Small Successes and Epic Failures

It's been a while since I have written, but it's been a while since I have done anything. So it all evens out.

My pain levels have been an absolute rollercoaster. One minute I'm ok, the next I'm squirming and moaning in pain. It should be noted that I have stopped taking narcotic pain killers. I'll have a low-dose Vicodin when the pain gets to be too much, but that seems to only be happening once every two or three days and it's very rare that I would have to take more than one in a day.

I guess it's a good thing to reduce the narcotic intake from 4 times a day to a minute dose every two or three days. At least now I know which pain was actually opioid-induced hyperalgesia.

Another change in my medication in an increase in Zanaflex and Neurontin. I now take Zanaflex 4x a day like clockwork and my doctor has increased my Neurontin to 800mg 4x a day, for a total of 3200 mg a day, again, like clockwork. I still have to have alarms set on my phone to remind me when to take a dose.

This medication seems to be working well, as my good moments are getting longer. But, then, I try to do something stupid like the dishes or the laundry (or both) and I end up in bed squirming and moaning again - and not in a good way. I seem to have perfected the push-crash cycle. I push-push-push-push, then crash hard. Pacing is always something I have needed to work on.

Another update in my life is that I'm considering going back to school. I don't know that I'll be doing the online modality again, as I just don't have the discipline to keep up with the coursework when left to my own devices. But, will I have the discipline and the spoons to physically attend class a couple days out of the week? I'd like to try, honestly. Because no matter what else I have accomplished, no matter what else I went through in life and survived, not finishing my Master's degree makes me feel like a complete failure. And failure has always been my greatest fear.

Which brings me to another failure - everything else. It looks like I may lose my house that I've lived in for 9 years, and there is a good possibility that I may lose my car. I'm struggling to keep the utilities on and paying for my medication out of pocket because I don't have health insurance. I'm not sure what to do at this point except ask my BFF if she would consider rooming with me (and son, until he leaves for college). She wanted to start looking for a new place for herself to live this month. If we pool our resources, maybe we can get a moderately nice house together. Otherwise, I'm going to be forced to move in with my step-mother. After all, I own 1/6 of the house she's living in (and I'm sure my brothers won't mind me taking up their portions). But I really don't like my step-mother, so that's the last resort. I wonder if I can sell the house before it forecloses? That would be bonus. Anybody who knows anything about any of this kind of stuff, please give me some pointers.

So those are my small successes and epic failures that I've been dealing with since my last post. Maybe now that I've gotten it all off my chest, I can finally sleep again.

Gentle hugs and keep on rolling,

Jessica

H1N1 Prevention Suggestions

I received this from a friend. With our compromised immune systems it never hurts to try these simple things.

Jessica

H1N1:

The only portals of entry are the nostrils and mouth/throat. In a global epidemic of this nature, it’s almost impossible not coming into contact with H1N1 in spite of all precautions. Contact with H1N1 is not so much of a problem as proliferation is.

While you are still healthy and not showing any symptoms of H1N1 infection, in order to prevent proliferation, aggravation of symptoms and development of secondary infections, some very simple steps, not fully highlighted in most official communications, can be practiced (instead of focusing on how to stock N95 or Tamiflu):

1. *Frequent hand-washing (well highlighted in all official communications).

2. “Hands-off-the-face” approach. *Resist all temptations to touch any part of face (unless you want to eat, bathe.)

3. *Gargle twice a day with warm salt water (use Listerine if you don’t trust salt). *H1N1 takes 2-3 days after initial infection in the throat/nasal cavity to proliferate and show characteristic symptoms. Simple gargling prevents proliferation. In a way, gargling with salt water has the same effect on a healthy individual that Tamiflu has on an infected one. Don’t under estimate this simple, inexpensive and powerful preventative method.

Similar to 3 above, *clean your nostrils at least once every day with warm salt water. *Not everybody may be good at using a Neti pot, but *blowing the nose hard once a day and swabbing both nostrils with cotton swabs dipped in warm salt water is very effective in bringing down viral population.*

5. *Boost your natural immunity with foods that are rich in Vitamin C. *If you have to supplement with Vitamin C tablets, make sure that it also has Zinc to boost absorption. *Vitamin A and D3 can also help prevent flu due to their anti-viral properties. (email me back if you want me to give you the Vitamin A and D3 protocol)

6. *Drink as much of warm liquids (tea, coffee, etc) as you can. *Drinking warm liquids has the same effect as gargling, but in the reverse direction. They wash off proliferating viruses from the throat into the stomach where they cannot survive, proliferate or do any harm.

I suggest you pass this on to all your friends and family; you never know who might pay attention to it - and STAY ALIVE because of it.

Managing Emotions

When I was working, managing emotions was close to impossible. I spent almost every day at my desk, in a cubicle no less, crying from pain, from depression, from anxiety, and, sometimes, crying just for the sake of crying. I cried all the way to work, then I cried all the way home. I cried myself to sleep. I did not know HOW to manage all of the emotions that would hit me all at once. I would have anxiety attacks at work that were not only scary, but horribly painful. While once I thrived through a very stressful life, I could no longer handle the slightest provocation.

When I stopped working and spent more time at home resting, I still had a hard time managing my emotions. I would blow up at people in public if they did the slightest thing wrong to cause me discomfort, I blew up at my son without a good reason for such an outburst; I was, literally, a ticking time bomb just waiting to go off.

It goes without saying that my emotions affected my mental well-being, and over time I realized how my emotions were affecting my physical well-being. I have taught myself to calm down drastically through meditation, inner reflection, and spending time alone.

