IC Disease

I went to see my doctor the other week due to repeated sinus infections and also because my headaches are getting really bad again.  Even though she changed my medication to oxycontin, I am still not getting any relief.  I am in total misery almost all of the time anymore and the constant pain is beginning to take a toll on my family as well. 

It’s hard to be happy, upbeat and fun to be around when the pain is so bad.  I don’t know what else to do.  I need to get some relief but I don’t want to be so drugged up I don’t know what day it is.  I’m in a catch 22 situation here. 

The headaches have even gotten to the point where I’m waking up because they are so severe.  Any tips?

Enjoy my posts from this week on Fighting Fatigue.  I’ve had a busy week adding more books, websites and blogs to my Resources page. 

Fighting Fatigue CFS & Fibromyalgia Blog Carnival #6

This month marked the sixth blog carnival for Fighting Fatigue. This blog carnival includes some wonderful submissions that you won’t want to miss! Check out the blog carnival today!

The Passing Of A Fellow Blogging Buddy

I found out this week that one of my fellow blogging buddies passed away suddenly. Please visit the blog Disabled 2 Abled in memory of Diane Young.

Resources: Cancer Books & DVDs

I added tons of great books on cancer diet, cancer treatment and coping with cancer to my Fighting Fatigue Resources section. Check these out!

National Fibromyalgia Association: Reaching For Goals

The latest news from the National Fibromyalgia Association. This month the NFA features goal setting and reaching for goals.

Are You Faithful With Taking Your Medications?

Are you faithful in taking the overwhelming amounts of medications and supplementes prescribed for chronic fatigue and fibromyalgia or has the expense and the job itself too exhausting?

Guest Blogger Post: Mind-Body Healing for IC and other Chronic Pain Issues

Welcome to the world of mind-body healing in this guest blogger post from Abigail Steidley, owner of The Healthy Life, LLC Life Coaching Services and blogger of The Vagina Dialogues.

There has been growing concern over the past couple of years from the medical community that chronic pain patients who regularly use prescription opioid medications were becoming addicted to the medications.  In my opinion, the medical community has a hard time believing that those of us suffering daily from so much pain actually take the pain medication because we NEED it, not because we want to get high.  Maybe this latest research will show the medical community what us chronic pain sufferers have been saying all along:  WE ARE MISERABLE!  WE NEED TO HAVE PAIN RELIEF!  TAKING THESE MEDS IS NOT AN OPTION FOR US.  IF WE WANT TO MAKE IT THROUGH THE DAY WITHOUT LOSING OUR MINDS FROM THE PAIN, WE NEED THE PAINKILLERS!

Here is what the research revealed:

 In an extensive review, combining results from 24 clinical studies, the overall rate of prescribed opioid analgesic abuse or addiction in patients with pain was about 3.3%. However, fewer than 2 out of 1,000 (0.19%) patients without a current or past substance-use disorder experienced problems with opioids prescribed for pain.

 Similarly, a clinical investigation of patients receiving daily opioid therapy for chronic noncancer pain prescribed by primary-care physicians found that only 3.7% of patients had a confirmed opioid-use disorder. However, whether or not any of these patients also had prior substance-use problems was not examined.

 A systematic review, encompassing 17 studies of patients with moderate-to-severe chronic noncancer pain who were treated with opioid analgesics for at least 6 months, found opioid abuse in only 0.4% of patients. Signs of opioid addiction were evident in only 1 case out of 2042 subjects evaluated (0.05%). Whether these extremely low rates were in the overall patient population or solely in those patients without prior substance-use problems is unknown.

Physicians need to be looking at each individual case when it comes to treating chronic pain and they need to be listening to their patients to find out that the majority of us are just looking for some relief so we can lead normal lives.

Source

The 2008 annual Asian Interstitial Cystitis Meeting was held solely to work on developing an Asian guideline for an IC publication to come out in 2010. 

