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!

Vegan Diet for CFS & FMS - Day 16

I have to admit, of all the different diets I've tried, this is the easiest to stick with.  Since I've been mostly vegetarian for years, cutting out dairy wasn't as hard as I would have thought.  There is actually a very wide variety of vegan food choices including pasta and marinara sauce, peanut butter & jelly sandwiches, humus and spinach wraps, brown rice with cooked vegetables and olive oil and many more meals don't contain any meat or dairy.  I try to use organic ingredients when possible because I still believe that there's something to the theory about chemical sensitivity in food and it's connection to autoimmune disease.  I can't just dismiss the presence of chemicals in our food supply as having no deleterious effect on the health of the general public.  The increase in diagnoses of strange unexplained diseases (such as Fibromyalgia & Chronic Fatigue) is unequivocally on the rise.  The statistics are indisputable, but I digress.

I still believe my experiment with diet change is having good results.  They aren't drastic by any means but I do feel as though I have more energy and I even lost five pounds.  I hope that as I continue eating a plant based diet, the results will become more noticable.

To change the subject a bit, I'm also experimenting with an over-the-counter supplement called Zyflamend by New Chapter which was recommended to me by Dr. Richard Podell in New Jersey.  The capsules are quite expensive so I want to know they really work before investing any more money in them.  Zyflamend is a supplement that was created to address joint and muscle pain (among other ailments).  I started taking two capsules a day back in January and I felt as though my muscles didn't feel as weak as they had but I couldn't be sure the Zyflamend was responsible.  I'd cut down to one capsule a day for the last couple weeks to extend my supply.  I've been noticing increased muscle weakness and knee pain.  Yesterday I took my last capsule.  If the muscle weakness and joint pain continues or gets worse, I'll try taking the Zyflamend again and see if it was in fact what had alleviated the weakness and pain initially. 

Here's the link to the Zyflamend site if you want to check it out.
http://www.newchapter.com/zyflamend

My Messy Apartment is Driving Me INSANE!

Are any other Fibros out there sick and friggin' tired of their homes looking like pig sties?  Unless you are fortunate enough to have a husband/wife/roommate who cleans, you probably have an abode that looks something like mine.  Laundry piles up, dishes pile up, dust piles up, etc, etc.  Sometimes when I roll out of bed and walk into my living room I want to cry.  The floor hasn't been vacuumed in weeks, there are toys scattered all over the floor and overdue bills and other neglected paperwork piled on practically every surface.  I can't lift the full laundry basket so I have to wait till my husband is around or make several trips to the washing machine with small arm-fulls.  By the time I've done that, I'm spent.  On a good day I can recuperate for an hour or so and continue with chores.  On a bad day, that may be all I get done.  I may not even get the clothes from the washer to the dryer.

I know other ME/CFS/Fibromyalgia sufferers can understand how incredibly frustrating this is.  I was never a neat freak by any means, but a messy home gives me so much stress and I don't think the excess dust does me any good either.  If I had the money, I'd certainly hire a cleaning person once a week or so but since I can no longer work, that's out of the question.  I just have to do what I can and put blinders on for the rest, although that's a whole lot easier said than done.

Graded Exercise - How NOT to Do It

I try to get out and walk every day, even if it's not very far.  I had just started trying "graded exercise" which I've read is recommend for Fibromyalgia sufferers.  Basically, the concept is, to increase your exertion levels in very small increments over a long period of time.  The theory is, that this type of slowly increased, low-impact exercise, will not cause ME/CFS & Fibromyalgia symptoms to intensify as regular exercise usually does.

I bought an app for my iPhone that measures distances walked, average pace, altitude, where you walked and more, using GPS.  Just as a side note, I really like the app and recommend it highly.  It's called MotionX-GPS.

Anyway, the app can be set to give an auditory update every five minutes with average speed, distance traveled and time passed.  I wanted to keep track of how fast I was walking, since it's often hard for me to judge, and increase my speed slowly over time. 

I began walking, with the new app on my iPhone last week.  I was having a pretty good day, so I decided to do a 1.5 mile walk.  My average speed was 2.4 mph.  The next day I walked the same route and had a similar average speed.  The day after that I decided to try to kick my speed up a bit.  It seems I got a bit over-confident.  I pushed myself and tried to maintain 2.7 mph.  Of course, people as old as my parents were flying by me like I was standing still, but I had to really push my leg muscles to keep up that pace.  I was really proud of myself and managed to repeat my performance the next day but that was the end of that. 