However, there was a very recent emotional outburst. I was in Wal-Mart with my son to get a few things. We learned they didn't have any electric carts available and I was in way too much pain to walk through the store, so I decided to wait in the car. We hadn't brought in my walker, to I used an empty cart for stability to get to my car. Somebody behind me started yelling, "Move it! Come on!" I turned and said, "Excuse me? I'm disabled." And he CONTINUED to yell at me for holding him up! Needless to say, I lost it. I started screaming obscenities at him, and followed him out the door, continuing to yell at him. He slunk down and started walking faster. I held my head up high until I got into my car, then I broke down into the ugly-faced, hyperventilating cry. I was angry and hurt by his insensitivity and ignorance. But I only allowed myself to cry for 10 minutes. Then I compartmentalized just like I do with everything else.

1. What do you do to help yourself feel better when you’re feeling blue?
   
   When I am depressed, I call my mom. Without fail. She always has a way of putting things into perspective for me, then we end up talking about other things that make me joke and laugh. It's almost impossible for me to be depressed around my mom!
   
   Another thing I do is turn to my Twitter support group. I have never found a group of women more supportive than theses ladies! Whenever anybody is having a bad day due to pain, depression, anxiety, whatever, these women "flock" around them like mother hens. Even though I only know these ladies from online, I consider them my dearest friends because they have helped me so much. The best part is that we all understand what each other is going through.
   
   
2. What strategies help you work through the losses brought by your illness?
   
   Loss is still something I try to cope with on a daily basis. I lost my job, lost my Master's degree, lost my social life, and my quality of life is questionable. Every day I run through things that, maybe, I would be able to do despite these afflictions. But I have yet to come up with anything. Lately I have rediscovered my creative side when I started playing with a scrapbooking program on my computer. I've started playing with graphics and making things for my blog and online support group. But it's helped me to know that I haven't lost every part of myself through illness. I am still loved, I can still love, I can still think (sometimes) and read and write, I can still be creative, I am still needed, and I can still help people. I'm still me, but in a different light and on a different path.

Love and hugs,

Jessica

P.S. The support group can be found at http://groups.google.com/group/FibroVoices

The Dave Ryans of Wal-Mart

I went to WalMart with my son today to pick up a couple of things and to get my hair cut. After getting my hair cut, I wanted to join my son in grocery shopping, but they didn't have any electric carts available, and I was in a LOT of pain, so I decided to go back to the car and just wait for my son to finish shopping.

I grabbed an empty cart to use for stability because I didn't have my walker with me, and started walking slowly through the store and out the door to get to my car. I tried to give people room to pass me because I had to walk really slow due to the back and leg pain.

When going out the first of the automatic doors, I heard someone behind me start yelling, "Move it! Come on!" Once through the first set of doors, I inched over to the side to let people pass and the guy who yelled started bitching at me again. I calmly said, "Excuse me? I'm disabled." Again, he was bitching at me and telling me I was holding up the line out of the store.

I lost it! I started screaming at him and continued to scream at him all the way out into the parking lot. I would tell you what I told him, but it's not the things to be said in polite company. I finally made it to my car, unlocked the doors, sat down, and started crying. One of those ugly-faced, hyperventalating cries, too.

It's very hurtful when people don't understand or even CARE to understand how hard it is for us. The entire incident reminded me of Dave Ryan and the statement he made about how he thinks people who claim to have Fibromyalgia should be shot (he apparently does not believe it is a true disease). There are TOO MANY people out there who would rather us be shot than to wait a few seconds for us to get out of their way.

For those who do not know, I have created a Facebook cause entitled, "Fibromyalgia Sufferers Against Dave Ryan." If you are on Facebook and have not already done so, please join our Cause. We have chosen the National Fibromyalgia Association as our beneficiary, so all donations will go directly to them.

Was my incident at Wal-Mart a mere coincidence in light of the incident with Dave Ryan? Maybe. However, it made me even more determined that Mr. Ryan be held accountable for his statement. It made me more determined to do whatever I had to do to make his statement known to the media. It made me more determined to ensure that every disabled person has a voice and that voice is HEARD! There is strength in numbers! And as we come together in unity with a single purpose, WE SHALL PREVAIL!

And all you normal, healthy people are just going to have to wait, regardless of how slow we are!

Fibromyalgia may be invisible, but we are not!

Love and hugs,

Jessica

From FMS Self-Help Course: Managing Emotions

Feelings such as worry, frustration, sadness and loss are common and understandable responses to long-term illnesses such as Fibromyalgia and CFS. They are a result of the changes, limitations and uncertainty brought by illness. Managing feelings deserves a place in your self-management plan, just because they are so common.

There are two additional reasons as well. First, CFS and Fibromyalgia often make emotional reactions stronger than they were before and harder to control. People often say they cry more frequently, get upset more easily or have more angry outbursts than before they were ill. The intensification of feelings applies to positive emotions as well as negative, experiences like seeing a sunset or enjoying a family gathering. Any experience that triggers the production of adrenaline intensifies emotions and, often, makes symptoms worse as well.

Second, emotions can interact with symptoms in a vicious cycle. For example, being in constant pain can trigger worries about the future. Worry leads to muscle tension, which, in turn, increases pain. You can interrupt this cycle in several ways, for example by learning relaxation to reduce muscle tension or by changing your “self-talk” to reduce worry.

Depression

Depression is common in people with CFS and fibromyalgia. Some of the depression is situational, a reaction to the limits, disruption, losses and uncertainty brought by long-term illness. This type of depression is captured in the remark, “Who could have these conditions and not be depressed?” Self-management strategies are often helpful in response to this type of depression.

Depression may be biochemical, as well, created by changes in the chemistry of the brain. Self-management strategies may also be useful for this type of depression, but treatment normally includes medication, too.

