2010 Invisible Illness Week Campaign

August 31, 2010 by Sandy Robinson  
Filed under Chronic Illnesses, Fibromyalgia, ME/CFS

Researchers Discover Chronic Pain Gene

August 15, 2010 by Sandy Robinson  
Filed under FM Research, Pain

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.”

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.

The Voices of IC Free Webcast: August 10th

August 8, 2010 by Sandy Robinson  
Filed under Interstitial Cystitis

The Voices of IC will be hosting a free webcast on Tuesday, August 10th at 8 p.m. E.T.  Here is the information for the webcast, as provided by the IC Association:

Gain Insights from Patients, Healthcare Professionals and Advocates Touched by IC

Patients with IC, families, friends and healthcare professionals are invited to participate in The Voices of IC webcast, which will provide a variety of perspectives regarding IC symptoms, diagnosis, lifestyle and social issues and available resources and support.

August 10, 2010
8 p.m. ET
http://www.voicesofic.com

Presented by the Interstitial Cystitis Association (ICA) and Ortho Women’s Health & Urology™

Panel Presenters:

  • Expert IC Doctors—Robert Moldwin, MD & Matthew Rosenberg, MD
  • Patient Advocates—Linda Salin, Teresa McCoy, & Kevin Noa

Join us for this free educational webcast. Learn from a panel of patients with IC and healthcare professionals* the basics of IC and successful strategies for addressing the challenges faced by adults with IC. Panel discussion will include:

  • IC symptoms
  • Diagnosis and the diagnostic process
  • Working most effectively with physicians
  • Lifestyle and social issues facing people with IC
  • Resources and support available for patients and their families/friends.

As part of the discussion, participants will have an opportunity to opt-in online to submit questions to panelists. All questions will be reviewed but only a few may be answered. Panelists will not address questions or comments that are off-topic, offensive or promotional, or include mention of any specific products or treatments, whether they are sold by Ortho Women’s Health & Urology™, affiliated companies, or competitors. Product-specific questions should be directed to the companies that sell them.

How to Participate:

To participate in the Webcast log-on to http://www.voicesofic.com.

Follow the prompts on the site to submit questions to panelists. All questions will be reviewed. Unfortunately, we may not be able to answer every question submitted. Panelists will not address questions or comments that are off-topic, offensive or promotional, or include mention of any specific products or treatments, whether they are sold by Ortho Women’s Health & Urology,™ affiliated companies, or competitors. Please direct any product-specific questions to the companies that sell those products.

Fibromyalgia AWARE Sponsors Contest for Pain Awareness Month

August 4, 2010 by Sandy Robinson  
Filed under FM Awareness, Pain

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

My Sister Has Diabetes

August 4, 2010 by Sandy Robinson  
Filed under Chronic Illnesses, My Journey

My sister found out last week that she has diabetes.  I had been telling her for a couple of months that she needed to have her sugar checked because she was having symptoms:  thirst, excessive hunger, weight loss, and fatigue.  But she hadn’t been to the doctor in 2 years and she’s like my mother and doesn’t like to go to the doctor’s office.  Finally, I had my husband take her blood sugar and it was 276.  She then decided to make an appointment and they called her the same day she had her blood work done and told her she was diabetic.  Her range was a 10.5.  She doesn’t have to take the shots but she is on two pills a day along with pills for high triglycerides.  The doctor put her on an 1800 calorie a day, fat-free, sugar-free diet.  She is losing weight pretty quickly right now but I’m sure she will level off once they get her insulin adjusted. 

It scares me to think that probably in another year I would have been in the same place if I wouldn’t have done something to get mine under control now.  My sugar was starting to get high but with having chronic health issues, I’m always having blood drawn so it’s easier to keep an eye on my glucose levels.  Hopefully, I’m out of the woods for now and I’m going to do whatever I can do avoid having to become diabetic if I can.

Increase In Low Back Pain with Weight Loss

August 1, 2010 by Sandy Robinson  
Filed under ME/CFS, My Journey, Pain

I know this sounds weird whenever I tell people but the more weight I lose, the more my lower back hurts.  I have degenerative disc disease and some herniated discs in my lower back and arthritis as well.  I also have some herniated discs in my upper back (between my shoulder blades) and in my neck.  The pain is getting worse throughout my spine as I lose weight, but I notice it the most in my lower back.  I have lost 20 pounds since the beginning of June and I have always found that in my own personal experience, the less I weigh, the more my back hurts.  I know – it doesn’t make sense – doctors look at me like I’m nuts – but the pain I feel is very real and it is getting worse.

I feel better otherwise – I have more energy, my leg and knee pain has decreased – but the back pain is worse.  I am hoping that someone will read this and will be able to tell me that they have heard of this happening to someone else they know or something.  Any thoughts?

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