Fibromyalgia ???

Antidepressants Are NOT Happy Pills!

noreply@blogger.com (Perdida) — Tue, 18 Dec 2012 03:57:00 +0000

Being that the title of this blog is "Fibromyalgia???", it may seem off-topic to have a post about depression and antidepressant medication here, but the two subjects are actually very closely related. I take antidepressant medication to treat both Depression and Fibromyalgia/ME/CFS and I know there are many ME/CFS (Chronic Fatigue Syndrome)/Fibromyalgia sufferers who take antidepressants to treat symptoms of those diseases and have never had depression.

Happy pills? Really? A few days ago, I actually heard someone utter these insulting words while referring to antidepressant medication, which seems to imply that a person who takes them is weak and unable to cope with the natural ups and downs of life.

About fifteen years ago when I was finally diagnosed with Clinical Depression and prescribed antidepressants, I experienced this ignorant thinking almost immediately from the people I shared my story with. Later, I learned that it wasn't worth the unintentional insults and inevitable hurt, so I stopped telling people about my depression all together. A friend who was going through a similar trial encouraged me to read the book "Listening to Prozac". I don't remember many details from the book but I do remember that far from answering any questions, it only added to the insecurity I was feeling. Was it acceptable to fundamentally change my personality with prescription drugs in order to alleviate profound emotional pain? The question remained unanswered at that time, but through the years that followed, the answer was revealed after experiencing destructive pain and life-wasting apathy. I wasn't fundamentally changing who I was by taking antidepressants. I still experienced pain, sadness, grief and depression but somehow I could handle it without "falling down the black hole" (a phrase I use to convey the unexplainable darkness of depression).

Countless artists, composers and writers have used their mental disease as a muse. As an artist, I admit that depression and malaise have fueled many works that may not have been born otherwise. But would I sacrifice all other aspects of my life, or my life itself for the ability to create amazingly deep, dark art? If anyone reading this has experienced true, profound depression, you're shaking your heads right along with me. I would absolutely never choose the torture of depression over feeling even a little peace and anyone who says different simply hasn't been there.

On the other side of the coin, many have used alcohol or illegal drugs, both consciously and unconsciously, to cope with their mental illness. This is of course known as "self-medicating" and has been done since the beginning of humanity. In many ways this method seems more socially acceptable, at least that's been my experience. Having given up those fuel sources myself some time ago, I'm currently using only prescription medications to manage my illness. So, do I cease to be a legitimate artist without my booze and dark moods?

Many of the artists who marinated in the black hole of depression or preferred an alcoholically altered mind-state rather than facing reality did produce some great works, but at what expense? Seeking help for a mental illness is absolutely not a sign of weakness. Those who are able, through an unimaginably heavy veil of blackness, to summon the courage to call a doctor or tell a family member that they need help, should be applauded for their bravery, not insulted with flippant remarks from those who cannot possibly understand their suffering.

The Terrifying Nightmares of ME/CFS & Fibromyalgia

noreply@blogger.com (Perdida) — Fri, 09 Nov 2012 20:00:00 +0000

photo by Kristy Throndson, Nightmares of Fibromyalgia and ME/CFS

Last night, as I was getting ready for bed, I took out my pills as I do every night. After cutting them into their correct doses, I put them down on the counter and went to fetch some water. I thought I'd swallowed them, but apparently, I never did. I found them still sitting on the counter at 2:30 am after what seemed like hours of tortured sleep. I was so frozen with fear that it took a couple of minutes before I could convince myself that it was safe to put my feet on the floor and walk to the kitchen for a glass of water. I was very confused as to why this was happening when I discovered my pills sitting on the counter. The 1.5 mg of lorazepam I take daily before bed seems to push me through the perpetual disturbed REM or dream, sleep and into deep, restful sleep. I've been taking it for about two years so, thankfully, I haven't experienced these nightmares on a regular basis for some time.

I call these episodes nightmares because I don't really know another way to describe them. However, they're nothing like anything I experienced before I became ill. Maybe the term "night terrors" would be more accurate but I don't really understand the difference between the two. I may need to do more research on this subject.

My night starts with about thirty minutes of tossing and turning before I finally nod off, then, it gets scary. I fall into a disturbing world that seems so frighteningly real. The twisted nature of these dreams is a topic for another day, that is, if I ever feel comfortable writing about it. I won't go into too many details but in one example I can remember running, in darkness, across an endless field covered with the sculls and bones of babies that crunched under my feet as I desperately searched for solid ground. I awake for a moment or two sweating and scared. I fall back to sleep and into the same frightening scenario. The cycle of restless "sleep" and awaking repeats itself for what seems like hours but may only be an hour or so. I have no idea how much time elapses while I'm asleep and a specialist I saw last year wanted me to have a sleep study done. I would have liked nothing more but the two to three thousand dollar cost and my lack of health insurance made it impossible. This specialist told me that sleep disturbances and nightmares were often a symptom of Fibromyalgia, ME/CFS and I have read this from other sources as well.

