Fibroletters, Fibromyalgia Letter Writing Campaign

I have recently discovered a great cause that helps to demonstrate how Fibromyalgia (FMS) affects people.  The name of the idea is Fibroletters, Fibromyalgia Letter Writing Campaign.  It was started by several patients with Fibromyalgia (among other conditions) to help the public understand of the reality of Fibromyalgia.  

Per the Facebook page, here is a description of the purpose of this campaign.

This is not an FMS awareness campaign, but more of an FMS humane campaign.

The purpose of the group is to get at least 500 letters from those that suffer FMS, their families, friends, neighbors, co workers and anyone that can say how it not only affects the sufferer, but those around them.

Once we reach 500 letters they will all be mailed to the media AT ONE TIME. We are hoping that if its sent this way, it will be the same as if we were there. Each letter representing a person. Each person telling a story. Each story affecting another.

Please join us in sending a letter snail mail or email.  (More info is on the web page.)

Whether you are a patient, friend, relative, coworker, or just know someone with Fibromyalgia, you will very likely have a perspective on how this health condition has affected you.  Most readers of this blog (if not all) know someone who has Fibromyalgia.  Many of you know me, and if you know me, you know someone with Fibromyalgia. 

I have already written and submitted my letter via email.  Will you please take a few moments to write a few words about how Fibromyalgia has affected your life and send it in as well?  There is no cost, other than time, and your words will have an impact on this campaign.  Your letter can help make a difference.  

Please write a letter and send it in.  Share this campaign with others you know.  Join the Facebook page.  Visit the website.  Share the link with your friends and invite them to join.  Post the call for letters in your blog or networks.  Email about it.  Talk about it.  Tweet about it.  Get the word out any way you can so they can reach their goal of 500 letters.

Our healing begins with understanding and the best way to help others understand is to write a personal letter.

Thank you!

Chronic Illness: A New Perspective

A very common theme in the many blogs and comments from folks with Fibromyalgia and other, incurable, chronic pain conditions is that the illness takes their previous, normal life away.  

I've recognized this same observation in myself.  There was the old me from before all my Fibromyalgia and Myofascial Pain, and now the new me feels like much less the person I used to be.  I have mourned my previous life and tried to come to terms with having lost many abilities that I once took for granted.  As the t-shirt I'm wearing today states, I am "always tired, always in pain, always uncomfortable".

In addition to the personal changes that illness brings, patients of Fibromyalgia also have a very difficult time assimilating into a society that can't see this invisible illness.  They have expectations of us that we want to fulfill, but physically cannot.  When the expectations and misunderstandings come from family or close friends, they are especially difficult. 

In an effort to keep myself from becoming hopelessly depressed about my current state of health, I am going to try an experimental perspective change.

What if I were to think of myself, now, as someone with normal capabilities, and recognize those in the world who can do more than me as extraordinary individuals with much more strength, stamina, and speed than I do?  

I can call myself and all my fibromite friends the "normal" ones - ones who feel pain all the time, ones who have to rest frequently, ones who don't sleep well, ones who need to write reminders for everything down - we are the ones who are the regular, typical people of the world.  

All those other folks - the ones who can participate in sports, the ones who have energy, ones who feel refreshed after a great night's sleep, ones who breeze through tasks like vacuuming or even shopping - these are all super-athletes of the world.  Young or old, there are quite a few of these people who have extraordinary potential and can run circles around us "normal" folks.

If you suffer from a chronic illness, especially an invisible one like Fibromyalgia, try this idea on for size and let me know what you think of it.  You don't have to share it with those super people, but see if the perspective will help.  After all, it seems like more of the world is ill than not these days, doesn't it?  Perhaps ill people are the new normal.

Nausea Treatments

Recently, I'd had several days of moderate to severe nausea, costing me two days off my job, and plenty of discomfort and distraction besides.  

When it first hit me on Monday morning, I thought perhaps it was something I ate, but soon I realized that my husband ate exactly what I did, and he was doing fine.  

