Only 11 days left until the 3rd Annual Philly Bike-Walk-Roll for Pain Relief!  Participate!  Donate!

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This is a guest article by Arnon Krongrad, MD, who is the principal investigator of the prostatitis surgery clinical trial.

One hears that women suffer pain differently and more intensely than men.  The State of Pennsylvania even recently passed a resolution marking Women in Pain Awareness Month.  But there are also pain conditions that affect only men.  In addition to pain, these diseases can lead to men feeling rejected by their doctors, families, and friends.

Consider prostatitis, which annually causes an estimated 2 million doctor visits just in the US.  There are 2 broad categories of painful prostatitis:  acute and chronic.  Both are associated with pain, but the acute form is commonly caused by a bacterial disease that’s easily cured with antibiotics.  Not so for the chronic type.

Chronic prostatitis is characterized by episodic and, at times, very intense pain in the perineum, pelvis, urethra, lower abdomen, lower back, and legs.  Like so many other types of chronic pain, this illness is often accompanied by fatigue, low energy, mood dysfunction, and inability to think clearly.  The illness can be so severe as to lead men to suicide.  While it’s not cancer, neither it is benign – it can be ruinous and potentially deadly.

Compounding the symptoms of the disease are the frustrations of interacting with friends, family, and medical professionals.  Chronic prostatitis has been cited as a main reason for disrupted relationships and divorce.  Patients complain that they miss work because of the disease.  But at times their greatest anger and frustration is directed at doctors.  Men with chronic prostatitis routinely report being told that their symptoms are ‘all in your head.’

Why is chronic prostatitis not more effectively treated?  Probably most importantly because a cure is not known.  Despite the investment of millions of dollars and years of research, chronic prostatitis many times doesn’t respond to treatment.  Patients try antibiotics, alpha blockers, prostate massage, pelvic trigger point release, tranquilizers, anti-inflammatory medications, prostate injections, over-the-counter supplements, spinal implants, pudendal nerve decompression, and partial prostatectomy.  When this array of treatment doesn’t work, they can become frustrated and depressed.

Laparoscopic surgery treatment of chronic prostatitis may offer some hope.  This surgery is currently being studied in an ongoing, prospective, IRB-approved clinical trial.  Results will be published once it’s completed.  We hope that an effective treatment for chronic prostatitis is confirmed by this research trial.

Dr. Krongrad invites you to keep up with prostatitis research at his Prostatitis Blog and join the Prostatitis Social Network.

Thanks to Dr. Krongrad for sharing this information.

Grand Rounds is published this week at Blog Around the Clock.

This was an entry in our recent contest and was submitted by Esther.

This is optimistic and helps me smile when I’m having a hurricane-ish day.  It’s got some really fun comments too.

1000 Awesome Things

The website Esther submitted has something new each week to make you smile.  I’ve added it to the website posts I get emailed to me each day.  I especially liked:

• When characters in movies visit places you know.  I grew up in North Jersey, so loved watching the Sopranos wander around my old area and read The Star Ledger.
• Digging a hole in mashed potatoes and filling it with gravy.  Ah, childhood!

Thanks to Esther for the great website!  Thanks to Myles for the photo from Flickr.

This is the last entry for our contest.  Many thanks (!!!) to all who participated.  I was truly inspired by your articles, poems, and all you sent in.  Thanks so much.

Welcome to the August Pain-Blog Carnival, some of this month’s great writing related to pain from other blogs and websites.  I hope you enjoy the selections!

Going Down Swinging shares a wonderful article, A Message to Spouses and Partners of Those with Pain.  She also reports about her ketamine treatment.

The Truth about JRA suggests how to still exercise if you’re stuck in bed.

Phylor’s Blog has some great suggestions about improving the doctor-patient relationship in I Have My PCP on Speed Dial.

365 Pain Free Days explores the balance between being cheerful and telling it like it is.

Chronic Babe has been offering some great carnivals lately.  Check out her themes such as Interacting with Health Care Providers and Who’s on Your Support Team.

CRPS/RSD A Better Life shares a video series about mirror treatment for pain.

Psychology of Pain offers a link to fMRI research on pain (scroll to the 8/10 article).

Nickie’s Nook writes about how creativity and art projects help her cope with pain.

Rest Ministries is getting ready for this year’s Invisible Illness Week.  Check out what’ll be happening Sept 13-19 and how you can participate.

In Sickness and in Health writes an interesting article about couples where both partners have a chronic illness.

Next month’s carnival will be on Wednesday, September 29.  If you have a pain-related blog you’d like me to consider including in next month’s carnival, let me know here.

This week’s Grand Rounds is at Cartoon Guide to Becoming a Doctor, with a theme of funny posts.