I've tried to describe these experiences to doctors but the true nature of these nightmares cannot be communicated somehow. The sick feeling I get in the pit of my stomach is truly nothing I ever experienced in the past. The closest thing I can compare them to are the nightmares I, and so many others I'm sure, had as children. I remember being terrified to go to bed.

It was very disturbing for me to realize how close I still am to that world of Fibromyalgia and ME/CFS. Although I consider myself in remission, it is obviously a very thin layer of ice I'm existing on. If I were ever unable to get my medication, I'd fall right through to where I was six months ago. This thought is almost more terrifying than the nightmares themselves.

What NOT To Say To Someone With ME/CFS and/or Fibromyalgia

noreply@blogger.com (Perdida) — Mon, 05 Nov 2012 19:00:00 +0000

photo by http://www.flickr.com/photos/allesok/

Recently, I was helping a friend explain the debilitating nature of Clinical Depression to her family.  She's been suffering severely for over a year and none of the medications or other therapies have helped her. Since her family members had never experienced the profound effects of depression, they were unable or unwilling to put themselves in her shoes. It reminded me of how similar Depression, ME/CFS and Fibromyalgia are, in that, all three are virtually invisible both physically and physiologically. Since there are no medical tests that can really validate their presence, or visible rashes, skin discoloration, etc, the existence of these illnesses are experienced only through the perspective of the sufferer. If the individual doesn't have a compassionate, well-educated family, their experience can be ever so much worse. A strong support system is vital to anyone with Depression, ME/CFS (Chronic Fatigue Syndrome), Fibromyalgia and many other maladies.

Following is a a short list (to be amended in the future) of seemingly harmless comments that should never be made to someone who is suffering from Depression, ME/CFS (Chronic Fatigue Syndrome) or Fibromyalgia (and probably many other diseases as well).

1) "Well, you look great"

These can seem as though they would be words of encouragement to someone who is ill. After all, who doesn't like being told they look good? In this case, though, it's one of the most hurtful things that can be said as it seems to reinforce the feelings of loneliness and lack of empathy. Looking great does NOT mean feeling great. Saying that someone looks great is often interpreted as a brush-off and a conversation stopper. I can't count the number of times I've heard this.

2) "It's probably just the change of seasons. You'll feel better when Winter is over."

Minimizing a person's pain implies that you are not taking their suffering seriously.  This comment is also a conversation stopper. At this point, the sufferer, after attempting to reach out for help, feels frustrated and hurt. They being wondering, "Did she even hear what I just said?".

3) "You'll feel better once those baby hormones are out of your body."

Of course, this is a comment only a specific subset of sufferers will hear. In my case I heard it many times since I first became ill while I was pregnant. Again, it implies that the sufferer is over-reacting to common ailments everyone experiences.

4) "I know someone who had Fibromyalgia and they got better by pushing themselves to exercise".

I heard this several times and it was among the most painful comments. Since there is a very wide range of symptoms and severity of symptoms, one case of Fibromyalgia (or Depression, ME/CFS, etc) simply cannot be compared to another. In my case, exercise would only hinder my recovery. I tried to exercise on those rare "good days" and it always backfired on me in a BIG way. See my post "Graded Exercise: How NOT To Do It". Saying something like this to someone implies that they are lazy or just not trying hard enough. For a very self-motivated person like myself, this really hurts.

With all this being said, I realize that these comments are usually uttered with the best of intentions. In fact, I may have been guilty in the past of making some of them myself. However, after experiencing the full wrath of ME/CFS, Fibromyalgia and Depression, I will certainly never make that mistake again.

What comments have you heard that really hurt or upset you? I know I've missed many. Please comment below, I'd love to hear your opinions. I'll certainly be amending my list.

Wishing health and peace to all, especially those who were effected by Hurricane Sandy.  New Jersey is where I was born and was my home state for many years. My heart is right there with you all.

Fibromyalgia & ME/CFS (Chronic Fatigue Syndrome) Information Site

noreply@blogger.com (Perdida) — Fri, 26 Oct 2012 17:39:00 +0000

I recently updated my Fibromyalgia & ME/CFS Awareness website. I spent a long time researching these subjects while I suffered with pain and profound fatigue and weakness. I'm currently in remission thanks to 75mg of Amitripylene and .75mg of Lorazepam per day. I only hope it lasts.

Please visit my website for information about Fibromyalgia & ME/CFS (Chronic Fatigue Syndrome) causes, research, clinical studies, symptomology and more.

Wishing all who are suffering, a reprieve from these horrible diseases. If there are any suggestions about other things I should include on my page, please feel free to comment here.

