IC Disease

I found out today that I have arthritis in my lower back.  Just what I need - something else to be wrong with me.  I had a MRI on Tuesday and the doctor’s office called me yesterday to tell me the news.  I have had back trouble for years, I have herniated disks and some disk degeneration but that hadn’t gotten any worse compared to my MRI in 2006.  The arthritis though is a new development.  I guess that explains the severe pain I have in my lower back, hips and thighs when I sit up for too long and first thing in the morning.  I thought I had done some more damage to my back when I fell down the basement steps a few months ago but fortunately that didn’t happen. 

Now I have to go back and see the doctor and find out what my treatment will be.   More medication I’m sure…

Italian researchers report that TENS, or transcutaneous electrical nerve stimulation, is considered an effective and safe treatment for the condition vestibulodynia.

Vestibulodynia is a chronic condition that causes burning pain at the opening of the vagina.  Things like sexual intercourse, tampon insertion, and wearing tight clothing can cause this condition to flare. While this condition is not fully understood, it is believed that vestibulodynia occurs when there is nerve damage which alters pain perception.  TENS involves nerve stimulation through the patient’s skin with low, mild levels of electricity.  TENS has helped people with different chronic pain conditions so researchers believe it can help those with vaginal pain as well.

As reported in the British Journal of Obstetrics and Gynecology, Murina’s team randomly assigned 40 women with vestibulodynia to undergo real or “sham” TENS treatments delivered with a vaginal probe twice weekly for a total of 20 sessions. Pain levels were assessed before and immediately after treatment and at 3 months.

Using standard pain scales and questionnaires, the investigators found that the TENS group experienced significant improvements in their pain, whereas the sham group did not. Pain during intercourse and sexual function also improved with TENS.

The investigators warn however that TENS is probably not a one-time cure for vestibulodynia. The effects of using TENS may decrease over time.

Source

No two IC patients are the same and it has recently been reported that there are different subsets or “phenotypes” when it comes to IC Disease. Patients will have different combinations of symptoms, different pain levels,etc. Researchers Dan Shoskes and Ray Rackley (both of the Cleveland Clinic), J. Curtis Nickel (Queens Univ) and MA Pontari (Temple Univ) have proposed a brand new classification system for IC & prostatitis which acknowledges for the first time ever that IC & prostatitis (urologic chronic pelvic pain syndromes) have “subsets” or “phenotypes.” They also provide a clear explanation as to why these often occur.

The researchers believe and propose that IC patients should be classified within one of the six subsets listed below.  They also propose that these subsets be used to create specific, streamlined treatment programs. 

Here are the six subsets:

(1) Urinary Symptoms. Do patients have bothersome frequency, urgency, pain?? Do they struggle to empty their bladder?? These patients might be treated with dietary changes, anticholinergic and/or alpha blockers.

(2) Organ Specific Findings. Do patients have evidence of damage or trauma to the bladder or prostate (i.e. petechial hemorrages, Hunners Ulcers, etc.) These patients might be treated with typical IC and CPPS therapies such as Elmiron, rescue instillations, quercetin, bee pollen, etc.

(3) Tenderness of Skeletal Muscles. Do patients have any muscle trigger points, spasms in the pelvis or belly? These patients are generally treated with physical therapy. Stress reduction is also important because stress can trigger muscle tension.

(4) Psychosocial. Do patients struggle with depression? abuse?? catastrophizing? These patients often benefit from counseling, various cognitive & behavioral therapies and/or the use of antidepressants. Stress reduction is also important.

(5) Neurologic. Do patients struggle with any of the related conditions to IC, such as IBS, fibromyalgia, chronic fatigue syndrome, vulvodynia? Some therapies may include various neuroleptic drugs such as pregabalin, amitryptiline, acupuncture and pain management. Stress reduction is also, again, important for these patients.

(6) Infection. Do patients have evidence of infection? (i.e. positive urine cultures, etc.) These patients are treated with antibiotics usually selected through antibiotic sensitivity testing.

Source)

I recently read a great post on How to Cope With Pain that offers 8 Steps You Can Take Today To Live Well With Chronic Pain.  This is a great blog and website you should check out.  The owner of the site also offers a monthly blog carnival that is very well done.  The post I mention actually was written by a social worker who works with patients who have chronic pain.  She also has her own pain website, Beyond Chronic Pain.  Here are her recommendations on how patients can live well with chronic pain:

• You are your first priority.  The better you feel the better you are able to be there for those around you.  In situations that deal with chronic pain and chronic illness, you have to put yourself first.
• Accept where you are right now and whatever feelings you may have.  Don’t fight your feelings.  Allow yourself to feel however you need to feel.
• Set reachable, realistic goals.  Focus on what you can do and not on what you can’t.  Celebrate each small accomplishment you make and be thankful you made it.
• Don’t minimize your achievements.  Be proud and happy of whatever you are able to do.  Don’t compare yourself with others.
• Use positive self-talk frequently throughout your day.
• Think through what is really important.  Focus on what makes you feel better.
• Be empowered.
• Love yourself to help you heal.  Decide what’s right and good for YOU. 