Depression may be triggered by a sense of helplessness, by fear, frustration and anxiety, by loss, or by uncertainty about the future. Signs of depression include feelings of unhappiness or sadness, lack of interest in friends or activities, isolation, suicidal thoughts, and loss of self-esteem. Serious or long-term depression or thoughts of suicide call for immediate help from a doctor, therapist or suicide-prevention service.

Loss

CFS and fibromyalgia usually bring many serious losses. We often experience loss of control over our bodies, loss of friends and loss of valued activities. We may be forced to give up our job and thereby lose income, companionship and challenge. And often we have to abandon dreams, thus losing the future we had envisioned for ourselves. In sum, we experience the loss of the person we used to be and the person we hoped to become.

Loss can trigger a variety of reactions, including denial, worry, anger, guilt, and sadness. An individual may experience some, but not necessarily all, of these reactions, may experience some more than once or may feel more than one at the same time. Working through loss is often a several year process, normally ending in acceptance. Acceptance combines recognition that life has changed with a realization of the need to lead a different kind of life than before.

The assignment for this week is to answer and discuss the following questions:

• What do you do to help yourself feel better when you’re feeling blue?
  
  
• What strategies help you work through the losses brought by your illness?

I will be posting my answers soon. How would you answer these questions?

Love and hugs,

Jessica

Self-Help: Managing Stress

I have never been one to manage stress effectively. If anything, I would try to compartmentalize everything so I wouldn't have to deal with anything as it happens. It seemed so much easier at the time.

Week 4 of the online Fibromyalgia Self-Help course focuses on managing stress. "Stress is a double challenge to people with Chronic Fatigue Syndrome and Fibromyalgia. First, illness adds new sources of stress to those common in everyday life. Second, CFS and FM are very stress-sensitive illnesses. A given level of stress takes a greater toll than on healthy people. Thus, the double challenge: your stresses are multiplied at a time when you are more vulnerable to the effects of stress."

Stress can come from many different sources, including:

• Symptoms: Ongoing discomfort is tiring and worrisome
  
  
• Limits: Frustration from living within strict limits
  
  
• Loss: Loss of control, of income, of friends and of dreams for future
  
  
• Isolation: Stress from spending time alone or feeling different or alienated
  
  
• Money: Financial pressure
  
  
• Relationships: Often strained; may lose some relationships
  
  
• Thoughts: Unrealistic expectations or overly-pessimistic thoughts
  
  
• Uncertainty: Worry about the future
  
  
• Sound/Light: Sensitivity to sensory overload
  
  
• Allergies: Sensitivities to foods and other substances
  
  
• Fatigue: Sleep deprivation
  
  

My post for week 4 follows:

Overwhelming stress is one of the main reasons I had to leave my job and drop out of graduate school. The stress got so bad there wasn't a day that I didn't break down into an uncontrollable and hysterical fit of crying. I don't even have to explain how that affected my pain level.

Things I currently do to relieve stress:

1. Audiobooks. I download audiobooks onto my iPod, lay down with an eye mask to block the light, and be read to. Sometimes I'll do this for an hour or so, but on particularly bad days I've been known to do this the entire day. It keeps my mind focused on the story being told and off of other things.

2. Laughing. Whether it's something something funny I find on the Internet or having a funny conversation with a friend or family. Laughing always eases the stress.

3. Acceptance. This is the hardest part and something I am still working on. Accepting that this is my life right now and I have to learn to understand and cope with this new me. I grieve for my former life and cycle through the stages of grief. When I reach acceptance, I feel at peace. Of course, I still cycle through the other stages at times - just waiting to get back to acceptance.

Target:

1. Rest for at least an hour a day, 7 days a week. Confidence: 10

2. Return to pool exercises, at least 3 times a week. Confidence: 8

3. Hire somebody to do housework. Confidence: 8

Note: As I said before, I always had a hard time managing stress and there are too many times that I don't know what to do. What do YOU do?

Gentle hugs and wishes for a stress-free day,

Jessica

Self-Help: Pacing

Week 3 of the online Fibromyalgia self-help course was all about PACING. Again, the course is based on Dr. Bruce Campbell's book, "The Patient's Guide to Chronic Fatigue Syndrome and Fibromyalgia." The premise of the book and course is to develop personal strategies for managing fatigue and pain, pacing ourselves, managing stress, etc. Each week we are given an assignment and have to post our management techniques to the group. . This is my post on Pacing for week 3:

I've been going through a really tough time lately, which I'm sure all of you understand. I seem to be in a flare that is going into its 7th month and am struggling to find some relief. Despite the fact that I have suffered from chronic pain for 16 years, up until two years ago I was able to finish my Bachelor's degree, start my Master's degree, work full time, and have an active social life. Now I have trouble just getting up and walking to the kitchen. I had to drop out of school, three courses away from a Master of Arts in Education. I had to give up my job. And I've lost my social life, as well.

Pacing has always been an issue for me. I hate when things are undone or not completed, so I tend to get started on something and not stop until it's done - despite the pain it causes. My son constantly reminds me to pace myself, rest more, or simply let him do it. It's hard to give up that control. In my former life, I always had to be in control.

What makes symptoms worse?

• Lack of sleep
  
  
• Emotions
  
  
• Physical exertion
  
  
• Not enough movement/too much movement (trying to find that fine line, the happy medium)
  
  
• Stress

What gives me a sense of control?

• Being able to complete something I started
  
  
• Getting things done
  
  
• Being able to successfully reclaim some area of my former life

Target:
Last week my target was to clean my room, bathroom, and put away laundry. I was only able to put away the laundry. I learned that I should set small, attainable goals and targets each day. Some days my target may be to just wash my hair, others to just rest, and some days I may be able to clean half my room. Small and attainable goals are the key to pacing.