Statute of Limitations on Medical Bills

noreply@blogger.com (Perdida) — Mon, 10 Sep 2012 04:09:00 +0000

A couple weeks ago I received three envelopes in my mailbox from a collection agency. This fact itself was not shocking as invoices of mine have been sent to medical collections several times since I became ill. The shock came when I realized they were for Dr. appointments I'd had before I even became ill and while pregnant with my daughter.  Due to my low income at the time, I'd qualified for Medi-Cal which is medical coverage that's subsidised by the state of California. Many low income women in California qualify for this program (which incidentally, ends one month after your child is born). It's a great program but, like so many others, has it's definite flaws.  The invoices totaled over three thousand dollars for services that took place in 2009, almost exactly three years ago.

At first I thought, "how can they be demanding money for something that occurred so long ago"? I did some research and found that there is a statute of limitations on the collection of medical bills. It varies from state to state but typically falls into the three to four year range. California has a four year statute of limitations on the collection of medical bills. When I discovered this, I felt beaten for sure. I dusted off my pre- Fibromyalgia/ME/CFS medical files which are in with the rest of my life's paperwork. When I became ill I had to start storing all of my medical records that delt with these new illnesses in their own box since they took up about as much space as all of the other paperwork combined. Though I'm normally pretty good about filing important documents, I'd apparently cleaned out my files from my pregnancy because I couldn't find the invoices in question.  So silly of me to think that since the invoices had been paid three years ago, it was a done deal. Lesson learned...don't throw away invoices even if they've been paid in full and the accounts have supposedly been closed.

My story does have a happy ending through, I think. I collected all of the information I had and made appointments with the advocate I'd worked with during my pregnancy and a representative from the billing department. I also contacted my bank, Medi-Cal and the billing service my doctor's office uses and asked for copies of records to be sent. I finally convinced the billing department to drop the case - I think. The last time I spoke with someone there, I was told they had recommended the invoices be "written off".  I haven't heard anything but I wouldn't be the least bit surprised if next month I get the same invoices from the collection agency. It seems nothing ever gets done correctly the first time. That's been my experience anyway.

Yoga for ME/CFS & Fibromyalgia

noreply@blogger.com (Perdida) — Sun, 22 Jul 2012 00:24:00 +0000

While I was enduring the worst of my ME/CFS (Chronic Fatigue Syndrome) and Fibromyalgia, I could barely lift my arms to get something off a shelf, never-mind, even contemplate exercise. I listened to many people attempt to enlighten me with tales of a friend, sister or cousin who had cured themselves of Fibromyalgia through exercise, by pushing through the pain.

The emotional torment comments like this caused can hardly be described and I'm sure if you suffer from these diseases as well, you've experience this phenomenon countless times. I did, on occasion, lash out after hearing this well-meaning advice by trying to explain that I was practically unable to walk up a flight of stairs, and that pain had absolutely nothing to do with it. Desperately, I tried to convey the debilitating shortness of breath, shaky muscles and all-over weakness that consumed me, but I quickly realized that if the person I was taking my frustration out on hadn't experienced this sickness, they simply wouldn't understand. I learned to put up an emotional wall, attempt to let the comments bounce off it and dredge the depths of my sickened soul for a reply.

"Wow, that's really great that your [friend, sister, cousin, etc] was able to get better." I found myself saying through clenched teeth.

I've always had, what I admit at times, has been a stubborn need to feel and appear "strong". Self-sufficiency was something I had prided myself on until the unwelcomed arrival of these mysterious diseases in my life. I'd recently become sober, exercised regularly and ate fairly well. I didn't smoke, eat meat or even drink caffeinated beverages. I couldn't understand how my body, that I took pretty good care of, was turning on me.

My diagnosis of Fibromyalgia was augmented with ME/CFS (Chronic Fatigue Syndrome) in December of 2011. I began to realize that it was probably the ME/CFS piece of my illness that caused the sometimes paralyzing exhaustion and prevented me from being able to exercise. Any attempts I made at exercise were rewarded by even more profound weakness that lasted days after my foolhardy attempts to be normal.

I'd read several blogs and articles about Yoga and how it had helped many through the pain of Fibromyalgia. I'd practiced Yoga sporadically throughout my adult life so I was familiar with the basics. On one of my grueling trips to the mainland, I somehow managed to shuffle my way to the exercise equipment department at Target and picked up a DVD, Yoga for Beginners, by Rodney Yee. I looked at the image on the cover and laughed at the thought of myself practicing even the simplest of poses. A few days later, I popped the DVD in the player, tried the first pose and fell to the floor exhausted. The DVD went back into the box where it stayed for another year and a half.

Floor Yoga Stretches I do that Help My Fibromyalgia & Chronic Fatigue Syndrome Symptoms

For a time after this experience, I gave up any attempts at exercise and stayed in my bed or on my couch where, if I rested and took my naps every day, I could muster enough strength to do some of the things I needed to do. Any diversion from this routine left me bed-bound for days or even weeks.

