My Story: You Don’t Look Sick!

My Story: You Don’t Look Sick!

The beginning of my journey with illness is a story similar to so many others I’ve heard — female, prime of life, symptoms including what I call the 3-legged stool of chronic illness: pain, fatigue and memory loss.

Medical tests were inconclusive, negative, or alternating between the two. I saw the wrong doctors, who offered the wrong diagnoses and we all waited around for me to get better while I got worse. This process wasted a lot of time, in my case 7 years.

Finally I found a really good internist, a doctor who specializes in diagnosis. This is where I should have begun my search, but I’d never been sick, so I didn’t know.

Joy Selak

Joy Selak

I clutched his arm and said, “I know something is really wrong with me. I’m afraid I’m going to die before I find out what’s killing me. Please, help me find answers.”

He squeezed my arm, went to work and soon I had diagnosis #1: Interstitial Cystitis, a painful bladder disorder. He referred me to other practitioners and specialists, and they helped me find more answers. I became a grateful member of the “good doctor club,” that small group of dedicated, skilled physicians in a community who respect, refer and consult with each other. The good news for patients is that you only have to find one of them to get in the club.

In less than a year I had a poker hand of diagnoses and was well into treatment that finally brought my symptoms under control. I’m not saying they went away, but I was no longer getting sicker. In addition to IC, my rheumatologist diagnosed mixed connective tissue disease and fibromyalgia.

I decided to have breast implants removed and learned one had ruptured, presumably years earlier, adding another piece to the puzzle of my worsening health.

All of my diagnoses were chronic conditions; poorly understood, difficult to treat and with no known cause or cure. Treatment, therefore, was trial and error, an ongoing experiment to discover what was driving my symptoms and what therapies, medications, combinations or doses might ease them. I made lifestyle changes to support my health. I learned to rest, reduced scheduled activities and spent more time quiet and alone.

I made the painful decision to leave my professional career and spent 2 years fighting to win my disability claim. Becoming an informed, engaged patient, accessing quality care, and demanding my rights from health and disability insurers became my new, full-time job.

One day I told my doctor, “I’m still sick, but I don’t feel the same way about it. I’m not terrified. I have some control. I’m learning to live with illness, to build a life that includes it, instead of fighting it all the time.”

We began to talk less about me, and more about the journey through illness. These conversations resulted in a book we wrote together. We believe patients experience illness in evolving phases, which we call Getting Sick, Being Sick, Grief and Acceptance and Living Well. We encourage physicians and patients to work together to recognize these phases and navigate them, mastering the lessons and skills inherent in each, so that patients might learn to live well, even if they can’t get well.

Then, just as I thought I had this new life all figured out, I began to have pain on the right side of my face along the upper jaw. I spent three futile years replacing fillings, enduring root canals and even undergoing sinus surgery, but nothing helped. Finally, and again, a wonderful internist listened to my desperate plea for relief and said, “I think you have Trigeminal Neuralgia.”

He called his favorite neurologist in the good doctor club, asked what she prescribed for the disorder and gave me a 2-week prescription. “Take this,” he said, “if you get better, go see her. If you don’t, come back. We’ll keep searching.”

Two days later I made an appointment with her and learned Trigeminal Neuralgia is known as, “the worst pain known to science” and “the suicide disease.” She offered what she hoped would be effective treatment, but once again, no cure.

A rolling tsunami of grief and self-pity threatened to drown me. I had to go back to the beginning—Getting Sick, Being Sick, Grief and Acceptance, yearning for the Living Well. For a while, I found my place of peace and stability again; but as my other symptoms improved, the facial pain got worse. Any increase in my heart rate was a trigger, along with brushing my teeth, heat, cold, talking, vibration, wind and, of course, stress.

I came to understand very clearly why this was called the suicide disease. My husband and I went to the University of Pittsburgh Medical Center, where they treat many trigeminal neuralgia patients. They recommended radiating the nerve, essentially killing it, but that didn’t feel right to us.

I met with a brain surgeon recommended by my neurologist. After a lengthy interview he said, “I think you have a vein pressing against the nerve and I believe I can fix it with surgery.”

I waited a month before scheduling the surgery, which was successful. I was off pain medication in a year and, as a bonus, all my other symptoms improved as well.

Now, three years later, I am taking only two medications, one for IC and another to help control the dizziness of Meniere’s disease, another card added to my poker hand of chronic conditions.

I have a functioning brain and memory, as much as one could expect from a 66-year old! I have energy, more than I have had in decades. I don’t have global, widespread pain. After years on opioids I take no pain medication stronger than Tylenol.

My story begins like so many others, but for me it ends like a miracle, a gift. I didn’t expect to get so much better, and I don’t know what all helped me. As a student in the School of Whatever Works, I tried everything.

I write this story to offer hope to other struggling patients. There is always the possibility that even chronic conditions can improve over time, research can reveal new pathways to understanding and new treatments will be developed. The IC medication I am on today did not exist when I was first diagnosed. As evidenced by my surgery, cures are possible.

Time, good care and lifestyle changes can allow healing to occur. Make peace, but never give up hope.

12_7.jpgJoy H. Selak lives Austin, TX. with her husband. She is a patient advocate and co-author of “You Don’t LOOK Sick!” Living Well with Invisible Chronic Illness.”

National Pain Report invites other readers to share their stories with us.