It was great to find out that other cultures and countries are working hard to learn more about Interstitial Cystitis.  Participants in the meeting came from Korea, Hong Kong, Japan, Taiwan and the United States.     

Dr. Yukio Homma, Professor and Chair of Urology at the University of Tokyo, started the meeting off giving a report on the Asian Guidelines and the discussion of draft guidelines he had developed with colleagues.  The report stated:

• the name, Interstitial Cystitis, is inappropriate because it refers to inflammation in an area where there is not inflammation seen.
• “Painful Bladder Syndrome” is also an inappropriate name due to the high number of patients who do not have pain as a main symptom.
• Keeping IC as the name but using it to refer to:

1. patients with bladder hypersensitivity, urinary frequency, and/or bladder pain and
2. bladder pathology proven endoscopically by Hunner’s ulcer and/or mucosal bleeding after overdistention and
3. exclusion of confusable diseases (infection, malignancy, calculi, etc.)

The guidelines also state that a new symptom syndrome may be used - “hypersensitive bladder syndrome” or “HBS”. This is a symptom syndrome comprising bladder hypersensitivity, usually associated with urinary frequency, with or without bladder pain. It is designed to capture patients who complain of pain and those who do not.

There’s still time to sign up and join in for the American Pain Foundation’s live chat - Acupuncture, Not Just Needles.  The online chat will be tonight, Tuesday, January 27th, at 8:00 p.m. EST. 

Mayssa Sultan, MPA, L.Ac. and the American Pain Foundation’s PainAid Community will be discussing the subject of acupuncture and its use as part of your pain care plan. Acupuncture and Traditional Chinese Medicine are often used in tandem for pain management.  Come to the chat to learn more about how acupuncture can help you and what to expect if you decide to pursue acupuncture as part of your pain management plan.

Mayssa is a licensed acupuncturist and herbalist who recently completed her Masters of Public Administration through the National Urban Fellows Program.  She was placed at the American Pain Foundation (APF) as part of her fellowship to develop her practical experience in public administration with a focus on health policy.  Following the completion of her degree program, Mayssa was hired to work with APF as a coordinator for the  Power Over Pain Action Network’s Western Region and also to work on improving state policies as they relate to pain.  She is also the co-founder of Integrative Clinics International, a non-profit organization dedicated to long-term solutions for sustainable health care. 

There is limited space for this chat, so please go to the Military/Veteran Section of PainAid for reservation instructions.  If you do not already have a login name and password for PainAid, please click here first to register for access to PainAid.  If you have previously registered with PainAid and have forgotten your password, click here. If you have difficulty accessing PainAid or have any questions, please email Chats@painfoundation.org for assistance.

Welcome to the January 26, 2009 edition of an IC Disease Health Blog Carnival #8.  Enjoy reviewing and reading through all of the submissions below.  If you would like to be a part of the monthly IC Disease Health Blog Carnival, make sure you submit your posts at the link listed at the end of this post. 

I received some great submissions this month and I appreciate everyone’s effort!

Kelly Sonora presents The Health Policy 100: The 100 Best Health Care Policy Blogs - Radiology Technician Schools posted at Radiology Technician Schools.

VikramKir presents Diet Secrets. Diet Plan Basics that Help You Design An Effective Diet! posted at Thoughtfully Vikram….

Dr. Davon Jacobson presents Quick Simple Hemorrhoid Symptom Treatments posted at *Health and Nutrition Facts*.

Banquet Manager presents Bacteria On My Lemon Slice? posted at So You Want To Be a Banquet Manager….

Margaret Garcia presents Coping With A Child With Down Syndrome posted at Becoming a Computer Technician.

Patricia Turner presents Sliding Scale Ambulance Service – Making a Difference posted at Pharmacy Technician Certification.

Dr. Davon Jacobson presents The Simple Way to Deal With Back Pain posted at *Health and Nutrition Facts*.