I did, later, discover a way that Yoga could be of help to me. During the holidays last year, I began experiencing unusually strong back pain. The only thing that seemed to help was to lay on the floor and stretch it out. It was then that I remembered the Yoga stretches that are typically done at the end of a Yoga workout. Every morning I sat on the floor and gently stretched my muscles, holding the poses for as long as it felt comfortable. I actually began to notice a considerable reduction of back pain. Of course, it should go without saying that you should always check with your doctor (of which I am not one) before starting any new exercise regimen, especially if you have Fibromyalgia and/or ME/CFS (Chronic Fatigue Syndrome).

A few of the stretches I do are pictured above but any book with yoga poses or a Yoga DVD should have instructions on how to properly and safely perform the poses. My philosophy was to do the stretches I felt comfortable with and skip all the rest. The most important factor when it comes to exercising with ME/CFS and/ or Fibromyalgia is to NOT push yourself. The moment you begin pushing yourself beyond what is comfortable will be the moment you set yourself back in your recovery. I don't care what ANYONE says about other people having "pushed through the pain". If you have any issues with chronic fatigue and exhaustion, this strategy simply WON'T work.

Insidentally, the following post in Psychology Today on April 24, 2012, had the same effect on me (and countless others) as the stories well-meaning aquantences tell of others "being cured" of Fibromyalgia. I'm only passing this insulting article on so you can add your own comments. I already wrote mine as have many other sufferers.

http://www.psychologytoday.com/blog/owning-pink/201204/the-secret-healing-chronic-fatigue-syndrome

Autoimmune Syndrome and Pesticides in our Food Supply

noreply@blogger.com (Perdida) — Wed, 11 Jul 2012 06:08:00 +0000

Pesticides Being Sprayed on Food Crops (image source: nmorganics.net)

I recently read an article in "Natural Awakenings" the Central New Jersey version, June 2012 issue, that I wanted to share. I've written about this subject before but felt it was time for a re-visit.

The title of the article is "Is Your Body Allergic to Itself? - The Plight of Autoimmune Syndrome" and is written by Dr. Nikki Conte (unfortunately the article is available only in print or PDF format which is where the above link will take you).

Dr. Conte's article focuses on, what I agree is, the real cause (or one of the main causes) of autoimmune diseases such as ME/CFS (Chronic Fatigue Syndrome) and Fibromyalgia. I don't understand how the presence of staggering amounts of chemicals, including pesticides and synthetic bovine growth hormone, injested by the average American every day in their food can be all but disregarded by our government, medical establishment and the general public. Our food supply has become inexcusably poisoned and the presence of these chemicals is routine and completely legal.

image source: http://www.lowdensitylifestyle.com/obesity-can-be-caused-by-chemicals-in-foods/

Pesticides are created to kill insects, fungus or any other living thing that may endanger the particular crop they are applied to. Although I realize human beings are quite a bit larger, therefore less vulnerable to the fatal effects of these chemicals, this daily ingestion must have some cumulative effect. I think it's naive to think that chemicals who's sole purpose is to kill, will have no negative impact on human beings as a whole. I've often thought (and I know I'm not alone) that these chemicals must have some part in the increase of autism cases and many other diseases, such as obesity, that the medical and scientific communities seem baffled by. (For more information about obesity and pesticides click on the source link under the above image)

Our immune systems simply don't know how to react to the onslaught of these relatively new agents and in some people, have become so confused that they wage a full autoimmune attack on benign substances in our food or environment that have been in existence for many generations, or in the case of wheat, since human beings began an agrarian existence around ten thousand years ago.

As the mother of a two-and-a-half year old, this whole notion scares the heck out of me. I buy as many organic foods as I can reasonably afford and my daughter has yet to taste beef, chicken, pork or any other land animal, though she has had fish on occasion. I feel desperate to protect her from pesticides, synthetic bovine growth hormone and chemical preservatives but these substances are so prevalent in our food supply that I wonder if this is even remotely possible.

Cold Viruses & ME/CFS & Fibromyalgia

noreply@blogger.com (Perdida) — Mon, 02 Jul 2012 15:00:00 +0000

Before delving into the oh, so, uplifting subjects of illness, ME/CFS and Fibromyalgia, I just have to celebrate for a moment, this,...

MY 100TH POST IN "FIBROMYALGIA???"!!

I can hardly believe it! I started writing this blog on Jan 13, 2011 in the midst of feeling so sick and recently having been diagnosed with Fibromyalgia (the ME/CFS diagnosis came later). I'm so thankful for the progress that I've made since then and I hope that some of my experiences were helpful to others who face a similar plight. Of course, I realize that at any time, I could be right back where I started which is why I will never take my health for granted again.

