Fibro Brain Fog, Thick as Ever

I've been on a strictly vegan diet since March 1st, almost three months.  I've also been taking 150mg, now 125mg of amitriptyline each day.  As I've written before, I'm been feeling better than I have in two years.  I'm able to exercise and do things that I couldn't even think about doing before. 

Yesterday I painted the wooden table out on the patio of the hotel I manage.  I was able to go down the stairs to our maintenance closet, walk back up the stairs holding a quart of paint and paintbrush and still have enough energy to paint the table.  After that was completed, I was even able to water the plants and do some pruning.  A few months ago, I wouldn't have been able to descend the stairs and climb back up without experiencing a lot of pain and shortness of breath.

I'm not sure what's responsible for this huge change in my condition and I sometimes fear it's simply a remission that will run it's course and eventually end.  After all, my diagnoses of Fibromyalgia and ME/CFS (Chronic Fatigue Syndrome) were never proven.  I always wondered if it were something else I was afflicted with but I could never afford the blood work to check for NK cell function, viral titers, VO2, RNase L and cytokines count.  I've recently read that these bio markers go along way towards scientifically "proving" these diseases.

My physical condition has improved tremendously but my cognitive impairment stubbornly continues to fog my brain.  I'm able to do so much more, but my memory and recall are horrible.  Unlike most people, I was always good at remembering names and faces.  In fact, I've embarrassed myself on several occasions by walking up to greet someone by name, who had no idea who I was.  At least that won't be happening any time in the near future. 

Now when I'm having a conversation with someone, I find myself not having the words to convey my thoughts.  It's almost as though I have a stutter.  I'll get stuck on a word like a broken record and have to stop speaking completely to "re-boot" my brain, then start the sentence again.  I'm sure people don't notice it as much as I do, but I feel really self conscious when it's happening.  I also find myself not being able to remember simple words.

Don't get me wrong, I'm not complaining!  I feel so lucky that I have this time to do some of the things I haven't been able to do in the last two years, especially spending quality time with my two year-old daughter.  I'll never again take my good health for granted, knowing that I could loose it at any time.

Another Horrible Week

My next post was supposed to be a continuation of the long list of drugs and experiences I'd had with those drugs during this ordeal.  I must, however, take a short detour with this post as it may have some relevant information to add.

My week started out this past Wednesday.  My doctor had prescribed Welbutrin, 150mg per day to address my severely, worsening depression and Prednisone as a third experimental trial to see if the previous results I'd had (see last post) would repeat themselves  The Prednisone dosage was to be as follows:  Day 1 - 60mg, Day 2 - 50mg, Day 3 - 40mg, Day 4 - 30mg, Day 5 - 40mg - Day 6 - 0mg, Day 7 - 40mg, Day 8 - 0mg, Day 9 - 40mg, etc.and to follow that dosing till I spoke to him.

The next afternoon, after having taken both medications my symptoms began to worsen.  Many of my old ME/CFS/Fibromyalgia symptoms that had been under control for about the last two months, came back with a vengeance.  I felt the all-over body pain creeping in and as the hours ticked by, they got worse.  I started to feel as though I had a fever (but of course I didn't actually) and coordination and energy dropped.  I was so depressed.

At first I thought that it may have been that I had missed a dose of Zoloft the night before.  When I had started taking the Zoloft (again) two months ago, my pain had mysteriously gotten much better.  My condition in general was better and all from a low 100mg dose of Zoloft it seemed.

I got back on track with the Zoloft and hoped to see a change after a couple days, but none came.  The pain and feverish feeling (on top of the already present weakness & fatigue) were getting worse if anything.

Then yesterday, I don't know what the hell happened.  I wondered if I had mistakenly gotten caffeinated coffee (a big no-no for me) that morning during my daily .5 mile walk to Dunkin Donuts because about an hour after I got home, the you-know-what hit the fan.  My mental state degraded, gradually escalated into a full-blown anxiety attack, complete with shaking limbs, heart practically beating out of my chest, that feeling that I was completely out of control and may just die any moment.  I couldn't talk to anyone or keep my mind on a single thought.  This lasted for hours (the severity waxing and waning) until I excused myself with an Ipod & headphones and locked myself into a room, lyed down on the bed, listened to Brahms and tried breathing exercises.  Oh yeah, I also took .5 mg of Ativan which is what I think finally brought me out of it for the most part.  As a result of my anxiety and just plain being out of my mind, I had missed a Prednisone dose (30mg).

The day wasn't over though.  My husband had flown in from LA that day after not having seeing me and our daughter for about six weeks.  We ordered pizza and sat down to eat.  I still wasn't feeling well and was not (to put it mildly) the life of the party but it seemed that the worst of my anxiety was over.  At one point I leaned my head over toward my husband's shoulder for some comfort.  The moment my head was down, my world began to spin out of control.  I'm talking full vertigo here - didn't know which way was up.  I also felt as though I would get sick at any moment.  I told everyone I needed to lay down and somehow stumbled to the couch as the worst of it was subsiding.  As I layed down, I still felt really dizzy and nauseated, but the spinning had stopped.  I remembered the missed dose of Prednisone and asked my mom to get it for me thinking I may be having withdrawal.  My dad took my blood pressure and it was 113/72 which is on the low side, but my pressure tends to be lower.  In about thirty minutes the dizziness got a little better and I was able to get up (with assistance) and be led slowly up the stairs to bed. 

The dizziness and subsequent nausea plagued me all night long.  When I got up to use the bathroom in the middle of the night I lost my balance and almost fell twice.  This morning, I don't feel too dizzy but weak and unsteady on my feet. 

I'll be calling my doctor as soon as his office opens.

Plan B

The episode of extreme fatigue I wrote about in my last post has passed.  Now it's just the normal fatigue and pain I've been experiencing for the last two years. 

Two days ago, I called the owners of the hotel I manage and told them I would be taking a three month medical leave.  When one day last week I discovered that I had taken at least two reservations and had no recollection or evidence of them anywhere, I realized that my cognitive impairment was much worse that I though.  I called my good friend who used to co-manage the hotel with me a few years ago and asked him if he would like the job.  When he said he would, I called the owners and let them know what would be happening.  They were very understanding and thought I should do whatever I needed to get better.  They said they didn't want to loose me as a manager and I sincerely hope that will not be the case.

Now I don't have a job.  I'll be completely dependant on my husband financially and the thought of that makes me sick.  I have an Etsy shop where I sell my art and jewelry (www.etsy.com/shop/thorawish sorry for the shameless plug) but I don't make nearly enough to completely support myself.  I've been working on it whenever I have the energy and my sales are up so I can only hope they continue.

I've been starting to admit to myself that I may not have a normal job for some time.  I've been wracking my brain thinking of a way I can earn a living from my couch.  A friend suggested I check out SEO (search engine optimization).  There are quite a few SEO telecommuting positions available out there from what I've seen on job-search sites.  I have a BFA which won't do me much good in this field but I found an on-line certification program in Internet Marketing at UC, Irvine.  It's $550 a course and you need to take six courses, I think, to receive your certification.  I hate to get into such debt for something that may not pay off but I'm not sure what else to do.  It's really scary and depressing.  I need to be able to earn a living somehow.  It's not like I have disability insurance or anything and I'm sure I couldn't get SSDI.