Then I reflected on any recent medication changes.  There was a change to my asthma medications a few weeks ago, but why would symptoms come on so suddenly and severely, several weeks after making the switch?  After several days of misery and trying to work, I called my allergist to see if I could get prescriptions for my old medications and switch back.  Due to phone tag and fibro fog, I had't actually gotten the chance to speak directly with the doctor and discuss anything with him, so the change never occurred.  After the weekend had passed, the nurse called back and asked about my status.  I was feeling a little more sensible by then, and retracted my request to switch back to the old meds.  I know my body doesn't like medication changes, even slight ones, so I thought I'd train my body to accept the new meds, rather than stir up trouble and possibly risk new symptoms to go through again.

For the moment, it seems that, whatever the cause, the nausea is now mostly under control, with some more typically minor waxing and waning here and there.

Last Friday, however, I saw my Fibromyalgia doctor (a neurologist) and asked him specifically about the nausea.  He told me that nausea is not a typical symptom included with Fibromyalgia, and wondered along with me about what could have caused it.  

Later on during the appointment, when I asked about B12 shots or nasal sprays and whether it was worth considering, I mentioned that I take a Super B-Complex supplement every morning after breakfast, along with several other supplements.  He said that B vitamins, specifically, can make him nauseous, so he takes his just before eating, which helps him.  I'm not sure why this is the case, but I can certainly try taking my supplements just before breakfast, rather than just after, to see if it helps.  So far, so good, I guess.  (By the way, he said I should be getting plenty of B from my supplements and food and shouldn't need injections or special sprays or anything.)

He also gave me some other helpful information about how to treat nausea.  

Although medical marijuana is not legal here in Illinois, he does know that studies have shown it to be effective for reducing the kind of severe nausea and vomiting that chemotherapy causes for cancer patients.  He also knew of several patients of his who have told him that the use it (illegally) and that it helps them, though it affects their sensibilities.  

Something I could do whenever I feel bothersome nausea coming on is use an acupressure technique that tends to help.  Basically, dig a couple of fingers into the middle of the underside of your wrist and firmly massage the area.  Either wrist works, or you can switch between both.  I am going to have to give that a try the next time I need it.

Lastly, he mentioned ginger as an effective nausea relief treatment.  You can take it in the form of ginger beer (yummy!), ginger capsules, or candied ginger.  He mentioned an Asian company called Dynasty that makes candied ginger and sells it in a yellow box.  I went to a newly opened Whole Foods after work last Friday, and spotted some candied ginger available in bulk, so I bagged a bit of it and bought it.  It's just plain ginger, in cubes, covered in cane sugar.  I tried one on the drive home - boy was it strong!  I couldn't imagine eating these as a snack, but as a treatment, I could see how the flavor could be distracting, at least.  I have yet to test their effectiveness on my nausea.

Armed with all this knowledge, I feel ready for the next bout of nausea.  Bring it on, FibroBeast!  You may have won the first few battles, but I'll beat you next time.

I understand that Fibro is similar to ME/CFS in some ways... How do you cope with the pain, exhaustion, & broken sleep? (ie. 3 hours sleep, waking every 10-50mins) What things make you happy & take your mind off your illness?

I wrote up my own Wellness Recovery Action Plan (WRAP), based on my observations of my symptoms, triggers, and treatments. I shared mine with the public here:
http://www.scribd.com/doc/18785920/Zouras-WRAP

It is difficult on the worst days, of course, but when I am up to enjoying friends or alone time, I can forget for a little bit. They key is to remember that there will be better days ahead.

What's on your mind? Fun or serious questions welcome.

Limitations: The Hard Reality of Fibromyalgia

Today would be the day that I would officially start my Wagon 1.3: Endurance Training.  However, I've had some setbacks and I don't feel that I've really made much headway on my previous goal of strength training.  It seems that when I do even the wimpiest of the strength training exercises, I activate some latent trigger point and flare up in pain.  In response, I need to lay off the exercises for a few days.  On top of the pain, last week, I dealt with some unexpected and unexplained severe nausea that cost me two vacation days of work.

I am not going to give up, mind you, just because circumstances have not been ideal.  I'd be a fool to expect that I could just suddenly overcome all my limitations because I decided to.  I do tend to forget my limitations, because I know there are things I used to be able to do (like daily exercising, household chores, etc.) before Fibromyalgia came and beat me up.  Now I'm unable to do things I used to do, and it takes significant effort to consciously remember that I can no longer do those things - at least not to the same extent that I used to, back when I was "normal".