In celebration of this momentus occasion, I'm having a sale in my Etsy shop, Catalina Inspired, for all of you who've read my blog and let's face it, really deserve something for going through the hell that is ME/CFS and Fibromyalgia (or what ever other challenges you face in life). Please use the coupon code - 100THPOST - to enjoy 20% off your entire order in my shop through 7/16/2012.

Here's a sampling of what you'll find at

Catalina Inspired on Etsy:

Ok, enough celebrating and back to the topic at hand.

My two and a half year old daughter brought a lovely cold virus back home from pre-school earlier this week. My entire family has been suffering with a horrible cough, sinus congestion and just feeling super crappy since then. Before I fell ill on Tuesday, I had a reaction that reminded me that although my ME/CFS & Fibromyalgia are somewhat under control at the moment, what ever it is that caused them in the first place is still thriving in my body.

I woke up Monday with a scratchy throat which didn't surprise me since I'd been constantly wiping my daughters runny nose the previous day. What did surprise me however, was what happened later in the afternoon. I started feeling those all too familiar jabbing pains throughout my entire body. In an hour or two I was in bed with a heating pad, moving it from my back, to my legs, to my hips, etc and had strong, throbbing, stabbing pain throughout my whole body and was not able to get out of bed. I couldn't sleep because the pain was too strong. It was like I'd been transported back two years and I was in the middle of Fibromyalgia hell again.

Fortunately, I was finally able to fall asleep that evening and when I woke up on Tuesday, I felt as though I was getting the cold my daughter had but the jabbing pain had diminished to a tolerable level.

It makes me so curious to know why, when attacked with this common cold virus, my immune system revolted into a full autoimmune attack. It makes me think back to those theories about viral causes to ME/CFS & Fibromyalgia and wonder if there isn't something more to it.

CFS/FM Study at Beth Isreal, New York, NY

noreply@blogger.com (Perdida) — Tue, 26 Jun 2012 21:00:00 +0000

I wanted to pass on this information to anyone in the New York metro area who is suffering from Chronic Fatigue or Fibromyalgia symptoms. The following story aired on CBS Newsradio 880am in New York on June 19th, 2012.

Interview with Dr. Benjamin Natelson, Director of the Pain and Fatigue Study Center at Beth Israel in Manhattan

Dr. Benjamin Natelson is also the author of "Your Symptoms are Real" published in 2008 and a professor of neurology at Einstein. This is the website he refers to for more information about the study he's conducting: www.painandfatigue.com

The study has been funded partly by the National Institutes of Health and sounds very promising. I haven't read Dr. Natelson's book but plan to do so right away.  In the radio interview, he admits that over the twenty years he has been researching CFS & Fibromyalgia, one of the most important breakthroughs he and his co-researchers have made is simply the general acknowledgement of the existence of these diseases.  Although it's still hard sometimes to get a doctor to take you seriously, you can usually find one eventually that will. I cannot imagine what it must have been like twenty years ago to have suffered so severely and had doctors tell you it was all in your head. I don't know how I would have endured it. I was at least lucky enough to have come down with ME/CFS & Fibromyalgia after people like Dr. Natelson had finally convinced their colleagues in the medical community that this was something to be taken seriously.

If I were still symptomatic, I would be on a plane to NYC ASAP!  I'm from Central New Jersey and my family still lives there (which is actually how I found out about this radio interview) so it would have been a no-brainer for me. However, I'm happy to remain here in (not too) sunny Southern California and be feeling as great as I have been for the last three months.  I'm still doing really well on 125mg amitriptyline and 2mg lorazepam per day. I've been walking about eight miles per week, up and down 9.5% grade hills and on good days, have been able to maintain a 2.8mph pace up the steepest slopes. I will never again, for one moment, take my health for granted. As I've said countless times before...I only hope it lasts.

(By the way, in case anyone is keeping track, this is my 99th post which means my next post will contain a coupon code for 20% off your entire order in my Etsy Shop, Catalina Inspired in celebration of my 100th post! - I can hardly believe it!)

Eating In Your Sleep?!

noreply@blogger.com (Perdida) — Fri, 22 Jun 2012 05:14:00 +0000

It's embarrassing to admit but I can only explain this bizarre behavior as a side-effect of my newest medication. As I've reported, now many times, I seem to have found a medication combination that finally has freed me, if only temporarily, from the grasp of this unknown illness. I'm still feeling better, three and a half months after starting amitriptyline. I'm also taking lorazepam for sleep because, while the amitriptyline takes away many of my symptoms including fatigue and pain, it doesn't seem to help my sleep problems much.