Note: This was a huge breakthrough for me, though it seems so simple. I used to be the person always doing something, despite my pain (up until 2-1/2 years ago). I worked all the time, went to school full time, kept my house clean, raised my son alone. It was exhausting, but I managed. Now I can no longer manage and that was the hardest part. I would try to do the things I used to be able to do and the result was being confined to bed, writhing in pain for days, sometimes weeks. I'm learning to accept my limitations and pace myself.

As I share my postings for this self-help group, I would love to read your responses to the questions I have had to answer in my assignments. What makes your symptoms worse? What are you doing to manage fatigue and pain? Etc, etc. I believe we can learn from each other's responses.

Gentle hugs and pace yourself,

Jessica

Managing Fatigue and Pain

If you've read my recent posts, you know that I'm enrolled in an online Fibromyalgia self-help course. The course is based on Dr. Bruce Campbell's book, "The Patient's Guide to Chronic Fatigue Syndrome and Fibromyalgia." The premise of the book and course is to develop personal strategies for managing fatigue and pain, pacing ourselves, managing stress, etc. Each week we are given an assignment and have to post our management techniques to the group. Week 2 was Managing Fatigue and Pain. This is my post for that week:

I’m still developing strategies to better my sleep and fight fatigue, despite the fact that I’ve suffered from insomnia and fatigue since I was 16. It seems that something will work one week and not work the next. But this is what I’m working on now:

• Putting myself on a sleep schedule. I try to go sleep at the same time each night and let my body decide when it’s time to get up. It’s when that schedule is interrupted that I feel the most fatigued.
  
  
• B-complex sublingual liquid, B12 methylcobalomin sublingual tablets, and D-Ribose for energy.
  
  
• Keeping my mind active, even if I can’t keep my body active. I blog and I play sodoku, Scrabble, and mahjongg on a hand-held game system. I also read a lot of books! Anything to keep my mind going.
  
  
• Laughing. I have animated discussion with my online support group, my son, my mom, my best friend. Laughing can release endorphins that relieve pain (so I won’t add it to the next section), and leaves you feeling good, strong, and awake!
  
  
• Limit any shopping to quick trips. I let my son do the major grocery shopping. When I have to do the shopping, I suffer the consequences in terms of pain and fatigue for days.

I am also still developing strategies to manage the pain of Fibromyalgia and my spinal conditions. My current pain management strategies are:

• Using a TENS unit for back, hip, and leg pain.
  
  
• Water aerobics at the YMCA at least 3 times a week, as well as sitting in their hot tub before and after exercises, to keep my muscles moving.
  
  
• Weekly massage therapy with a licensed Physical/Massage Therapist.
  
  
• Taking medication on a regular schedule and not waiting until I hurt to do so.
  
  
• Pacing myself and being mindful of my limits when it comes to doing any manual tasks.

Target:

I have a ton of things around the house that need to get done. I am trying not to focus too much on the little things, though. :)

What: Clean bedroom, bathroom, and do laundry

How much: at least 20-30 minutes a day with resting periods

When: Evenings

How often: 3 days a week

Confidence: 6

Note: That week I did not meet my target because even that was too much. Thus, the low confidence level. The key is pacing and not overdoing it. I'll go into pacing more in my next blog post.

Love and hugs,

Jessica

Fibromyalgia Wellness Project

The Fibromyalgia Wellness Project, a research study sponsored by the National Institute of Arthritis, Musculoskeletal and Skin Diseases (NIAMS), National Institutes of Health. This project is  conducted by Collinge and Associates, an independent research organization directed by William Collinge, PhD. The project is now inviting participation by people living with fibromyalgia.

What are the benefits?

• You may discover new ways to reduce your symptoms and improve the quality of your life.

• You will be contributing to knowledge that may help others living with fibromyalgia.

Who is eligible?

• Adults (over 18) with fibromyalgia.

• You must be able to read English and complete the assessment forms on this website.

• You must have daily access to the internet at home to use SMARTLog.

What is involved?

• Read the Consent Form and attest to your understanding and agreement.

• Complete the Application Form on this site.

• Fill out monthly surveys (10-20 minutes) on your well-being and quality of life, at the beginning of each month of use of the website, and at the end of the study period.

• Complete the SMARTLog several times each week (about 5-10 minutes each time). You can do this in the evening before bed, or in several visits through the day.

• Ask for and receive SMART Profiles telling you what inputs lead to reduced symptoms for you.

• Try out new strategies on your own or treatments to see if they help you to reduce your  symptoms.

How long is the study?

This study is being conducted in two stages:

-- The first stage (“Alpha”) is three months.

-- The second stage (“Beta”) will be nine months.

-- You can participate in either or both stages.

The longer you participate, the more likely you are to learn strategies that reduce your symptoms. We recommend at least three months.

Sign up here: http://www.fmwellness.org

Hospital Anxiety and Depression (HAD) Score

Results: Hospital Anxiety and Depression (HAD) Scores

You scored, out of a possible 21 for both Anxiety and Depression:

Between 16 and 21 for Anxiety: a rather high level

Between 11 and 15 for Depression: a moderate level

Note: This test is not a substitute for an assessment by a qualified professional. Symptoms can vary with time.

Check your score here!

Global Year Against Musculoskeletal Pain

New Global Year Campaign Launches October 19

Each year, IASP chooses a different aspect of pain that has global implications and sponsors a 12-month campaign to raise awareness of that area of pain. For our 2009–2010 Global Year Against Pain, we selected musculoskeletal pain as our focus.

Why Musculoskeletal Pain?

