2010 Invisible Illness Week Campaign

CFS & Fibromyalgia Is No Joke, But We’re Treated Like It Is

I have a lot of fun joking around with my co-workers and some of the people I work with like to comment repeatedly about the fact that I work such limited hours. I often hear:

• “It must be nice to only work one/two days a week”.
• “It must be nice to not have to work a regular job for a living”.
• “Why not get a real job like the rest of us?”

I always take it in stride and have fun, and make joking comments back and my favorite comeback is usually, “If you take my illnesses then I would gladly take your work schedule”.  No one wants to trade, however!  I had a conversation today with one person who said he has a “hard time” believing in the illnesses that I have.  He said everyone has “chronic fatigue” and when he was a kid there was no such thing as “fibromyalgia”.  People were just in pain.  He said that he was tired too when he left work. 

I tried to explain to him the difference between what the illness “Chronic Fatigue Syndrome” is and what normal fatigue is.  He still didn’t get it and probably never will.  I finally just said, “If you lived with me, you would believe it.”, and I walked away.  When someone says they have cancer, multiple sclerosis, or another disabling disease, no one questions it.  When we talk about our illness, it’s like we are constantly defending ourselves over and over again.  Then when I went on break I found myself feeling “less than” because once again someone doesn’t get it.

But then I had my own little pep talk:  I know who I am better than anyone.  These people I work with see me a few short hours a week.  They haven’t known me over the last 20 years.  I’m proud of myself for trying.  I work when I’m able to work, no matter how little it may be.  When I can’t, I can’t.  I think that ought to mean something.  None of these people saw me working 10 – 12 hours a day or longer, 6 and 7 days a week for years.  They have no clue what my life has been like, what I have been through and I don’t owe explanations to anyone. 

I know there are people I work with who see that I try and that I work hard even with the physical restrictions that I have.  But I’m through with the days of feeling like I have to prove that I can do it all even though I physically can’t.  I’m not taking that road again for anyone.  It’s not worth it.  My family needs me too much and I will not ruin myself to prove anything to anyone anymore.

Weight Loss Will Not Cure ME/CFS or Fibromyalgia

I have been successfully losing weight since I started on the Medifast program almost 2 months ago – I started June 20th.  I have lost a total of 23.5 pounds as of today and I am super excited and have felt better than what I have felt in a very long time.  But I am still sick with ME/CFS & Fibromyalgia and I can’t forget that.  I believe that the combination of the weight loss and the new Synthroid medication has given me more energy but I always know that the CFS & Fibromyalgia are there – lurking, waiting to come out and grab me. 

I am happy I have been feeling a lot better but there is always this sense of doom lurking in the back of my mind – no matter how positive I try to be (and for the most part I believe I am pretty positive about the whole thing), I can’t help but keep wondering how long is it going to last?  I started noticing last week, especially when it was so hot, that I was feeling more run down again and I’m not feeling as rested as I was when I get up in the morning.  To me that is always a warning sign that I need to be careful and slow down.  One of my defininte ME/CFS flare warning signals is when I have been sleeping well and I still wake up and feel like I need more sleep I know I need to take it easy.  We have been having such an awesome summer here and I hate to have to stop now…I keep praying that this doesn’t end.  I want to keep feeling better and better. 

A misconception that a lot of people have and even medical professionals have is that overweight or obese CFS and/or Fibromyalgia patients wouldn’t be sick if we were at a healthy weight.  I was told this at a weight loss clinic one time and I have heard it from doctors also.  I had to inform all of them that I was at a very healthy weight when I first became sick and I was sick for almost 10 years before I started having weight issues so that is nothing but a load of crap.  I do know that carrying the extra weight doesn’t make us feel any better and yes, it definitely made me feel worse, but being thin is not the cure.

This is also my own personal experience, but I notice that my knees are not hurting as bad as they were.  The 23.5 pounds off have done a world of good for the arthritis in my knees.  I still have a lot of leg pain (thanks, Fibro!).  I am hoping that more weight loss, massage and walking will help with that.  I am also more flexible.  I was cleaning out my mini-van the other day and I was able to climb in and out a lot easier.  I was wore out, but it was easier climbing around!  There have been a lot of positives to losing weight but it irritates the crap out of me when people assume that losing weight is going to cure these illnesses.  I wish it were that simple.

Researchers Discover Chronic Pain Gene

Researchers at the Hebrew University of Jerusalem have discovered a gene associated with susceptibility to chronic pain caused by nerve injury in people.  The researchers’ findings were reported online on August 5th by Genome Research.   This discovery should open the door for better understanding and treating of chronic pain.  

Chronic pain is a really big problem with 20% of adults suffering from it.  Some people are more likely to suffer more pain than others after the same types of surgeries or accidents and this is why researchers wanted to find out what the difference was among individuals with different pain levels in near identical situations.  According to the article on ProHealth:

To accelerate research in this field, animal models are proving to be critical to understanding the underlying biology of chronic pain in human patients.

First, the international research team – led by Profs. Ariel Darvasi and Marshall Devor at The Hebrew University of Jerusalem and including scientists in Canada and Europe – identified a region of mouse chromosome 15 that likely contained a genetic variant or variants contributing to pain.

However, this region contains many genes, and the responsible variant remained unknown. Next, they undertook two fine-mapping approaches to narrow down the chromosomal locus to an interval of 155 genes. By applying bioinformatics approaches and whole genome microarray analysis, they then were able to confidently identify a single gene, CACNG2, as the likely candidate.

To further test the potential role for CACNG2 in chronic pain, the authors utilized a mouse strain harboring a mutant version of the gene that had previously been used in epilepsy research.