Pain itself is invisible.  But its affect is enormous.  The Connecticut Pain Foundation has supported a project to make pain more visible.

"Invisible Man" sculpture by Elizabeth Catlett

The INvisible Project is a photojournalistic showcase of the day-to-day experiences of real people living with chronic pain.  Photographer Syd London is working to make visible what is often hidden behind the walls of hospitals and bedrooms.  The goals of the INvisible Project are to create chronic pain awareness, empower survivors and generate change.  Through visual images, the INvisible Project will contrast the fragility of the physical body with the determination and strength of the spirit.
 
To learn more about the INvisible Project, and how to participate in upcoming projects, visit INvisible Project.

This is Part 2 of an entry for our recent contest and was written by Grace, who hosts the website Ms. Grace Wale’s Blog.  (Here is Part 1.)

Hello, I am Grace.  I’m 23.  I live in Wales in the U.K. with my husband Linus and our rescued animals.  Below are some pictures and writings about my journey.

Art therapy working as physiotherapy

My lovely art therapist friend taught me how to use art therapy as physiotherapy.  I can use a little brush to work my arm muscles, and can use giant, yet light brushes when I’m very ill and in lots of pain, as they take much less effort to use.  Much more fun than repetitive exercises.  I’m an artist, not a sick person!

Creative activities like photography

We photograph our healing journey.  We use creativity to change the focus.  This changes the feel of all the things we have to do.  Hospital visits became creative expeditions, not just scary, painful, exhausting appointments.

Journaling

I’ve journaled for years, and this helps so much.  I’m not sure what it is which makes me record so much.  Perhaps the idea that, if a life is worth living, it’s worth recording.  It can be a celebration of all the joys in my beautiful days, and being grateful for them.  I know it helps me to reflect and to dismiss irrational thoughts, and to counsel myself.  I know it helps make sense of the confused, hurting mess I sometimes have in my head, and it’s one of my selfcare methods.  We can change lots of things…  it may take time, and it may be hard, but we can.  Or, we can change our attitude about them.

Prayer and meditation

This too is a deep part of my healing process.  A favorite prayer of mine begins, “Oh God, make me brave for life, oh much braver than this, let me straighten after pain, as a tree straightens after the rain, shining and lovely again.”  I sit with the pain and the feelings, I pray, and I use mindfulness meditation.

Service to the world
We find fulfillment and purpose in writing cards and letter to people in our support groups.  I’m not always well enough to write, so when this isn’t possible, a postcard with a few lines is better than nothing at all.

Awareness raising
May is M.E. (Myalgic Encephalopathy/Encephamyelitis) Awareness Month and Fibromyalgia Awareness Month.  They are 2 of the health challenges I live with.  We celebrate these weeks by taking part in prayers/vigils, asking doctors and hospitals to display posters, and putting posters up in our windows.  AYME has a great list of ways to be part of support weeks while bedbound or housebound.

Appreciations

I appreciate what I have and live life like I mean it, with the pain and the problems and the miracles, all of it, every day.  Living in awareness, with gratitude.  For example, today I’m grateful…  that I’m well enough to do some writing, that my feet are warm, and that I have a lovely cuddly dressing gown to wear.  I love my life.  I think my life is better now, even though it may be filled in many ways with pain.  I see so much beauty.  I can reach out and LIVE.  All the love and the hope and the joy in which I live shines though.  And I am grateful.

What I have learned from coping with pain?  Gentleness, compassion, other people have fights, everyone you meet is living their own struggle, be kind, live your dreams, do it now, beauty and preciousness of life, how lucky I am, wonderfulness of the world, how to survive one breath at a time, overcoming fears, how strong I am, listening, consideration, service to the world, ever learning, it’s a journey, going back and stumbling and climbing and resting and healing all the time!

Thanks to Grace for sharing an amazing story!

25 days left until the 3rd Annual Philly Bike-Walk-Roll for Pain Relief!

This was an entry for our recent contest and was written by Grace, who hosts the website Ms. Grace Wale’s Blog.

Hello, I am Grace.  I’m 23, I live in Wales in the U.K. with my husband Linus and our rescued animals.  Below are some pictures and writings about my journey.

We’re reaching for wellness
I want to be well and to be whole and healed now.  But sometimes “healing isn’t about getting better, but about letting go of everything that isn’t you…  and becoming who you really are.” – Naomi Remen

We are on our healing journey

This healing lifestyle involved some major and amazing changes.  I drink a lot of green juice.  Green juice is lovely.  It has lots of vitamins, minerals, calcium and greens in it.  You juice organic cucumber, celery, broccoli, a little bit of apple, kale, spinach, or lettuce or other seasonal green leaves.  You can add cinnamon to taste, which makes a big difference.  I drink a litre for breakfast daily.  This way, even if I’m too ill or have too much nausea to eat much else all day, at least I’ve had some greens and goodness.  I find it much easier than trying to chew through big salads.