Dr. Davon Jacobson presents Simple Ways to Improve Mental Health posted at *Health and Nutrition Facts*.

chronic illness

James Hubbard, M.D., M.P.H. presents James Hubbard’s My Family Doctor Blog » Blog Archive » Irritable Bowel Syndrome: Updated recommendations from the American College of Gastroenterology posted at James Hubbard’s My Family Doctor Blog, saying, “new guidelines for treatment of IBS”

Brittney presents Bacterial Vagionsis Cures | BV Cure posted at Bacterial Vaginosis, saying, “Chronic BV can be a serious annoyance. Learn about possible cures for BV and treatment option to soothe its symptoms.”

chronic pain

Dean Moyer presents Sciatica Relapse Question posted at The Back Pain Blog, saying, “Could saline solution be the next big thing for treating sciatica? I know it sounds far fetched, but in a fairly recent study it did demonstrate the same effectiveness as epidural steroid injections. How it works is not yet clear, but it does present another possibility for people dealing with sciatic nerve pain.”

fitness

Kakie presents Anna Goes Hiking posted at Bur Bur & Friends: Community Park, saying, “It is no secret childhood obesity is at an all time high. Experts agree the key to prevention is early childhood education and this could be one solution of many. This book is the fourth in the award winning Bur Bur and Friends children’s book series. (Ages 2-). Bur Bur and Friends is a cast of multicultural characters who educate kids about sports, outdoor exploration and active play through their experiences.”

Health

Tonya presents How to Prevent Pregnancy Stretch Marks posted at My Pregnancy Blog, saying, “Stretch marks are an unfortunate result of pregnancy for many women.”

Alvin Hopkinson presents Acid Reflux Diet - The Best Way to Be Acid Free posted at Acid Reflux Diet - The Best Way to Be Acid Free, saying, “As we grow older, our digestive system is no longer highly reliable to process much of the food we eat. Hence, there should be an awareness for an acid reflux diet.Listed below are the safe foods and foods to avoid in preventing acid reflux or heartburn.”

Aparna presents Ward off frequent colds this winter posted at Beauty and Personality Grooming, saying, “Common cold is s common in winter and here’s the reason for it. Moreover if you have a tendency of catching colds too frequently, then you need not worry as there are several ways to stave off this malady. Incidentally there was a brief mention in ‘The Daily Mail’ that there is a sharp rise (up to 50%) in cold and flu infections this week and this is quite likely to blight the Christmas break. So if don’t want the cold/flu bug to ruin your Christmas week, see to it that you follow these precautions scrupulously and yes, prevention is always better than cure”

Nancy Miller presents Enabling the Disabled – How to Live with a Disability posted at EKG Classes.

Aparna presents Home remedies for hardened palms posted at Beauty and Personality Grooming, saying, “Have you been neglecting your hands lately? You are not alone; most Indian women do – all that household work of cleaning, swabbing and doing the dishes takes a toll on their hands. Their hands take more abuse than just about any other external part of their body; they lose that youthfulness and look rugged and aged beyond years. Their palms especially are more vulnerable and become rough and hard over a period of time. The skin on the hands, as we know, is protected with a coating of oil/sebum. This is what keeps it moist and prevents dry skin. Constant immersing of hands in water, repeated washing with soaps and contact with harmful chemicals in detergents and floor-cleaning liquids (there is very little awareness in third-world countries) make the hands dry and cracked and often causes eczema (also known as housewife’s eczema) and some people are more prone to develop hand eczema than others are. And if this repeated exposure continues, hands also become red and inflamed.”

Katy presents Will Your Insurance Cover Your Pregnancy? posted at Katy Meets World, saying, “If you aren’t already pregnant and plan to become so, you need to go ahead and get yourself some health insurance.”

Pregnancy Hut presents How to Exercise Safely During Your Pregnancy posted at Pregnancy Calendar, saying, “Some ideas for exercising safely during pregnancy.”