In testing the mice for behavioral and electrophysiological characteristics of chronic pain, they found that the observations were consistent with a functional role for CACNG2 in pain, even though it might be modest.

Their next project was to research human subjects.  The researchers analyzed breast cancer patients who experienced chronic pain for 6 months or longer after they had either part or all of their breast removed.   In these patients, they found that genetic variants of CACNG2 were significantly associated with this chronic pain.

The authors cautioned that although this association will need to be analyzed further, the result is encouraging in pointing to this gene as a significant factor in experiencing pain.

“The immediate significance is the mere awareness that differences in pain perception may have a genetic predisposition,” Darvasi explained.

“Our discovery may provide insights for treating chronic pain through previously unthought-of mechanisms.”

Heat & Humidity Affect My CFS & Fibromyalgia

I have been feeling pretty good here lately but on the days that are really hot and humid I am reminded of my enemies –  CFS & Fibromyalgia.   Yesterday and today have been a couple of really rough days for me as far as the major fatigue and pain.  It reminds me somewhat of the cold, wintery days when I can wake up and know that it is either snowing or really cold out because my body feels the temperature – it’s the same with the heat and the humidity.  I woke up yesterday and this morning with a bad headache and in a lot of leg pain and I knew instantly that it was hot and humid outside. 

This is what sucks about CFS & Fibromyalgia – it doesn’t seem to matter what time of year it is, what season it is – there is always something about the weather that affects our bodies and makes these illnesses flare up.  Temperature sensitivity is a common problem among ME/CFS & Fibromyalgia patients.  Some of us can’t tolerate the cold weather, some of us can’t tolerate the hot weather, and others of us (like me) can’t tolerate either.  My fingers, ankles and legs will swell up like crazy in the heat and that just makes the pain that much worse.  In the winter, I feel like the cold goes right to my bones.

I do not only feel more of the CFS exhaustion in the heat, but I also feel more of an overall sluggishness and tiredness that is different from the CFS exhaustion and fatigue we normally experience.  I want to sleep more also.  I have been having a lot of problems staying awake the past two days.  The only thing that I have found that helps is to get a massage or take a dip in the pool at my sister-in-law’s house once the hottest part of the day is over.  Today I was too tired to do even that.  I keep the air-conditioner on and the house very cool but on days like this it doesn’t seem to cool as well. 

I drink a lot of water but I always feel dehydrated on these really hot and humid days also.  So in addition to being extra tired and wanting to sleep more, I then am constantly running to the bathroom because I’m drinking extra water and I end up wearing myself out more because I don’t get the rest I need because I’m up every 10 – 15 minutes.  It’s a mess. 

I would love to hear some suggestions as to what others do to keep their bodies cool and if you have found ways to keep your symptoms minimal during the summer heat.

New Book On Managing IBS Symptoms

I receive monthly newsletters from Sophie Lee at IBS Tales and she wrote this month about a new book she reviewed called 50 Things You Can Do Today to Manage IBS.  I haven’t personally read this book yet but Sophie Lee writes a good review giving both the pros and cons of the book.  She states in her newsletter that this book does concentrate mainly on treatments for IBS and the herbal and supplement treatment recommendations given are not ones that you normally see given elsewhere.   She also lists what she doesn’t like about the book so if you are interested in purchasing the book (which you can do at the link above), please make sure you read her entire review before doing so. 

Irritable bowel syndrome is one of the common symptoms in ME/CFS & Fibromyalgia that can range from mild to debilitating in some people.  I have suffered from IBS for years but it is one of the symptoms that most people won’t hear me complaining about.  My IBS has improved over the past 10 years I would say and mostly due to the fact that I eat better than what I used to.  When I first became sick with CFS & Fibromyalgia, I was very thin and I ate very little during the week.  My husband and I would eat out on the weekends and my stomach would get thrown all out of whack and I would get extremely sick and my IBS would flare very badly.  Once I started eating more on a regular basis and eating better foods, I didn’t have as many problems.  I have always had issues and probably always will but the exhaustion has always been so bad for me that everything else pales in comparision. 

I have most of my IBS issues after eating out in restaurants and I blame it on the chemicals and preservatives that are put in the food.  I also avoid greasy, fried foods.  My stomach does not like those at all.  I used to hate going out to eat because I knew that as soon as we would eat out, I would end up in the bathroom or that my stomach would start on the way home and the pains would get so bad I would have to find a bathroom fast.   Thank God those days are few and far between now.

The causes of IBS are still unknown, but research has shown that approximately two-thirds of IBS patients have abnormally low thresholds for experiencing pain in their bowels. Research has also shown that the muscles of the intestines are over-reactive in many IBS patients, contracting excessively in response to stimuli like food, stress, and pressure. This is the likely cause of the crampy bowel discomfort many IBS patients feel after meals and under stress. 

Do you suffer from IBS and is your IBS mild, moderate or severe?  Please comment!  Sorry that comments are held for moderation due to spam messages.

Fibromyalgia AWARE Sponsors Contest for Pain Awareness Month

September is Pain Awareness Month and the National Fibromyalgia Association and their Fibromyalgia AWARE Magazine is sponsoring an E-card contest.  The theme is “Pain Hurts Everyone”. 

Put your imagination to work and create a still image E-card to help spread the word about Pain Awareness Month. Winning artists and their E-card will be featured in an upcoming issue of Fibromyalgia AWARE magazine.

For the contest rules and guidelines, please visit the link I’ve included below…

Pain Awareness Month E-Card Contest

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