Dealing with the pain of a chronic illness like IC Disease can be extremely difficult.  While I have somehow learned how to deal with pain, I have still not figured out a way to deal with the agonizing fatigue of CFS.  One thing I have learned the hard way from having both illnesses is that while you may be miserable, it is not your husband’s fault or your children’s fault that you are sick.  Even as miserable as we may get, we still have to remember that our family should not have to pay the price for our illness.  My husband has had to remind me of this over the years and even now every now and again he still has to tell me that. 

I have found for myself the best way to deal with pain is to find something to distract myself from it.  I find that if I get on the computer, play a game with my son and husband, etc.  I can deal better.  I know there can be some pain like those cancer patients deal with that you can’t distract yourself from it.  There are times in the beginning stages of IC Disease too where patients find the only thing they can do for the pain is curl up in a ball, apply heat and lie still.  I know - I have been there.  During those times, remember to take deep breaths, remember to take your pain meds regularly and stay strong.  Better days will be ahead for you.

My brother-in-law died this morning at 10:30 a.m. and one of the greatest men I have ever had the privilege to know is gone from my life.  I wish I could explain to those who didn’t know him what he was like and what it was that made him so special.  He was the type of person who would give you the shirt off of his back, not think twice about it, and go back to working or doing whatever it was he was doing.  And he was always doing something for somebody.  He lived for his family and he doted on his wife like no man I have ever known. 

He had a terrific sense of humor that he still carried up until the last few weeks of his life.  The pain and the destruction of cancer finally took that from him and he became a shell of the man he used to be.  He loved to pick and joke with me and we would have a ball cracking jokes with each other and with me acting like a dumb blonde around him. 

He left behind a grieving wife, two children, two grandchildren and a slew of nieces and nephews who all thought he was the greatest.  We will all miss him terribly and there will always be a void in our family. 

My brother-in-law is dying from cancer and he is actually living his last few days now.  He has been battling esophogeal cancer now for almost two years and it finally beat him.  He has been an extremely strong person throughout his entire battle with cancer and our entire family has watched a strong, big man of 251 pounds widdle down to 100 pounds and become just a shell of the person he once was.  It has been extremely difficult to watch his wife deal with the reality of his dying as well. 

Dying is never easy whether it is someone dying quickly or slowly, as is the case with my brother-in-law.  I think personally it is a little easier to deal with death when it happens quick.  It’s as though we are all just waiting for the phone to ring, waiting for him to go.  It’s an extremely nervous time and while we would rather have him alive and well, we pray that he doesn’t have to suffer any longer. 

He was told Wednesday that he probably wouldn’t make it through the night because he did not have a blood pressure registering.  But then the next morning his blood pressure was back to normal, but he is in what the nurse is calling “a coma”.  He can’t talk to us but he can hear what we are saying to him.  Now the nurse is saying that he won’t make it throughout the weekend. 

The family has been sticking together throughout this whole ordeal and the love is apparent within our family.

I used to get frustrated whenever someone would make an ignorant or stupid comment to me about IC Disease or one of the other chronic illnesses I suffer from.  Do you ever notice how someone who has no idea what it’s like living with a chronic illness seems to have all the answers and thinks they know everything there is to know about what you are going through?

Over the years I have started to try and educate someone when they start rambling off to me about what they “think” it’s like for me living with these problems daily.  I couldn’t even begin to count how many times I have heard that I am sick because of stress, poor nutritional choices and not having a positive attitude.  People who don’t even know me try to tell me I’m sick because of my attitude when they have no clue what I am like.  Sometimes now I will even laugh because it gets ridiculous.

If someone doesn’t understand what you are going through, try to educate them a little.  Don’t bore them to tears with every fact you know about IC Disease but give them the highlights, what the pain feels like, how many times a day you go to the bathroom, & how having the illness affects every part of your life.  No one can ever fully understand what it is like living with an illness like IC Disease unless they have it also, but the person you are educating will at least be made aware of the proper information.

Something else I do is direct people to websites, blogs and online resources that deal with IC Disease.  The most powerful resources are patient’s own personal blogs where they detail the suffering and daily life with the illness.  So if you know someone who doesn’t get it when it comes to your illness, educate them!

I found another great IC Disease friendly recipe that is a great pasta side dish - Fettuccine Alfredo.  If you try this recipe, let me know what you think!  

IC Friendly Fettuccine Alfredo

• 12 ounces fettuccine
• 1 cup evaporated skim milk
• 1/2 cup half and half
• 1 1/2 cups grated fresh Parmesan cheese
• 2 tablespoons butter, cut into small pieces
• 2 tablespoons fresh chives, snipped

1.  Cook pasta according to package directions. 

2.  In a medium saucepan, heat the milk, half and half, and butter over medium heat only until the butter is melted and the mixture is hot.

3.  Gradually stir in 1 1/4 cups of the Parmesan cheese. Cook and stir just until the cheese is melted.

4.  Drain pasta and add to the cheese mixture.  Toss pasta until well coated.

5.  Put pasta on plates to serve and sprinkle with the remaining 1/4 cup of Parmesan cheese & chives. 

This recipe makes 6 servings.

I have had a Squidoo lens for quite a while and I can’t believe I forgot to mention that on here!  My lens is called Living With Chronic Illness and it lists articles, websites, feeds, and other great information to this site, my Fighting Fatigue website, and to other great chronic illness sites across the Internet. 

Want to start your own Squidoo lens?  Just visit my Squidoo page and you can sign up for your own lens there!