Send them to editor@nationalpainreport.com

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

Authored by: Joy Selak, Columnist

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Kathryn

The “good doctor club” is the key. I have been dealing with diagnosed autoimmune diseases since I was a teen. 40 years later I have dealt with 3 such doctors, 2 of whom are retired. For the last 6 years I have dealt with a cascade of worsening problems like you write of. Most of the doctors I have dealt with have misdiagnosed, bungled, refused to communicate with each other, etc, etc, etc. I have been unable to work for 2 years now due to their mishandling of problems. I have encountered abysmal ignorance in one specialist who actually teaches his misinformation at a major university. I’ve been told several times I was not sick by one Dr. only to be told by another, on the same day, that I was seriously ill. I could fill pages with specific, documented, frightening examples of these bad Dr. experiences. .

In short, I cling to a diminishing hope of finding “a good doctor”. If you do, appreciate it for the very rare miracle that it is and think of the majority of us who search and search but never do.

Diane A

Reply to Dr. Rodrigues.
I had chronic pain always 5-6/10 nothing helped, did all the neurontin,lyrica, nsaids, narcotics, acupressure,puncture, spinal cord stimulator after limited improvement from external TENS. pain was caused from oestosarcoma tumor right distal femur pressing on arteries, nerves for a long period of time.. then the ensuing chemo and surgery resulting in an endoprosthetic femur/knee/partial tibia.
This caused many tissue adhesions It took 4 years and multiple MD’s to find one who wanted to try trigger point injections.. after 4-6 sessions of these with lidocaine and cortisone. the pain was much better. To the point that it is now only 2-3/10 in it’s constant state ans controlled by low dose norco ( about 5 mg 3 x a day with tyelenol ) and a couple otc Aleve..
Wish the word about Trigger point injections would get out there.. Really made a positive difference in my life.

I’m sad that so many are suffering in complex pain syndromes and the logical cause and solutions have been available, vetted, safe but overlooked. This Pain Report site is rampant with folks who are suffering but no one is offering any suggestions as to modalities to combat pain and restore wellness.

It is hard to believe that there is effective help. It’s true. I know the reasons why this therapy has been ignored but lets focus on the solution. (The naysayers will post to rebut this data)

Janet G. Travell and D. Simon, MD, who have a 2 volume set of books on Myofascial Pain and Dysfunction Therapy. Travell was an orthopedic doctor in the 1950s-60s. She et al realized that focused therapy at the joints was less successful that focusing the therapy on the muscles. Many physicians see pain issues as in joints or static structures; she understood that it is the muscles. She also discovered that treating the muscles would also alleviate a lot of movement disorders and pain syndromes. She noted that if the muscles were treated then the ligaments, nerves and circulatory dysfunctions would naturally resolve. Her therapy is called Trigger Point Injections. Over the years I have found other authors who have done a lot of work to clarify this disease and therapy, Edward S. Rachlin, MD., C. Chan Gunn, MD plus many others.

Trigger points injections are a type of myofascial release therapy that your Physical Therapist will know about. Myofascial tissue release therapy is on a spectrum from simple stretching, yoga, Pilates, hands-on manipulations, acupuncture, dry needling to finally Travell trigger point injections.

We need Trigger Points and Myofascial Pain and Dysfunction to be recognized, addressed and effectively treated. The longer this issues is neglected the more deeply “seeded” and harder to treat it will become. See my other post. Stephen S. Rodrigues, MD, Dallas, TX

I SUFFER FROM A LOT OF ILLNESSES. I HAVE OSEOPOROSIS, OSTEOARITHRITIS, FIBROMYALGIA,GOUT, COPD, SLEEP APNEA, EMPHYSEMA,DIABETES,DEPRESSION, ANXIETY,AND OTHER ILLNESSES. I JUST WANT TO ASK THESE PEOPLE A QUESTION.DO YOU HAVE MY BODY? NO YOU DO NOT. THEREFORE, HOW CAN YOU KNOW THE SEVERITY OF THE DEVASTATING PAIN THAT I SUFFER. YOU PEOPLE SAY YOU CAN SEE MY PAIN. HOW? THE ONLY WAY FOR ANYONE TO KNOW AND FEEL THIS AWFUL,DEVASTATING PAIN, IS TO HAVE IT THEMSELVES. I DO NOT WISH OR WANT ANYONE TO SUFFER AND HAVE TO DEAL WITH WHAT I DO EVERYDAY OF MY LIFE. THERE ARE DAYS WHEN I CANNOT GET OUT OF BED, THERE ARE DAYS AND I MEAN EVERYDAY I CRY WITH THIS DEVASTATION.WHY WOULD ANYONE EVEN CONSIDER WANTING TO TAKE OUR PAIN MEDICATION AWAY FROM US. GET REAL PEOPLE! YOU HAVE NO IDEA WHAT IT IS LIKE. WITHOUT ANYTHING FOR THIS PAIN THAT WE SUFFER ,THERE IS NO WAY WE COULD EVEN THINK OF GOING ON WITH OUR LIVES. SOME DAYS I CANNOT EVEN STAND FOR MY CLOTHING TO TOUCH MY BODY. THERE ARE DAYS ,THAT IT FEELS AS IF I AM ON FIRE, OR WALKING ON NAILS.THIS PAIN IS SO BAD AT TIMES, THAT I WILL HAVE CHILLS,AND OTHER DAYS IT FEELS AS IF I HAVE A TEMPERTURE.IT IS SO UNCOMFORTABLE. YOU CANNOT SIT, STAND, LIE DOWN, AND YOU ALSO HAVE SLEEP DEPRIVATION.IT IS SO INTENSE I HAVE CRIED AND I HAVE BEGGED AND PLEADED WITH GOD ABOUT THIS. I JUST HOPE THAT NO ONE AND I REALLY MEAN NO ONE HAS TO EXPERIENCE THIS AWFUL PAIN. MAY GOD BLESS EVERYONE!