Such is life with the FibroBeast.  I'm on a very short leash and pulling at it is futile.  I wish I could easily see the extent of my leash, but it's something that apparently seems to vary randomly.  I haven't figured out all the factors that determine how far I can go before I hit the limitations each time.  It almost seems the leash gets shorter each time I try, like Fibro is getting angry at me for my persistence.  

Should I appease the beast and stop trying?  Nahhh.

The Unpredictable Nature of the FibroBeast

Unpredictable get the best of you?

Oh my, yes.  I came across this blog post from a fellow chronic illness sufferer dealing with the unpredictable nature of her symptoms.  I sure can relate!  In addition to not really being able to plan a fun trip or event, I am now faced with the challenge of not being able to plan to be able to work on a regular basis.

I was out sick Monday and Tuesday of this week, due mostly to extreme and sudden nausea and abdominal pain and discomfort.  I am completely out of sick time for the year already, so I had to use vacation time for these days.  I was miserable and couldn't even work from home.  The previous Friday, I did work from home, unexpectedly, thanks to dizziness that prevented me from safely driving to work.

When I returned to work on Wednesday (still nauseous and in a plenty of discomfort), I knew I'd have to address with my boss the crazy, unpredictable nature of my illness and how it's been affecting my work.  I regret to report that I couldn't help myself from crying almost as soon as I started the discussion.  How embarrassing!  Here I was, talking about my job with my boss, blubbering like a child about my fears of losing my income and benefits.  I was powerless against those damned tears!  I tried to hold them back, but they overcame my efforts.

Although I worried the worst (that he was considering firing me for my absenteeism), he reassured me that he values my work (when I am able to do it) and that he has absolutely no intention of getting rid of me.  He was very understanding and handled the awkwardness that I inadvertently created.  The plan was to brainstorm a few job modification ideas that could accommodate me better.  These were things I never imagined would be available to me, so just knowing that he would consider so many options was greatly relieving.  We would regroup in a week or so to decide on the options we could agree on and move forward.   

The lesson I learned here is that I shouldn't assume the worst, but rather open a discussion and pursue the truth.  Worrying about stuff that won't happen is a waste of my emotions.  I am lucky to have an understanding boss and to work for a company that realizes the value of my remaining employed despite having to make special accommodations for people like me.  Thank you, kind employer!!

Have you had to make any special accommodations to be able to continue working with a chronic illness?  If so, please comment and share the strategies you have tried.  Tell us what worked and what didn't work.  I came into that conversation not realizing there were any options available at all, so it may help others to share ideas from real experiences.

Wee! Wagon Train!

I know I said I can't be on all wagons at the same time, but after taking a month just to get back into stretching, and after taking almost another month to add in strength training exercises, I've suddenly found myself peeking at the other wagons and getting ahead of myself.  (I got antsy about the large list of goals I've made for myself and time ticking away.)

Here's what I'm currently doing and what I've learned from prioritizing my wagons and refocusing on each goal.

1. Exercise 
1. Stretching (started on 3/18/10)
   I've been doing mild stretching each morning, focusing key stretches on my newly discovered serratus anterior, to prevent that nasty spot at the bottom of my shoulder blade from coming back. 
   
   
   
2. Strength Training (started on 4/18/10)
   I've added a few very mild strength-building exercises to help regain some muscle mass. I used to do a few wall push-ups as part of the routine, but I'm noticing that these seem to be aggravating that serratus anterior trigger point under my arms, so I'm trying to mix it up and not too too many of these at a time. 
   
   I'm also making sure I try different exercises, specifically, exercises that target differing muscles and muscle groups, each day, so I don't overwork any muscles. 
   
   Fibro or not, I've learned that letting muscle tissue rest for a day is the best way to get results.  When you exercise muscles, the tissue tears a bit.  (They are miniscule tears, but together, they add up).  After a day of rest, the torn muscle tissues can heal and build back up, hopefully with more mass, translating to more strength for the next round of exercises.
   
   
   
3. Endurance Training (unofficially started on 5/4/10)
   May 4th was a pre-scheduled work-from-home day for me.  It was a lovely, sunny and warm day, so I tried on some of my shorts to break in the season.  Tragically, I could not find a pair that fit me!  Unbelievable!  So I weighed myself and was utterly disgusted.  I was 148 lbs.!  I've never been this heavy in my entire life!  It's dangerously close to 150, which I never want to be able to claim as my weight. 
   