I guess the two 2.7 mph days, pathetically, knocked me out.  I was extremely fatigued and weak for days after.  That was six days ago and finally, just today, I was able to go for a walk.  It was a little under a mile and my speed was more like 2.0 mph and that was as fast as I possibly could have walked.  My muscles felt weak and shaky and I kept loosing my balance.  If I'd tried to walk any faster I probably would have fallen down.  I wonder how long it'll take before I'm able to walk normally again.

The lesson here is, in graded exercise, when they say very small increments, they mean VERY small.

Many Many Drugs - Prednisone

Before my last doctor's visit a week ago, I sat down with all my medical records (a very thick file) and compiled a spreadsheet of all the medications I've been prescribed since this nightmarish ordeal began two years ago.  It took a while to organize all this information since dosages on some of the drugs had been changed several times.  When I was finished, there were still some holes in my timeline because I remembered that at times, my doctor had changed dosing over the phone and I hadn't written it down.  Anyone who has ME/CFS or Fibromyalgia knows that if something doesn't get written down, it's forever lost in the fog that took over where your brain used to be.

Two years ago, when I first visited a doctor about my strange set of life-altering symptoms, he ordered, what I didn't realize at the time, would be the first of many rounds of blood tests.  He guessed that I was having a response to some sort of inflammation.  He suggested I try aspirin to bring down the inflammation until the blood tests came back with some answers.  Everything came back normal including the Rheumatoid Factor except for the ANA titer which came back positive with a speckled pattern - 1:36 . 

When I went back a couple weeks later, my symptoms had gotten worse and more blood was drawn.  The doctor I saw this time (from the group) prescribed Prednisone at 60mg per day for five days then 10mg per day for fifteen days, then 5mg per day for ten days.  A few days after I started the Prednisone, I actually felt a lot better and was able to return to many of my previous activities including, walking up two miles of steeply inclined roads per day.  But, about a week into the lowered doses, my symptoms returned and I was experiencing a lot of pain and severe fatigue again.

My doctor prescribed another high-dose round of Prednisone which was effective but short-lived as before.  She explained that Prednisone was not a long-term option at this point due to the toxicity of the drug, so I went back to feeling sick and returned to the doctor once more.

Tune in next time for...drug number two! 

Trying to Get Off Cymbalta?

The carb-free thing didn't work out but I'm not convinced that it isn't a diet issue that's causing my problems.  I've found some information on "delayed pattern food allergy" on the web and although I may be grasping at straws it sounds like an interesting theory to me.  I ordered a book by Dr. Gislason which explains the very involved process for discovering if you may in fact have a food allergy.  According to what I've read, it may take many months to come to any realization but if it works it's easily worth the time.

To prepare for fasting, which is the first step in the process, Dr. Gislason suggests that you rid your body of all prescription medications (as well as nicotine, caffeine & alcohol among other things).  I've been on SSRI's for about fifteen years to treat my Major Depression, so I'm a bit apprehensive about not taking them since I've experienced some severe depression in my life.  I've also had some experience with SSRI withdrawl so I know not to stop taking them abruptly.  I'm taking 60mg of Cymbalta once per day, so my plan was to take one dose every-other-day for a week or two then take one every third day, etc.  Since the medication comes in capsules, they can't be split in half.  I've used this method to wean myself off SSRIs before and have never had any problems.

Three days ago I intentionally skipped my Cymbalta dose before I went to bed, planning to take a dose the next night.  I woke up the next morning hardly able to move.  My muscles were so weak I could baredly lift my head from my pillow to drink some water.  As the day progressed I became more and more nauseated and I shivered with cold sweats.  It reminded me of my drinking days and the horrible hang-overs and alcohol poisoning I suffered all too frequently.  Unfortunately, my sickened state prevented me from realizing the source of my suffering until later in the evening.  I took a dose immediately but the damage was already done.  The next morning the withdrawl symptoms were gone.

I have NEVER experienced SSRI withdrawl symptoms that severe or sudden before.  In the past it's taken two or three days before I started to get "brain zaps" and feel dizzy or nauseated.  I admit that I was getting over a cold virus so that may have had some effect but I don't really think so.  My doctor prescribed 20mg tablets and I've been taking two of those once per day for the last two days and I haven't experienced any withdrawl as of yet.

If anyone out there is planning on quitting Cymbalta, be careful!  Also, don't let your prescription run out and think you'll just call your doctor tomorrow.  If you do, you may suffer severely for it and I wouldn't wish that on my worst enemy.