IC Disease

While this clinical trial is not currently open for enrollment, keep your eyes open for future news on researchers looking for study participants.  This clinical trial (ClinicalTrials.gov Identifier: NCT00823030) is to determine the amount of improvement in bladder function and pain relief with the administration of 2% alkalinized lidocaine in IC Disease patients.

Once researchers start actively recruiting IC Disease patients, they would like to have approximately 40 patients to properly complete their clincial trial.  This trial is sponsored by the North Shore Long Island Jewish Health System.

Inclusion Criteria:

• Male & female patients ages 18 - 80
• Must have a clinical diagnosis of IC Disease based on the National Institute of Diabetes, Digestive and Kidney Diseases (NIDKK) criteria.
• Written informed consent
• Able to understand and complete a VAS/GRA/modified IPSS assessment

Exclusion Criteria:

• Having a severely disabling concurrent medical condition
• A history of pelvic radiation therapy, tuberculous cystitis, neurologic disease affecting bladder function, bladder cancer, or carcinoma in situ, or urethral cancer
• Evidence of urethritis
• An allergy to lidocaine

Contact Information:

For further information on this clinical trial and to find out when researchers will be recruiting patients, contact:

• Amin S Herati, BA
  516-734-8570
  aherati@gmail.com

Enjoy this past week’s post from Fighting Fatigue.  Again it has been another busy week and there has been a lot of news to post surrounding chronic fatigue and fibromyalgia. 

Fighting Fatigue CFS & Fibromyalgia Blog Carnival #7

Monday I published the seventh edition of the Fighting Fatigue CFS & Fibromyalgia Blog Carnival. I received some great submissions once again and the carnival is a great read.

Resources: Menopause Message Boards & Online Support

My Resources page is growing on Fighting Fatigue as I add more links to message boards and online support for menopause.

Vitamin D Testing Kits Available Online

Vitamin D deficiency has become a popular topic recently in health news and you can now purchase Vitamin D testing kits online to test yourself at home.

I’m Scheduled For Vein Surgery In Two Weeks

In this post I discuss my upcoming vein surgery for phlebitis in my right leg and explain the procedure and what’s going on.

ME/CFS, Fibromyalgia & IBS News Around the Web

The latest Internet news on Chronic Fatigue Syndrome, Fibromyalgia and Irritable Bowel Syndrome.

Link Between Fibromyalgia in Women and Sexual Dysfunction

A recent study shows that there is an association between female Fibromyalgia patients and sexual dysfunction. Read the post to learn more.

Mr. Sandman Would Be My Best Friend If He Would Visit More

With this post I discuss how my illnesses have basically taken over my life and my need for sleep is so great it’s all I think about.

ME/CFS & Sleep Medications

This post discusses the different types of sleep medications that are used to treat the sleeping disorders common in ME/CFS.

Many times, doctors will recommend that female incontinence sufferers try Kegel exercises.  The purpose of Kegel exercises is to strengthen the pelvic floor muscles.  The pelvic floor muscles are used when we give birth, urinate, have sex, and have bowel movements.  There are many things that can cause the pelvic floor muscles to become weak, leading to incontinence.  Some of these are being overweight, childbirth, surgeries, and age.  Having a chronic illness like IC Disease can also lead to incontinence for some patients.

Performing Kegel Exercises

To perform the Kegel exercises, a woman needs to practice contracting the vagina.  In order for her to feel the contraction, she can use her fingers, specially designed exercisers, balls, or foam objects.  The overall goal with doing Kegel exercises is to regain vaginal tightness.

I have been having problems with varicose veins on my right lower leg for quite some time but recently the problem has gotten much worse and the pain has become really bad.  About a month ago I noticed a lump behind my right knee whenever I stood up to walk and the pain was so badly I could barely do so.  After seeing the doctor, I was sent to see a vascular surgeon.  The vascular surgeon sent me for an ultrasound and that is when the technician found the blood clots (phlebitis) in the superficial veins on my legs starting at my upper thigh and going down to below my knee.  The lump behind my knee is a blood clot.

The problem is not a serious one, but it will require a more detailed procedure than just an in office fix that the doctor had hoped to do.  I have to go to the hospital, be put to sleep, and the doctor will go through my groin, fix the problem there and then fix the varicose veins.  He said after the first week or so, I should see a major improvement with pain and my legs getting so fatigued.  I am anxious to have the surgery done because I am tired of being in constant pain. 

I hope everything works out and that he is able to fix the problem.

Welcome to the 9th edition of the IC Disease Health Blog Carnival.  If you would like to submit a health-related post to next month’s carnival, please follow the link at the end of this post. 

Patricia Turner presents Why Adopt Acupuncture for Pain Relief? posted at Radiology Technician Schools.

Joel Gray presents Discovers How To Cleanse Yourself With Birch Tea posted at Health Tips 101.

Joel Gray presents Tips And Tricks To Staying Healthy As We Get Older posted at Health Tips 101.

Ian Richardson presents Colon health: Natural approach posted at Best Natural Remedies Online.