More people around the world experience musculoskeletal pain than any other type of pain. And the problem is complex and far-reaching, with many different types of pain falling into this category, including neck pain, limb pain, low back pain, joint pain, bone pain, and chronic widespread pain—just to name a few. Yet, despite the wide-ranging conditions and symptoms, all types of musculoskeletal pain share similar underlying mechanisms, manifestations, and potential treatments. The Global Year initiative provides an ideal forum for us to explore, and raise the profile of, these important issues.

Global Year Preparations

The new campaign, which is scheduled for an official launch on Monday, October 19, 2009, will draw much-needed attention to a host of issues faced by those with musculoskeletal pain. The 2009–2010 Global Year Team, led by co-chairs Dr. Lars Arendt-Nielsen (Denmark) and Dr. Kathleen A. Sluka (USA), has been busy preparing a variety of materials, resources, and communications to ensure a successful campaign. Team members have also been finalizing more than two dozen Global Year fact sheets on a number of specifics topics related to musculoskeletal pain, including:

• Evidence-Based Treatment of Acute Musculoskeletal Pain
• Acute/Chronic Musculoskeletal Pain (including Sensitization)
• Rheumatoid Arthritis
• Basic Aspects of Joint Pain
• Repetitive Strain Injuries/Overuse
• Exercise in Management of Musculoskeletal Pain

More Details Coming Soon

Watch for more information in upcoming issues of the IASP Newsletter, as well as special email announcements later this year, with more details about the new Global Year campaign. Several issues of Pain: Clinical Updates in the coming year will focus on topics related to musculoskeletal pain. In addition, the Global Year pages on the IASP website (www.iasp-pain.org/GlobalYear/MSP) will provide further details and resources, including an overview presentation for speakers and chapters to use at their Global Year events. Members will also be invited to sign up to receive periodic email updates on Global Year news.

Ready to Get Involved?

While the Global Year Team will provide the objectives and framework for the Global Year Against Musculoskeletal Pain, the real success of the campaign will come through the efforts of our members and chapters around the world. The team encourages all our members and chapters to make plans now for meetings, symposia, media events, and other local activities in support of this vital initiative.

From International Association for the Study of Pain

Fibromyalgia Pronounced "Real Disease"

Neurologic signs common with fibromyalgia

Last Updated: 2009-09-22 13:01:04 -0400 (Reuters Health)

By Michelle Rizzo
NEW YORK (Reuters Health) - Fibromyalgia isn't all in your head, new research suggests.

In a study, researchers found that people with fibromyalgia were more likely than those without the chronic pain condition to have poor balance, tingling and weakness in the arms and legs, and other "neurologic" signs and symptoms.

Fibromyalgia, a debilitating pain syndrome that affects 2 to 4 percent of the population, is characterized by chronic pain, fatigue and difficulty sleeping. It's a somewhat mysterious condition with no clear-cut cause. Many people with fibromyalgia have faced the question of whether the condition is real.

The new findings, reported in the latest issue of Arthritis and Rheumatism, support a growing body of literature suggesting that the condition is real and also support the possibility that a "neuroanatomical" cause may underlie fibromyalgia.

Dr. Nathaniel F. Watson, of the University of Washington Medicine Sleep Institute at Harborview, Seattle, and colleagues studied 166 people with fibromyalgia and 66 pain-free controls. 

All of them were examined by a neurologist who was unaware of their disease status. All study participants also completed a standard questionnaire on neurologic symptoms. 

In 27 of 29 neurological categories tested, significantly more neurologic symptoms were seen in the fibromyalgia group than in the control group, Watson and colleagues found.

The greatest differences were found for light sensitivity, or "photophobia," seen in 70 percent of fibromyalgia patients but in only 6 percent of pain-free controls; poor balance, which plagued 63 percent of fibromyalgia patients but only 4 percent of controls; and weakness and tingling in the arms or legs, seen in more than half of fibromyalgia patients but in only around 4 percent of controls.

In addition, those with fibromyalgia had greater dysfunction than controls in certain nerves in the brain. They also had more "sensory" problems, motor abnormalities and gait problems.

Within the fibromyalgia group, there were significant correlations between several neurologic signs and symptoms. For example, numbness in any part of the body or tingling in the arms or legs correlated with neurologic test findings. Poor balance, poor coordination and weakness in the arms or legs also correlated with objective findings on neurologic tests.

These observations, Watson told Reuters Health, underscore the need for "careful neurological examinations in all fibromyalgia patients, particularly those with neurological complaints."

Watson cautioned that this study does not confirm a neuroanatomical basis for fibromyalgia and tha much more work is necessary before this can be known with certainty.

SOURCE: Arthritis and Rheumatism, September 2009.

Copyright © 2009 Reuters Limited.

Fibromyalgia and CFS Rating Scale

I enrolled myself into an 6-week, online self-help course about coping with Fibromyalgia and Chronic Fatigue Syndrome. The course came with a textbook entitled, "The Patient's Guide to Chronic Fatigue Syndrome and Fibromyalgia: Take Charge Using Proven Self-Management Strategies," by Dr. Bruce Campbell. The course started yesterday and the first assignment was to read Chapter 1 of this textbook.

I'm only halfway through this chapter and have found something I want to share with you, my readers and friends who also suffer from these debilitating disorders: the rating scale.

Everyone with Fibromyalgia and/or CFS has different circumstances and different levels of pain and abilities. Dr. Campbell says, "To get an idea of how your situation compares to others, place yourself on the CFS/Fibromyalgia Rating Scale."