I've had some very unusual side effects from this medication, the strangest of which involves an insatiable urge to eat in the middle of the night. It seems to have gotten a little better as my body adapts but at first I didn't know what was going on. I'd wake up in the morning with a half a peanut butter sandwich stuck to my arm, tortilla chips or Goldfish cracker crumbs everywhere in my bed and only a very vague recollection of having gotten up in the middle of the night and it was happening every single night. I finally got smart and started leaving myself something simple and healthy to eat, like a banana, where I could easily grab it. Then I'd wake up and find the banana on my night stand or IN my bed with only one bite taken from it.

I could go on and on relating entertaining anecdotes of my "sleep eating" but the fact is, this reaction is rather disturbing. As a child and young adult I talked and walked in my sleep from time to time but eating in my sleep? No way! I only have a very vague memory of these actions and sometimes, none at all. I also fear the very real possibility that I'll choke on something I'm eating if I lay down with the food still in my mouth.

I've known people personally who took prescription sleep medications and did all sorts of crazy things in their sleep but I'm curious to know whether anyone else has had this happen while taking amitriptyline. Although this baffling behavior is disturbing, I'd gladly endure it every night rather than be as sick as I was such a short time ago.

Fibro Brain Fog, Thick as Ever

noreply@blogger.com (Perdida) — Wed, 30 May 2012 21:25:00 +0000

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.

Growth Hormone Treatment for Severe Fibromyalgia

noreply@blogger.com (Perdida) — Mon, 21 May 2012 18:08:00 +0000

I just got an email update from MDLinx about the following article. This is only a summary of the article. In order to read the whole thing you have to pay $32 I think. The source link is included at the end of the article summary if you're interested in purchasing it:

Pain, 04/04/2012

Cuatrecasas G et al. – In this largest and longest placebo–controlled trial performed in FM (NCT00933686), addition of growth hormone (GH) to the standard treatment is effective in reducing pain, showing sustained action over time.
Methods

A total of 120 patients were enrolled in a multicenter, placebo–controlled study for 18months.

They were randomly assigned to receive either 0.006mg/kg/day of GH subcutaneously (group A, n=60) or placebo (group B, n=60) for 6months (blind phase).

The placebo arm was switched to GH treatment from month 6 to month 12 (open phase), and a follow–up period after GH discontinuation was performed until month 18.

Standard treatment for fibromyalgia (selective serotonin re–uptake inhibitors, opioids, and amitriptyline) was maintained throughout the study.

Number and intensity of tender points, Fibromyalgia Impact Questionnaire (FIQ) with its subscales, and EuroQol 5 dimensions test (EQ5D) with visual analogue scale (VAS) were assessed at different time points.

Results

At the end of the study, 53% of group A patients obtained fewer than 11 positive tender points, vs 33% of group B patients (P<.05). 39.1% vs 22.4% reached more than 50% improvement in VAS (P<.05).

Group A patients showed significantly improved FIQ scores (P=.01) compared with group B.

Although GH discontinuation worsened all scores in both groups during follow–up, impairment in pain perception was less pronounced in the GH–treated group (P=.05).

Read more: http://www.mdlinx.com/pain-management/news-article.cfm/4003919/fibromyalgia#ixzz1vWoGSN3f

Uninsured With ME/CFS and/or Fibromyalgia - Part 3 - Prescription Medications

noreply@blogger.com (Perdida) — Mon, 21 May 2012 03:32:00 +0000

This post is the third in a series concerning financial strategies for those who've been diagnosed with a chronic illness, are uninsured and living on a low income. Click below to see the original post:

What to Do When You're Diagnosed With ME/CFS and/or FMS and Don't Have Health Insurance

So, you've seen the doctor, had some blood work done and depending on the results, may have gotten a prescription to address your pain, fatigue or other symptoms. Many prescriptions for ME/CFS and Fibromyalgia are new and really expensive. This also means that there aren't generic alternatives. One doctor I saw prescribed Cymbalta which has a three-hundred-fifty dollar per month price tag! Incidentally, this particular doctor (a Rheumatologist) had almost no experience dealing with low income and/or uninsured patients as well as countless other faults. I filled only half of the prescription and charged it on my credit card.

The clinic my GP (who I really like) practices at, has a person on staff who helps uninsured, low-income patients obtain prescription medications at discounted rates or for free, depending on the situation. When I first started seeing this patient advocate few years ago, it all seemed like magic. My doctor wrote the prescription and had it forwarded to the advocate. I made an appointment to see her, she explained which financial papers I needed to provide, she'd fill out some forms and I'd sign them. In about two weeks, I'd go back, she'd hand me a bag of name-brand prescription bottles, I'd thank her and walk out the door without paying a dime. Later I started catching on to what she was doing. The best part is, anyone can do it!

The advocate was simply contacting the pharmaceutical companies and applying for financial assistance on my behalf. I thought, I'm pretty smart, I can do this myself. It ended up being easier than I ever imagined.