Joel Gray presents Colon Cancer: Risk Factors, Symptoms, and Prevention posted at Health Tips 101.

fightingfatigue presents ME/CFS & Personality Disorders - Latest Research posted at Fighting Fatigue.

B.M. Garrett presents Physical fitness and diabetes posted at i-Diet & Fitness, saying, “A physical fitness program can have multiple benefits for diabetics and those who might be at risk as well.”

ricksworld presents Will It Cure Me Or Kill Me? Pegasus versus Pegasys posted at Rick’s World, saying, “Ever wonder what it’s like to have hiv, hepatitis c, and cirrhosis of the liver all at the same time? If you have ever thought you have it really bad, look at life through my eyes for a minute and you will leave with a new appreciation for life.”

Pregnancy Hut presents What You Can Do to Prevent Preeclampsia posted at Pregnancy Calendar, saying, “Preeclampsia – also known as toxemia – is a condition that occurs when a pregnant woman’s blood pressure rises rapidly, leading to protein in the urine. Many women experience different symptoms, but the most common are weight gain, headaches, dizziness, nausea and vomiting, and rapid heartbeat.”

mybestme presents Prescriptions for free? Yes! posted at My Best Me, saying, “Medical care can be costly, but oh so necessary. There is a government incentive program available to help us out in the need of prescriptions.”

Katy presents Pregnancy and Asthma - What to Expect posted at Katy Meets World, saying, “It is possible to have a healthy pregnancy even if you have asthma; however, you must take extra precautions to keep your asthma under control during this time”

Rachel presents What Causes Dyslexia. posted at Adult Dyslexia, saying, “Although common, adult dyslexia is not well understood. This article explains some of its causes.”

Woman Tribune presents Help Fight Ovarian Cancer with Cupcakes! posted at Woman Tribune.

mybestme presents Attraction, Inspiration, Healing, and Love posted at My Best Me, saying, “A long term health issue can be devastating emotionally. Look for sources to uplift and inspire you as you deal with your illness.”

SJ presents Is Traveling During Pregnancy Safer By Air Or Land? posted at Pregnancy Info, saying, “Many pregnant women need to travel. This article is about whether it is safer to fly or drive.”

Pregnant Woman presents Identical Triplets - Three Bundles Of Joy posted at Pregnancy, saying, “Triplets occur in one of every eight thousand live births”

Dean Moyer presents Microdiscectomy and Herniated Discs posted at The Back Pain Blog, saying, “This is Part Six in the series, What Causes Herniated Discs? In previous articles, we specifically looked at the effect of compressive loading and axial torque and the role they play in producing herniated discs. This time we examine the latest research findings on the downside of physical therapy and the Catch-22 of Rehabilitation.”

Randy Powell presents Are Alkaline Foods Right For You? posted at Eating-Veggies.com: High Alkaline Diet blog.

Anita Bern presents This year everything is going to be different… really! posted at Social anxiety disorder.

That concludes this edition. Submit your blog article to the next edition of the IC Disease Heatlh Blog Carnival using our carnival submission form. Past posts and future hosts can be found on our blog carnival index page.

Yes, even IC Disease patients can eat Mexican because contrary to popular belief, not all Mexican food is hot.  Check out this recipe!  Sounds yummy!

Puree for Thickening:

1 1/4 cup water
1/4 cup Vidalia or Maui onions, diced
3/4 cup baking potatoes, diced
1/3 cup carrots, peeled and diced
1/4 cup celery, diced or 1/4 cup frozen peas
1 garlic clove, sliced

Puree Directions:

Add the water for puree to a medium saucepan and bring to a boil. Rinse diced onions in a sieve under cold running water (to help remove sulfur acids). Add onions and remaining vegetables for the puree. When mixture returns to a boil, reduce heat to a simmer, cover and cook 20 minutes. Let cool slightly then puree in a blender or food processor until smooth. (Can be frozen for later use at this point.) You can make the soup while you let the puree cool a bit.

Soup:

2 1/2 cups beef broth, additive-free (Health Valley makes a good brand)
1/2 cup water
2 tablespoons sherry
1 bay leaf
1/4 tsp. dried parsley
1 lb. lean ground beef
1 egg
1/4 tsp. black pepper (optional)
2 tablespoons fresh mint leaves, chopped fine
1/2 cup green onion, chopped
all-purpose flour
vegetable oil
1/3 cup uncooked white rice
salt to taste

Soup Directions:

In a large saucepan combine the beef broth for the soup, water, sherry, bay leaf, and parsley. Place soup over medium heat and simmer. Add the puree. In a bowl combine the ground beef, egg, pepper, mint, and green onion for the meatballs. Mix meatball ingredients well. Pour a bit of oil into a skillet and heat. Form meatballs about 1-1/4 inches across. Roll meatballs in flour to lightly coat, and fry in oil until browned. As batches of meatballs are done, drop into hot simmering soup.

