Someone Pinch Me!

Lover's Cove on Catalina Island

I took this picture on one of my recent walks along Lover's Cove.  There was a westerly swell rolling in so I got some great shots of the spray at dusk.  The iPhone 4S camera is amazing!

My fingers are still tightly crossed as I amazingly continue feeling pretty darned well, two months after having started amitriptyline.  I've even taken up my old routine, walking every morning for a mile or two after I wake up.  I'm not able to do the steep hills I used to but hopefully I will soon. Today I started up one of the hills I used to hike up almost every day but didn't make it very far before I was huffing and puffing and my leg muscles felt like they were on fire.  I'm guessing my muscles are pretty atrophied after going two years without any real exercise.  I'm trying to take it slow but I'm so anxious to be back where I was.  The mere thought that I may be getting my life back is too much to hope for now.  I'm also hoping my renewed routine will help reverse the Osteopenia I was recently diagnosed with.  While I walk, I can also soak up plenty of vitamin D from the Southern California sun.

So, I may have found my cure.  Amitriptyline seems to have taken my pain and fatigue away for the most part.  Zoloft was working fairly well at controlling my pain but nothing, it seemed, could take away the fatigue, weakness and exhaustion.  I'm also still taking 2mg of Lorazepam to help me sleep and I'm not ready to give that up yet.  The thought of the disturbing dreams and nightmares I was plagued with when I first became ill is too terrifying to confront just yet.

I enthusiastically encourage anyone with ME/CFS to give it a try if you haven't already.  I realize that every one's disease is very different but it's always worth a try.  If you're like me, you'll try almost anything. 

 

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!

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.

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!

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!

Zoloft for Fibromyalgia Pain?

Fibromyalgia Trigger Points

As I posted Tuesday, I've been titrating off Zoloft and replacing it with Amitriptylene so I'm able to take the Fibromyalgia drug Savella.  According to drug interaction information, Savella should not be taken with an SSRI so this change, as inconvenient as it is, was necessary.

Late last year, while conducting yet another of my countless experiments with regards to curing this dismal disease, I also weaned myself off Zoloft (as well as all other medications) in order to follow the Alpha Nutrition Diet for Aching and fatigue (original post).  I noticed when I was completely off Zoloft, that some of my symptoms, which had been absent for some time, returned.  I started again to feel as though I had the flu.  I felt feverish, sweaty and my entire body ached as one does when afflicted with a high fever.  I attributed it, simply, as another phase of the ever changing disease, however, I did make a mental note that the symptoms had appeared almost exactly to the day that I stopped taking Zoloft.

I hadn't read anywhere that Zoloft was being used as a treatment for Fibromyalgia or ME/CFS so I didn't put much stock in the idea that the timing was significant.  The flu-like symptoms did go away, though I can't remember the relationship with when I began taking Zoloft again.

Last night my two year old daughter had one of her infamous sleepless nights which, of course, meant I got very little sleep as well.  Anyone who has Fibromyalgia or ME/CFS knows that lack of sleep is a killer.  Last night, as I lay next to my daughter in her small bed, afraid to move a muscle or even breathe too deeply for fear she would awake, I felt my leg muscles begin to throb and ache, then, the pain slowly spread throughout my entire body all the way to my finger tips.  In what seemed like minutes from when my body started aching, I felt sweat begin to form on my upper lip and the fever-like chills began.  I thought,  "Oh shit!  It's back!".  I'd been fortunate to be rid of these flu-like symptoms for some time and it hardly seemed coincidental that I had taken my last Zoloft two nights before.

I've discovered through reading others' experiences, that treatments for both ME/CFS and Fibromyalgia vary greatly from patient to patient.  One of the strangest and most baffling things about these diseases is the drastically different ways they effect each sufferer and therefore, the methods of treatment that are used.  Zoloft!  Who knew?  If my experiment with Savella doesn't pan out, I'll be going back on Zoloft for sure!  If I can't be completely cured, at least I know some of my symptoms can be relieved.

Amitriptyline & Savella for ME CFS & Fibromyalgia

I'm still going strong with the vegan diet (day 26) and I really think it's helping me.  I posted the question on a couple different forums to see if anyone else had experienced cessation of symptoms after switching to a plant-based diet and I got mixed responses.  Some reported improvements while another wrote she had quit a vegetarian diet after becoming sick and found that meat protein had helped her.  It seems that like so many other aspects of ME/CFS and Fibromyalgia, diet also effects sufferers very differently.

I had a visit with my doctor last week and we decided I would try the last mainstream medication for ME/CFS and Fibromyalgia I haven't taken yet, which is Savella.  Since Savella can't be taken at the same time as an SSRI, I'm tapering off Zoloft and starting on Amitriptyline, a tricyclic antidepressant.  After I'm completely off  Zoloft (in two weeks or so), I'll start taking the Savella and see what happens.  I'm not getting my hopes up since no other prescription medication I've tried has helped, but I feel I have to try everything that's "out there" before resorting to more extreme measures such as B Cell Depletion Therapy which involves toxic chemo-therapy drugs.  If this latest experiment fails, I'll be making an appointment for a consultation with Dr. Andreas Kogelnik at Stanford who is leading much of the research being done on B Cell Depletion Therapy for ME/CFS in the USA.  I have some links and other information about this subject on my website: ME/CFS & Fibromyalgia Awareness - B Cell Depletion Therapy.