When I first learned about the high cost of Cymbalta, I started to panic, thinking I'd never be able to afford it. Then I looked back in my records at the forms my advocate had filled out. I tried to mimic what she had done.

The pharmaceutical company that manufactures Cymbalta is Lilly, the same company that makes Prozac. I went to the Lilly website, searched around a bit and finally found a financial assistance form to download. I can't remember exactly which financial documents they required, but I believe I sent a copy of my previous years tax return and a month's worth of my husband's pay stubs. I put the application and accompanying documentation in the mail and prepared myself for the usual routine, complete with countless follow-up calls and re-submissions of my application. To my overwhelming shock, the situation I'd come to expect, never materialized.

About two weeks after I submitted my application, I took out the copies of what I'd sent, took a deep breath and dialed the customer service number, poised for battle. A friendly man answered the phone and asked what he could do for me. I explained that I was calling to check on the status of a financial aid form I had submitted. After obtaining my name, he quickly pulled up my file. I had expected the usual "I'm sorry, our computers are really slow today" line, but no excuse was needed. He cheerfully reported that my application had been approved and the medication was already on its way to my doctor's office. I thanked him profusely, and hung up the phone in utter disbelief. His claims were not fiction as I picked up the four bottles of Cymbalta during my next doctor's visit. My doctor, apparently not used to dealing with uninsured patients, did not handle the whole situation well at all and I never saw her again after that. But that's beside the point.

What I'm about to write is also beside the point but has to be said. I found it interesting, to put it mildly, that the pharmaceutical company was so willing to mail me drugs with a value of approximately $350. It says volumes about how over-priced these drugs must be in the first place and how huge the profits are. You wouldn't, for example, walk into a grocery store, show them a copy of your tax return and get $350 worth of groceries. But, I suppose I shouldn't look a gift horse in the mouth (if you'll excuse the cliche) so I won't continue with this particular tirade

The point is, that it is possible to get prescription drugs at a discount. Most drug companies will give just about anyone (with a prescription from your doctor of course) a free one month trial. You can usually print the coupon out on your computer and give it to your pharmacist with your prescription.

In the next post, I'll tell you about third party drug distributors that offer huge discounts. Yes, it's legal and based in the USA.

Unisured With ME/CFS and/or Fibrmyalgia - Part 2 - Bloodwork

noreply@blogger.com (Perdida) — Sat, 12 May 2012 16:00:00 +0000

This post is the second in a series concerning financial strategies for those who've been diagnosed with a chronic illness, are uninsured and living on a low income. Click below to see the original post:

What to Do When You're Diagnosed With ME/CFS and/or FMS and Don't Have Health Insurance

So, now you've seen the doctor and if you've found one who takes you seriously, he or she will probably have ordered a lot of expensive blood work in order to check for autoimmune diseases such as Lupus, Multiple Sclerosis, Sjogrens Syndrome and Rheumatoid Arthritis. I'm still paying for blood work I had done over a year ago. If you don't have insurance, you could find yourself receiving a bill from the lab for $2,000 or more. I got some much needed advice regarding these invoices from a very unlikely source.

After receiving the invoice for this very expensive blood work, I called Quest Diagnostics to set up a payment plan since there was no way I'd be paying the entire amount up front. The customer service rep. I spoke with was truly a caring person and spent a lot of time with me. If you've had any experience with similar situations, you know how incredibly rare this is. She set up a payment plan for me then asked what my household income was. I thought this was an unusual question but I answered it anyway. She proceeded to tell me about Quest's financial aid program. She said she would mail me the application form and I thanked her profusely for her help. Sure enough, I received the application form in the mail a few days later, filled it out, attached the requested financial documents and mailed it out.

The next invoice I received from Quest Diagnostics had a credit applied that equaled about half of the original amount due. I was shocked and wished I'd remembered the name of the woman who was so helpful the first time I called. This whole experience taught me an invaluable lesson that I would like to pass on to everyone else who's in a similar situation.

The lesson is, to always ask if there's financial aid available no matter how unlikely it may seem at the time. The worst they can say is "no".

The next post will cover prescription medications and ways to get them at a discounted rate or for free!

(Btw - this is post #95 - five more to go till 100 and 20% off everything at Catalina Inspired on Etsy. Look for the coupon code in post # 100)

What to Do When You're Diagnosed With ME/CFS and/or FMS and Don't Have Health Insurance

noreply@blogger.com (Perdida) — Sun, 06 May 2012 22:26:00 +0000

This post is the first in a series concerning financial strategies for those who've been diagnosed with a chronic illness, are uninsured and living on a low income.

I was talking to a friend yesterday about the hardships of being chronically ill, uninsured and living on a very low income. I was giving her some advice about getting her medications at a reduced rate and thought it would make a great subject for a blog series. I've learned so much in the last two years, being uninsured, suffering with ME/CFS and Fibromyalgia and having to take a long, unpaid leave from my job.