In the hot skillet you used to fry the meatballs, fry rice in a little oil until rice becomes white and opaque and some grains turn golden. Stir while cooking, scraping up browned bits. Drop rice into hot soup. Cover and simmer soup until rice is tender, about 25 minutes. Add salt to taste. Add water or beef broth as needed if too much has boiled off. Remove bay leaf and serve.

It has been another busy week on Fighting Fatigue trying to keep up with all of the latest news that is available on Chronic Fatigue Syndrome and Fibromyalgia.  Please enjoy these posts and leave me a comment if you regularly check out the website!

Study Reveals Probiotics Can Help Cognitive Functioning ME/CFS Patients

Probiotics are supplemental options that can be taken by people who want to replace the good bacteria in their bodies that antibiotics kill or that become depleted for other reasons. Read this article on how a recent study shows that probiotics can help with the cognitive problems in CFS patients.

Associated Press Article Disses Fibromyalgia

Another article dissing Fibromyalgia has been published and the Fibromyalgia community is in an uproar. Read this post to find out what the National Fibromyalgia Association had to say in response.

ME/CFS, Fibromyalgia & IBS News Around the Web

The latest CFS, Fibromyalgia and IBS information from around the Internet.

Amazon.com: New Books In Alternative Medicine

Amazon.com has announced some new books in alternative medicine that have been published. Some of these look really good so take a look!

FDA Advisory Panel Votes to Ban Darvocet & Darvon Painkillers

Are these popular painkillers going to be banned? Read the post to find out!

National CFIDS Foundation Funds Leukemia Research Investigations

The National CFIDS Foundation has provided grants totaling $225,000 to see if there is a link between leukemia and CFS.

Vascular Surgery A Possibility For Me

The fun just never ends for me! I go to the doctor today to find out if I have to have vein stripping done for my varicose veins.

Fibromyalgia Patient Awarded $75,000 From Georgia-Pacific

A Fibromyalgia sufferer receives a settlement from her employer for forcing her to work beyond her doctor’s recommendations.

It is estimated that approximately 10% of all Interstitial Cystitis patients do not respond to conservative medical treatments.  For these patients, supratrigonal cystectomy and bladder enlargement enterocystoplasty has been used.  To evaulate the results of using this form of treatment, researchers evaluated the results from the patients that had this surgical procedure to treat their IC Disease.

Included in this study, 15 patients underwent the supratrigonal cystectomy and bladder enlargement enterocystoplasty between 1999 and 2006. All patients’ symptoms were reported along with other medical treatments they had tried. All of the patients’ bladder capacities were also measured.

Out of the 15 patients surveyed, 13 had found their urinary frequency due to IC Disease had improved and 11 said they had improvement in pain. 

Source

Opioids are extremely powerful, and highly addictive painkillers that have to be prescribed with caution.  When physicians are treating chronic pain patients it can be difficult to know what to prescribe after milder medications have worn off and no longer take effect.  To help physicians along, the American Academy of Pain Medicine and the  American Pain Society have published guidelines to assist the medical professionals with prescribing opioids for patients who have non-cancer chronic pain.

The guideline, which was featured in the February issue of The Journal of Pain, was created after the review of more than 8,000 published abstracts and nonpublished studies to assess clinical evidence from where the new recommendations were based.

Roger Chou, MD, the principal investigator at the Oregon Evidence-Based Practice Center, Oregon Health & Science University, Portland, Oregon, said:

“This guideline was a true multidisciplinary effort that sought to address in a balanced manner the many challenging issues that clinicians face with regard to when and how to prescribe opioids for chronic noncancer pain. A key part of this process was performing a comprehensive literature review to inform the recommendations — though an important take-home message is that even though the recommendations represent the best judgment of the panel based on the currently available literature, there is still a lot of research that needs to be done.”

The panel determined that opioid painkillers are safe and effective for carefully selected patients who are monitored closely by their physicians. The guidelines state that the physician should determine if another pain medication can be prescribed instead of prescribing opioids. If the doctor determines that opioid pain meds are needed, the physician should conduct a thorough medical exam and look at the patient’s overall medical history and assess whether or not the patient is at risk for addiction.

Source

Here are some more clinical trials currently recruiting IC Disease patients.  Please make sure you read all of the inclusion and exclusion information and don’t get involved in one without first consulting your physician.

Catheter Analgesia Trial

The purpose of this clinical trial is to compare the utility of phenazopyridine HCl vs. placebo in reducing catheter-associated discomfort during the post-operative period in the gynecologic patient using mean VAS measurments.

Genetic Studies In IC Disease

The purpose of this clinical trial is to determine whether or not IC Disease is an inherited disease. The study will include IC Disease patients and their family members.

Linkage Analysis In IC Disease

The purpose of this clinical trial is to understand the basis of IC Disease and like conditions and to study symptoms and the disease as a whole.

Diagnostic Challenges for Male IC & CPPS Patients

The purpose of this study is to determine whether there is a link between IC Disease in men and CPPS (chronic prostatitis/chronic pelvic pain syndrome).