Rating Scale

100 Fully recovered. Normal activity with no symptoms.

90  Normal activity level with mild symptoms at times.

80  Near normal activity level with some symptoms.

70  Able to work full time, but with difficulty. Mostly mild symptoms.

60  Able to do about 6-7 hours of work a day. Mostly mild to moderate symptoms.

50  Able to do about 4-5 hours a day of work or similar at home. Daily rests required. Symptoms mostly moderate.

40  Able to leave house every day. Moderate symptoms on average. Able to do about 3-4 hours a day of work or activity like housework, shopping, using computer.

30  Able to leave house several times a week. Moderate to severe symptoms much of the time. Able to do about 2 hours a day of work or activity like housework, shopping, using computer.

20  Able to leave house once or twice a week. Moderate to severe symptoms. Able to concentrate for 1 hour or less a day.

10  Mostly bedridden. Severe symptoms.

0 Bedridden constantly. Unable to care for self.

"If there is a discrepancy between your score based on activity level and your score based on symptoms, rate yourself using the severity of your symptoms." So sayeth Dr. Campbell.

Considering my activity level and symptoms, I am currently about a 25. I have been as low as 10 and as high as 70 for activity (with a 30 for symptoms at the same time).

With the help of this course, I am hoping to get to a 40 or 50. Of course, 100 would be ideal but I want to be realistic here!

As I go along in this course, I will share things I learn in an effort to help all of you.

Gentle hugs,

Jessica

CFIDS & Fibromyalgia Introductory Self Help Course

Update: Getting Help With Prescription Costs

The cost of prescription medication is astronomical, even if you do have health insurance. However, because many Fibromyalgia sufferers are unable to work, a lot of us are left uninsured. Because I am one of those unfortunate uninsured souls, I have been conducting an exhaustive search of companies and agencies that offer help in paying for my medication. Being on a fixed income with my Social Security Disability, I don’t want to spend my whole check on medication when the mortgage, car payment, utility payments, etc still need to be paid on a monthly basis. As my 21-year old son adequately puts it, “Being a responsible adult sucks!”

Regardless, it’s something we all have to do. So I have compiled a list of the companies and agencies I have found that offer assistance in paying for medications:

Needy Meds: NeedyMeds.org has information on medicine and healthcare assistance programs. They also offer a FREE drug discount card to take to the pharmacy and receive up to 70% off your medication costs. I have found it to be a one-stop shop to find medicine assistance programs. They also have healthcare assistance programs listed on this site. If I find more of the same, I'll post them in another blog.

Patient Assistance: Another free service. Sign up, enter in ALL your prescriptions, and the site will find assistance programs and coupons for the medications you entered. They also offer a FREE drug discount card to use when picking up your prescriptions!

Together Rx: A public service program created and sponsored by a group of some of the world’s largest pharmaceutical companies gives you a FREE prescription-savings card for eligible residents of the United States and Puerto Rico who have no prescription drug coverage. Most cardholders save 25%–40%* on prescription medicines and products. (FYI: I was told by the pharmacy tech that this one gave the highest discounts.)

Rx Assist: "Patient assistance programs are run by pharmaceutical companies to provide free medications to people who cannot afford to buy their medicine. RxAssist offers a comprehensive database of these patient assistance programs, as well as practical tools, news, and articles so that health care professionals and patients can find the information they need."

Partnership for Prescription Assistance: "Helps qualifying patients without prescription drug coverage get the medicines they need through the program that is right for them. Many will get their medications free or nearly free."

Free Rx Plus: "Free For All® Inc. is dedicated to helping you control your healthcare costs we have discounted programs, providing FREE access to Prescription Medications, Imaging Service and Lab."

Dispensary of Hope: "A not-for-profit network of dispensing sites, sourcing partners and financial partners that assist people without prescription drug coverage. The network provides short-term and long-term assistance to those under 200 percent of the poverty line. Some estimates say that nearly 10 percent of our nation's population lives in this bracket every day."

Walgreens Prescription Savings Club: I signed up for this one as soon as I lost my health insurance. It has saved me at least 50% of my medication costs! There is an annual fee of $20 to $35, however. I will updating this blog post regularly with names and URLs of any new programs I find. They are also being added to my "Links" section on the right side of this page.

In case you were wondering if these actually work, they really do! I had to have four of my prescriptions refilled today. Because I don't have insurance, they would have cost me somewhere around $600 or more. Using the Walgreens Prescription Savings Club and every printable discount card on the sites listed above (and the one sent to me by Together Rx), I only had to pay $116 for my medication. There is a way to get your prescriptions for free, if you are willing to complete the paperwork/have your doctor complete the paper, and send it in. There aren't too many hoops to jump through, but it is definitely worth it. I'll be working on that next and will let you all know how it works and how long it takes to get the medication.

If anybody else has used any of these programs, please let us know!

Gentle Hugs and save a bundle!

Jessica

Love, Understanding, and Support

I have lost many friends since developing Fibromyalgia. I don’t know why they have chosen to abandon me in my time of need, because they did not tell me. I can only assume it was because being a friend to a chronically ill person is difficult. But it doesn’t have to be! I don’t ask for much; just your love, understanding, and support. 

It’s ok to ask me how I’m doing. However, I'm not going to lie and say I feel "fine" just to make you feel better.  I'm not fine. I don’t feel fine. I’m not doing fine. I hurt everywhere, I can’t sleep, and it depresses me. But it’s still ok to ask me, because it shows me that you care.

Please, please don't ask me if I'm getting better. Once I figure out how to manage my pain and other symptoms, the entire world will be the second to know. Until then, everything changes from day to day, minute to minute, even second to second. It's all about learning how to manage the pain and other symptoms when outside stressors, the weather, and sometimes nothing at all can change where it hurts, how it hurts, and how much it hurts. 