We do lots of gentle healing exercises, adapting the exercises for the health challenges and impairments I live with.  Gentle exercise can help with pain, stretches are good and endorphins are fabulous.  Exercise also helps to calm our thoughts and give us space.  Focusing on and inhabiting your body, looking after it and giving it the best possible chance to heal, even if you’ve been given the “incurable” label.  That doesn’t mean that our bodies aren’t doing well in lots of other ways – for example my lungs are doing well, and my little fingers are great!  Yay me!

We had another (additional) new diagnosis.  This was very hard, and I was very scared.  I’m now trying to look at them not as new, additional illnesses to add to the (it sometimes feels like) ever-growing list, but as pieces of the puzzle.  Just different names for things we were already living and coping with.  When this happened, I had lots of cwtches (welsh word for hugs or cuddles) from my darling, true love Linus.  I got angry and scared.  I bought a ton of books about the new condition, because it made me feel empowered and in control.  We came up with a plan.

Coping Daily

Mornings are very hard.  So is the rest of the day to be honest, but we’ll just look at the mornings for now.  We try and make mornings as good as possible.  There is inspiring, affirmational music playing.  Because being washed is particularly hard and painful, the bathroom is decorated with things to remind me how well we’re doing, and funny things too.  Right now we have up a list of affirmations to be thought while teeth are brushed, such as “I am healing” written on the bathroom mirror in “boudoir” red.

Gentle activities and ‘furry therapy’
We do lots of pacing, which helps to manage the pain levels.  Each activity has a colour.  Red for high energy activities, like reading and using the computer, yellow for medium energy activities, like listening to gentle music and audio books, and green for rest.  Rest is lying still, not thinking about things, and resting.

‘Furry Therapy’ is a very important part of our healing process.  We have time cuddling the animals, and it provides lots of cheer, distraction from pain, companionship, company and something to look forward to.  As all our animals are rescued, it means that we have this wonderful opportunity to give them lovely lives.  Even though I’m not well enough to work in an animal sanctuary and don’t have enough money to help them by donations, I can do good by spending lots of time and love with the rescued animals we live with.

Art therapy

I love art therapy.  A friend of mine is an art therapist and does the therapy with me.  It helps express feelings and situations and fears that you might not be able to put into words.  There are some wonderful self help books about it.  I use “The Art Therapy Sourcebook.”  Some of the exercises I’ve used are:  when I’m upset or struggling, I draw what I feel.  At first I thought that this was silly.  But then one day, I had all the paints in front of me, and I just picked the colour that seemed the best.  It was a deep teal, and I just closed my eyes, put the brush on the paper, and made a mark.  I moved the brush over and over, as all the feelings were moving inside me.  It turned eventually into a picture of the ocean.

Another suggestion is to take a pen or pencil and just scribble onto the page.  Then you go back and pick shapes out of the scribbles, and colour them in and make a picture.  Another is to draw around my hand, then write all the good words I associate with my life on the inside and all the negative words on the outside.  It helped me to remember that I’m not my illness, nor the symptoms, nor the labels people give me.  I am me, and that’s all I need to be, and that is beautiful.

Grace’s wonderful photo journal will be continued this Friday.

Up to 72% of people undergoing an amputation develop phantom limb pain (PLP).  This type of pain is quite difficult to treat with medications or injections.  However we do know that mirror therapy achieves excellent results in reducing or eliminating this pain.

But how about preventing phantom pain?

Dr. Steven Hanling and others at the Naval Medical Center in San Diego had patients use mirror therapy prior to amputation in a small group of 4 men.  The patients were young, active duty men, 3 having trauma due to explosions (IED’s) and 1 suffering a fall.  They had experienced pain for 4-17 months prior to amputation.

The patients used mirror therapy for 2 weeks prior to amputation.  In mirror therapy, the painful body part, let’s say a hand, is put behind a mirror.  The mirror is arranged so that it looks to the patient like he has 2 normal hands.  While watching the reflected “good” hand in the mirror, the patient would do movements of either only the good hand or both hands.

It’s thought that by watching normal movement, the brain learns everything’s ok.  In other words, the visual system is used to re-train the brain that movement is fine to do.  Then, pain signals decrease.

In the study described above, 1 patient experienced no limb pain or phantom limb pain, 2 patients has mild limb pain and mild PLP, and the 4th patient had moderate limb pain with brief, moderate episodes of PLP.  These are significant results and should encourage more studies of mirror therapy prior to amputation.