I haven't had health insurance for a long time - about ten years I think, which was the last time I had an employer who offered it. When I was laid-off from my job, doing books for a software development company in NYC, I wasn't able to afford Cobra since I only received one month of severance pay and health insurance. After that that I had lower paying temp jobs that didn't offer health insurance at all. I didn't earn enough to pay $200 per month for insurance and believe me, I looked everywhere for something I could afford. I simply didn't make enough to pay rent ($900), utilities ($100), car payment ($300), food, gas, etc and health insurance on top of all that. You may be wondering why I'm going into all this personal detail about my finances.  I know there are many people out there under the delusion that health insurance is available to anyone who works. I hope my story will open some eyes to the hardships many US citizens endure simply because they become ill.

When I lost my job in NYC, I was twenty-five years old and healthy. The occasional visit to the doctor and some anti-biotics to treat a sinus infection, for example, was expensive but doable. I recently turned thirty-nine and I spent about six thousand dollars in 2011 on Dr. visits, blood work and prescription medications and a large sum the year before as well. This is far from doable for me.

There are exactly four people (including myself) who work at the very small hotel I manage. The owners do not offer health insurance because it would take a huge bite out of their profits, making the business not worth having. Large companies can get group discounts on health insurance for their employees, but this is simply not realistic for small businesses. Two other small business owners I've worked for apologetically reported the same findings.

As my mysterious illness progressed during the last two years, I was forced to take a medical leave from my job which made paying for my mounting medical expenses increasingly difficult. I'd set up payment plans for most of my bills, but it was becoming difficult to even pay those amounts each month. I did learn some really valuable lessons along the way though, about reducing many of my medical expenses.

If your income is low enough, you can usually qualify for many different programs. Unfortunately, if you're a person who has a mid-to-low-range income (a single person who makes less than around $25,000 per year, more if your married and have children), you can get caught in "no man's land" where you don't qualify for assistance but your income isn't high enough to pay cash for your medical expenses or for private health insurance each month. I would guess that a very large percentage of people in the USA fall into this category.  But I won't get on my political soap box because that isn't what this post is all about.

Your battle plan should start even before you walk through the door of your doctor's office. When you make an appointment, ask the person on the phone if their practice offers a sliding scale or other financial aid for uninsured, low income patients. Even if you're not sure whether or not you fall into the "low-income" category, fill out the forms anyway. You may qualify for something. I've found that doctor's office staff seldom offer this information so you have to ask! My doctor, for example, offers a twenty-percent discount if you pay your bill on the day of your visit. This brings the total, for me, to less than $100 per visit. Even if I don't have the full amount that day, I put it on a credit card and pay when my bill is due. Try to avoid paying in cash as it's harder to prove how much you've paid towards medical bills.  You may need hard proof of these expenses in the form of bank or credit card statements in the future.

I should warn that some practices do not treat people without health insurance. This came as a huge shock to me the first time I encountered it. I was desperate to see a doctor I'd read really good things about and offered to pay the full amount in cash before even seeing the doctor, but I was turned down.  I'm still a bit confused as to the motivation for this policy.

My doctors office also offers "Charity Care", a program based on income level that provides discounted or free services. I'll emphasise that you have to talk to an administrative person about this, not the doctor. Doctors, I've found, are frequently unaware that these programs even exist.

In my next post, I'll write about how to get discounted or free prescription medications and more.

Also - This is my 93rd post - 7 more till my 100th, where I'll post the coupon code for 20% off your entire order at Catalina Inspired on Etsy.

Someone Pinch Me!

noreply@blogger.com (Perdida) — Sat, 05 May 2012 04:47:00 +0000

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.

I Can Walk Three Miles Per Hour!

noreply@blogger.com (Perdida) — Sun, 29 Apr 2012 04:42:00 +0000

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.

Amitriptyline/ Ativan Reaction

noreply@blogger.com (Perdida) — Fri, 27 Apr 2012 21:40:00 +0000

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

noreply@blogger.com (Perdida) — Fri, 20 Apr 2012 05:14:00 +0000

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!

noreply@blogger.com (Perdida) — Tue, 17 Apr 2012 05:37:00 +0000

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!

Life as a Paper Doll

noreply@blogger.com (Perdida) — Fri, 13 Apr 2012 06:03:00 +0000

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.

Amitriptyline is Kicking My Butt!

noreply@blogger.com (Perdida) — Wed, 04 Apr 2012 22:23:00 +0000

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?

noreply@blogger.com (Perdida) — Sun, 01 Apr 2012 06:47:00 +0000

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

noreply@blogger.com (Perdida) — Tue, 27 Mar 2012 04:53:00 +0000

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.

Vegan Diet for CFS & FMS - Day 16

noreply@blogger.com (Perdida) — Fri, 16 Mar 2012 18:22:00 +0000

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