I beg of you not to tell me that I need to exercise more or to just “walk it off.” I do what I can – light stretching, moving around, and now even water aerobics. It’s excruciatingly painful. Unless you can feel my pain and understand exactly how my body reacts to every movement, unless you have Fibromyalgia as well as the myriad of spinal conditions from which I suffer, unless you are me, you have no idea what will make me feel better. My son does the best he can in this area, but he doesn’t tell me what I should do to feel better. He asks if there is anything that will help – “Will a bath help?” “Will an ice pack help?” “Will your heating pad help?” “Will your TENS unit help?”

I'm not asking for your pity. I'm asking for your understanding and compassion. If you really want to help me, just talk to me, make me laugh, focus on my abilities instead of my disabilities. If I need to vent, just listen (and it helps to validate my ventings). There is no right thing to say. In fact, more often than not there is nothing that can be said to make things right, make me feel better physically, or change my life or perspective.  But one happy or funny moment could change my day. However, saying nothing at all, not even trying, can hurt me deeply. I am, after all, human.

If I'm crying, it's still ok to talk to me. I don't cry (much) from the pain. I mostly cry because I'm stressed out, exhausted, overwhelmed, angry, feeling emotional, or just plain frustrated. Sometimes it's just one remark that sends me over the edge. At any rate, I cannot control this any more than I can control the weather. Again, I only ask for your understanding and compassion.

In short, don't avoid me because you don't want to deal with my issues. I won't force them on you and, for the most part, won't even mention them until you ask. Unless you're my Momma. I seem to unload all my pain and symptoms onto my Momma because she'll actually listen to me and not judge.

Which brings me to my final rant: don't judge me. I don't have control over my symptoms, which includes my inability to remember what I need to do as well as function as a normal person.

Keep in mind that Fibromyalgia is incurable. And ask anybody who suffers from FMS and they will tell you that it is, for the most part, resistant to medications. If I had to list the number of medications I have to take in order to function (and I use that term lightly), you would be shocked. But, please, don’t tell me that I take too much medication. I have ONE doctor prescribing this medication to me, we review my prescriptions every time I see him, and, as he spent years in medical school to become a doctor, I trust his opinion. Leave my medications to him, as he knows what he’s doing and has my best interests at heart. 

I can understand that maybe some feel FMS is not such a big deal. After all, it's not cancer. It's not heart disease. So, it's not considered fatal by those standards. However, there are people who suffer from FMS who consider suicide as their only option for relief. Dr. Jack Kavorkian assisted suicide in Fibromyalgia patients. People who suffer from Fibromyalgia feel helpless, hopeless, and unable to obtain any relief from pain and the myriad of other debilitating symptoms associated with FMS (which stands for FibroMyalgia Syndrome). So, it is not life-threatening by the classic definition, but don't say this to fibro sufferers. This is not a harmless disease. 

While people who do not suffer from Fibromyalgia, Chronic Fatigue Syndrome, scoliosis, or any other invisible illness may have a lot of advice for those of us who do, we ask that you, unless you are a doctor or pain management specialist in the treatment of these diseases and disorders, please keep it to yourself. We are doing the best we can to manage with what we are given. We don’t want your advice; we don’t want your pity. We want your love, your understanding, your company, and your support.

Invisible Illness Anthem?

Thank you to Angel, who posted this in her blog "Fibromyalgia Journal." People who suffer from an invisible illnesss, such as Fibromyalgia, Chronic Fatigue Syndrome, Lupus, and the like, deserve to have an anthem that speaks to the very heart of what we are feeling.

I second the nomination of having "Unwell", by Matchbox Twenty, as our Invisible Illness Anthem.

Unwell - Matchbox 20

You'll have to click on the "Play full song here" link to hear it all. And you really need to hear it all!

Gentle hugs and rock on!

Jessica

The Funny Thing About Fibromyalgia...

Following are some things I've said on Twitter regarding Fibromyalgia, Fibro Fog (not to be confused with Fibro Blog), and other things related to my condition and situation. My doctor always tells me, "At least you haven't lost your sense of humor!" It's the one part of the "old me" that I've been trying to hold on to. I mean, if you can't laugh at yourself...ok, totally lost that train of thought. I'm not as funny as I used to be, but I'm working on it. 

• You know you have fibro fog when you stare at the On/Off button of your heating pad, trying to remember how to turn it on.
  
  
• I don't know if I slept so much as was knocked unconscious by pain.
  
  
• You know you have fibro fog when you gently stretch, close your eyes...then freak out because you think the lights just went out.
  
  
• Keeping myself occupied by playing Scrabble on my DS. The only words I can come up with are like "doh" and "ow" and "hurt" and the like.
  
  
• Massage therapist: "You're going to be sore tomorrow." Me: "I'm sore every day."
  
  
• PSA: Do not exfoliate while on pain meds. I almost lost my nose in a freak sloughing accident.
  
  
• Feeling good & comfy. It's a nice feeling, but must resist the urge to do something stupid that will aggravate the pain...like clean!
  
  
• You know you have fibromyalgia when you walk...and your elbow hurts.
  
  
• Even in my dreams, I'm sleep deprived!
  
  
• You know you have fibro fog when you try to turn your computer on with the TV remote, and the TV on with your cell phone!
  
  
• I don't care what killed Michael Jackson. I have my own problems.
  
  
• SSA disability approved. Seems like a good enough reason to no longer aspire to anything.
  
  
• Am I the only person who can seriously hurt herself by patting a pillow?
  
  
• Long-term disability from work was approved today based solely on depression. FMS "not disabling". If they only knew!
  

In all fairness, I got the idea from Adrienne Dellwo's Fibromyalgia and CFS Blog on About.com. Laughter is supposed to be the best medicine, right?