Joanne presents Sleep Apnea Treatments And Diagnosis posted at Sleep Apnea Treatments.

Tonya presents IBS and Pregnancy Complications posted at My Pregnancy Blog, saying, “Information about how Irritable Bowel Syndrome affects pregnancy.”

Sam presents The Best Way to Conquer Allergies posted at Surfer Sam and Friends.

Dean Moyer presents Aquatic Therapy for Back Pain posted at The Back Pain Blog, saying, “Here are some tips for avoiding back trouble and ways to Prevent Back Pain with an Ergonomic Workstation.”

Raymond presents MonaVie Acai Berry Juice Scam posted at Money Blue Book.

mental health

Tami Blodgett presents RELAPSE: OOPS!! posted at While On Life’s Journey….., saying, “It is stated that there are approximately 11 phases leading to addiction relapse. MAx Fabry shares these phases and her insight.”

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

Part 1: ME/CFS In Men

This post discusses how ME/CFS is not just a “woman’s disease” and how men suffer from it as well. In some ways, it is probably harder for men knowing they are in the minority with this illness. There are quotes included from male Chronic Fatigue Syndrome patients.

Part 2: ME/CFS & Men

Part 2 of the men’s series covering Chronic Fatigue Syndrome discusses how difficult it is for men to find help and support because most avenues surrounding the illness are geared towards women.

Savella: New Fibromyalgia Drug Approved

A new drug has been approved for the treatment of Fibromyalgia and it is called Savella. This post discusses what Savella is, how it works and what the safety warnings are.

ME/CFS, Fibromyalgia & IBS News Around the Web

The latest internet articles and news surrounding chronic fatigue syndrome, fibromyalgia and irritable bowel syndrome.

The Stomach Flu Got Me

My week of battling the stomach flu and how it takes chronic fatigue patients a lot longer to recover than it does others from minor illnesses.

It seems as though more Americans, approximately 38%, are switching to using complementary and alternative medicines.  According to a survey by the National Institutes of Health (NIH) and the US Centers for Disease Control and Prevention (CDC), these people are also using these alternative treatments (or CAMS) on their children as well.

While alternative medicines are used without any traditional treatments, complementary medications are used along with traditional or “mainstream”, medications. 

According to the survey, pain is the number one cause for people seeking alternative and complentary medication uses.  Topping the list are:

• back pain
• neck pain
• joint pain
• arthritis
• headaches

This survey was conducted by phone in 2007 with approximately 23,000 adults and 9,500 children. 

I knew last week when my son got sick with the stomach flu it would only be a matter of time for me and I would get it also.  Well, I ended up sick all night Monday night and all day Tuesday and today I still feel like crap.  I did stop throwing up yesterday but I still can’t eat and I have the worst headache that several pain pills still hasn’t taken away. 

I have never had a stomach flu as bad as this one was.  Everyone who I know that has had it said that it was worse than anything they ever experienced and I would have to say for me it was rough.  The stomach pain was immense and I continually was doubling over from the pain.  My pain was in the upper part of my stomach, right under my breasts, and I was throwing up every half hour all night. 

It seems that each year the flu is getting harder and harder to contain and that even some of those people getting the flu shots are still getting sick.  How about you and your family?  Have you been safe from the flu this year?

Do you ever feel like you are alone with your chronic illness?  Do you feel like even with support from family and friends that you are still fighting a war by yourself? As often as people say they “understand what you are going thronugh” there is no way they can unless they walk a mile in your shoes.

My husband is very supportive of me but it is a strain on our marriage and relationship at times because I am just too physically drained from my illnesses and feel so miserable that I can’t even focus on a conversation he is trying to have with me. I will also try and hurry him up at times when he is talking because all I can think about is how bad my head hurts and how his talking is just making the pain worse.

It used to be that I would try and explain my actions and symptoms so that he would understand but I don’t even bother anymore. It doesn’t seem to matter.