   This shocking news is what prompted me to act on this and the next wagon sooner than originally planned.  So, when the work day was over, I put on my gym shoes and went outside to walk.  I could no longer wait to trim down.  It was beginning to cause additional problems with self-esteem and conundrums about my current wardrobe.  I pushed myself (risky for a fibromite like me) to walk farther than usual and ended up being out for 45 minutes.  It was exhausting, but I felt much better about myself for having done something positive.
   
   I hope to do much shorter walks on the nicer days, to try to get my heart muscle working and see if I can extend my activity tolerance a bit.  My last walk on 5/6/10 may have been too much, as I was exhausted and cold when I got back (it was chilly) and felt kind of exhausted for a few days afterward.  I need to make sure I'm not fooled by that happy sun when the temperatures aren't quite as high.
   
   
   
2. Weight Loss
   The day of that weigh-in and shorts debacle, I revamped my CalorieCount plans and decided to start logging my calories again.  I modified my diet start date to be 5/5/10 and put in my start weight at 148.  I also changed my end goal to be more reasonable and see how things go.  I simply couldn't stand to postpone this wagon any longer!
   
   
   
3. Reduce Medications (started May, 2010)
   I am trying to get more control of my pains and symptoms, so I won't have to take so many medications.  With the warmer weather coming, I'm also hoping that my pain will be reduced as well. 
   
   So far, I've been able to reduce my Ritalin dosing from two a day to one or none each day.  I've been experimenting with skipping my second dose, to see if there is any difference in my focus or mental capacities.  So far, I'm not noticing much difference.  Since this drug tends to make my heartbeat irregular a lot, I'm happy to reduce and, eventually, get off of it entirely.
   
   
   
4. Stop Finger Picking (started April, 2010)
   Don has been my inspiration on this.  Armed with Band-Aids, I've been trying to resist picking at my fingers, especially my thumbs.  I used to feel like it was too wasteful to cover my fingers in Band-Aids every day, but it definitely helps me to not be able to feel those rough spots, so it's worth it.  Sorry, environment, I have to make an exception for my own greater good. 
   
   Eventually, I hope to wean myself off the Band-Aids, but I'm not quite there yet.  When they get too wet from hand-washing toward the end of the day, I take them off and leave my fingers bare for the remainder of the day, but I notice that those are the times I still pick, so they do make a difference.

I'm feeling much better about all these goals now than when I first realized I was trying to juggle them all without having them concretely written down and prioritized, so being on more than one at a time is not as overwhelming any more.  If I do get overwhelmed again, however, I'll refer to this list order and make sure I choose the top ones over the bottom ones, if I have to sacrifice anything to survive.

I sure am happy to use this public forum to keep me motivated, too.  If you have anything you'd like to add or any comments about any of this stuff, I'd be happy to read them.  Please keep me going on these.  I need to know you're out there, to keep me honest. :)

Serratus Anterior Trigger Point May Be the Reason My Back Hurts

After researching and digging to try to find a reason for my stabbing, mid-back pain on my left side for the past month, I think I may finally have an explanation that makes some sense.  In addition to Fibromyalgia, I also have Chronic Myofascial Pain, which is associated with those trigger points.  Trigger points are muscles that, when knotted up, tend to refer pain to other areas in the body.  Sometimes referral pains are not very logical, so it's easy to forget that trigger points might be the culprit of some problems.

The muscle that I suspect is causing pain for me the past month or so is called the Serratus Anterior, which is located under the arms.  

When I learned of this muscle, I tried massaging the faulty muscle on my left side.  I was surprised to find that breathing and movements hurt less while I was applying gentle pressure on the spot.  However, it's a difficult position to massage oneself, as the other arm gets fatigued quickly.  I told my husband about it and he rubbed it for me a bit, which felt good.  I'm now focusing my heat wrap and intermittent rubbing (as I can) on that spot, to help the pain under my left shoulder blade fade away.  

I hope to do more focused stretching on the spot as well, to help prevent this problem from occurring again.

I think I may want to get The Trigger Point Therapy Workbook as a future reference, since it came in so handy for me on this issue.  (The drawing above is from the book's website.)  I'll keep you all posted on my progress with this pain.

Do any of you have this book?  Has it helped you?  How do you handle trigger point pain referral problems?