The study is:  “Preamputation Mirror Therapy May Prevent Development of Phantom Limb Pain: A Case Series,” in Anesthesia and Analgesia, Vol 110, February 2010.

This article was an entry in our recent contest and was written by Jeisea, who hosts the excellent blog CRPS/RSD A Better Life.

Recently a young Aussie girl fulfilled her dream.  Not yet 17, Jessica Watson sailed alone around the world in seven months.  Humble in her achievement, Jessica described herself as an “ordinary girl.”  She said, “You just have to have a dream, believe in it and work hard.”

Sometimes when we deal with chronic pain, taking life one day at a time seems enough to manage.  This works well when things are really difficult.  But when things are improving, having a dream can be empowering.  Something to work towards, a reward at the end of all the hard work.  A dream doesn’t have to be big, but it works best if you really want it.

Each of us who has chronic pain has had to change, give up and compromise with so much.  Maybe it’s time for us to dare to dream a dream again.  Thanks to Jessica for the inspiration.

And thanks to Jeisea for sharing the uplifting message.

32 days left until the 3rd Annual Philly Bike/Walk/Roll for Pain Relief!

This article was an entry in our recent contest and was written by Jan.

One of our problems of experiencing pain is the fear that it will go on without relief.  Worrying about that creates its own tension and increases the pain.  It begins to feel like a never-ending cycle, and the fear becomes like being lost at sea with sharks all around.

I often use distraction to relieve this pain and fear.  I start by beginning to relax my body in phases, and then I think about being in a small boat on the ocean.  I’m close to shore and the boat is tethered, so I don’t have to worry about being taken out to sea unawares.  I’m lying down in the boat in a comfortable position, enjoying the gentle rocking of the boat by the waves.  Usually I imagine myself to be alone, but having a close friend with me would be all right, too.

I close my eyes for a moment so that I can savor the smell of the salt air, listen to the birds overhead, and relax my body step by step.  When I’m resting easy, I open my eyes and enjoy the clouds, like I did as a child.  I think about what pictures the clouds make or their inherent beauty, not making the exercise too laborious.  I’m warm enough that I don’t think about my muscles getting tense with cold or windy air.  The rocking of the boat may remind me of the tempo of music that I remember with pleasure or perhaps of the safety of a child being rocked by her mother.  I let my mind go wherever it wants to go while staying in the moment – no critique or limitations.  I smile to myself and my mood lifts.  I feel one with the ocean.

Sometimes I go to sleep with this, and that’s ok.  It’s very restful sleep and I’ll awaken renewed.  Or if I don’t fall asleep, I bring myself back to reality after a while and am pleased that my pain and my fear is gone, even if only for that time.  Most often, however, the pain is relieved for a long time, and life is better.

I use this scene at other times too, such as when I’m in an MRI machine with the wall about 6 inches from my face, or when I’m sleeping in a lower bunk at a camp, underneath a heavy person.  Now, there’s a leap!!

Thanks to Jan for this helpful, relaxing suggestion!  Thanks to Needoptic for the photo at Flickr.  The topic for this week’s Chronic Babe carnival as well as Grand Rounds at Dispatch From Second Base is interacting with your doctor.

Carpal Tunnel Syndrome is a condition with pain, numbness and weakness in certain areas of the hand.  The “carpal tunnel” is a narrow canal in your wrist that protects a major nerve going to your hand and tendons that bend your fingers.  When this nerve is pressed upon, numbness, pain and weakness can result.

Who gets carpal tunnel?  People at risk include those who do repetitive tasks such as assembly line work (manufacturing, sewing, cleaning, food packing), data-entry workers, and computers users.  Women are 3x as likely to develop carpal tunnel compared to men.  Illnesses such as diabetes that affect nerves make them more susceptible to the condition.

Fortunately, proper treatment usually relieves the symptoms and restores normal use of a patient’s wrist and hand.

A recent study by Zanette’s group from Italy looked at the spread of carpal tunnel symptoms to other areas of the hand and up the arm.   Spread of pain occurred in 33% of patients.  Other symptoms included sensitivity to temperature and touch, and pain getting worse and worse with repeated stimulation.  The researchers proposed that sensitizationwas occurring in the spine and brain.

Importantly, because of these changes in the spine and brain, pain may persist even after treatment of the wrist area.

Another article about sensitization is “Pain Brings on More Pain.”

The study: “Central sensitization in carpal tunnel syndrome with extraterritorial spread of sensory symptoms.”

You can find more info about carpal tunnel at these website:  NIH and Mayo Clinic.