been off Zoloft for three days, so tonight I'm going to take the first dose of Savella from the titration pack.  I have a feeling this week is going to be difficult until I've adjusted to the new medications.  I've been having problems sleeping again complete with nightmares and disturbing dreams.  The body pain and muscle weakness haven't gotten any better either.  I really am tired of this medication cha-cha, withdrawal symptoms while going off, side effects of the new meds.

Wow - I'm just full of positive words today!