Gentle hugs and have a good laugh,

Jessica

30 Things About My Invisible Illness You May Not Know

1. The illnesses I live with are Fibromyalgia, Chronic Fatigue Syndrome, and scoliosis in my neck. And I had a double-level spinal fusion at L4-L5-S1.

2. I was diagnosed in the year: Spondylolisthesis: 1993; Scoliosis and Fibromyalgia (as well as a hematoma on my T2 vertebrae): 2007; CFS: I've always just known.

3. But I had symptoms since: CFS started when I was a teenager, severe back pain started when I was 23 (spondylolisthesis), spinal fusion in 2003, car accident in 2007, FMS diagnosed in late 2007.

4. The biggest adjustment I’ve had to make is that I can't do the things I used to do.

5. Most people assume that I'm blowing this out of proportion, or that if I "just exercise" I would get better.

6. The hardest part about mornings are waking up to pain, stiffness, and another day of the same.

7. My favorite medical TV show is House, of course!

8. A gadget I couldn’t live without is my TENS unit. If you have back pain, I highly recommend you getting one!

9. The hardest part about nights are not being able to sleep because of the pain, or having bad dreams when I do sleep.

10. Each day I take approximately 25 pills & vitamins.

11. Regarding alternative treatments, I am open to it if it works.

12. If I had to choose between an invisible illness or visible I would choose the one from which I would experience less pain

13. Regarding working and career: I am currently unable to work because I can't sit up due to severe lower back, hip, and leg pain.

14. People would be surprised to know that I used to be very active; I was a hard worker; I excelled in college; I'm close to earning a Master of Arts in Education; I was fiercely independent.

15. The hardest thing to accept about my new reality has been that I can no longer do the things I used to do, the things I want to do, the things I need to do.

16. Something I never thought I could do with my illness that I did was take road trips to Dallas, go to hockey games, and still be able to have fun.

17. The commercials about my illness are a joke!

18. Something I really miss doing since I was diagnosed is going to school and feeling well.

19. It was really hard to have to give up my life.

20. A new hobby I have taken up since my diagnosis is researching my illness.

21. If I could have one day of feeling normal again I would enjoy it to the fullest.

22. My illness has taught me to be mindful of my limitations.

23. Want to know a secret? Things people say that gets under my skin are "you should exercise more" or "walk it off".

24. But I love it when people understand and accept my limitation and don't try to fix me.

25. My favorite motto, scripture, quote that gets me through tough times is: When someone I love tells me, "I love you."

26. When someone is diagnosed I’d like to tell them to research every aspect of their illness, and to take that research to their doctor. If your doctor does not allow you to be an active participant in deciding on treatments, get a new doctor.

27. Something that has surprised me about living with an illness is how people will abandon their friendships with you just because they don't know how to handle it.

28. The nicest thing someone did for me when I wasn’t feeling well was made me dinner and brought it over.

29. I’m involved with Invisible Illness Week because I may not look sick, but I am sick.

30. The fact that you read this list makes me feel like someone is listening.

Getting Help With Prescription Costs

The cost of prescription medication is astronomical, even if you do have health insurance. However, because many Fibromyalgia sufferers are unable to work, a lot of us are left uninsured. I was fortunate enough to get Medicaid for one month. But just one month!! Because my Medicaid runs out at the end of this month (August), I have been conducting an exhaustive search of companies and agencies that offer help in paying for my medication. Being on a fixed income with my Social Security Disability starting in September, I don’t want to spend half of that check on medication when the mortgage, car payment, utility payments, etc still need to be paid on a monthly basis. As my 21-year old son adequately puts it, “Being a responsible adult sucks!”

Regardless, it’s something we all have to do. So I have compiled a list of the companies and agencies I have found that offer assistance in paying for medications:

Needy Meds: NeedyMeds.org has information on medicine and healthcare assistance programs. They also offer a FREE drug discount card to take to the pharmacy and receive up to 70% off your medication costs. I have found it to be a one-stop shop to find medicine assistance programs. They also have healthcare assistance programs listed on this site. If I find more of the same, I'll post them in another blog.

Patient Assistance: Another free service. Sign up, enter in ALL your prescriptions, and the site will find assistance programs and coupons for the medications you entered. They also offer a FREE drug discount card to use when picking up your prescriptions!

Rx Assist: "Patient assistance programs are run by pharmaceutical companies to provide free medications to people who cannot afford to buy their medicine. RxAssist offers a comprehensive database of these patient assistance programs, as well as practical tools, news, and articles so that health care professionals and patients can find the information they need."

Partnership for Prescription Assistance: "Helps qualifying patients without prescription drug coverage get the medicines they need through the program that is right for them. Many will get their medications free or nearly free." (updated 08/19/2009)

Free Rx Plus: "Free For All® Inc. is dedicated to helping you control your healthcare costs we have discounted programs, providing FREE access to Prescription Medications, Imaging Service and Lab." (updated 08/20/2009)

Dispensary of Hope: "A not-for-profit network of dispensing sites, sourcing partners and financial partners that assist people without prescription drug coverage. The network provides short-term and long-term assistance to those under 200 percent of the poverty line. Some estimates say that nearly 10 percent of our nation's population lives in this bracket every day."

Walgreens Prescription Savings Club: I signed up for this one as soon as I lost my health insurance. It has saved me at least 50% of my medication costs! There is an annual fee of $20 to $35, however.


That’s what I’ve found so far! The first three listed are FREE databanks of a myriad of programs that can help you pay for your medication. I am updating this blog post regularly with names and URLs of any new programs I find. They are also being added to my "Links" section on the right side of this page.

(((Gentle Hugs!!)))

Jessica