Monday, June 28, 2010

Social Security Disability - Mastering the Red Tape

SSDI and Their Expert Witness

Make sure you doctor is documenting what you say in your medical record. My neuro of 25 years, put only, no changes. I developed a form, filled it out, reviewed it with him. He said, yes I know all this, but it is not new. I asked him if he would sign it and put it in my medical record. He did! Don't assume anything.

What the SSA wants to see is how illness affects your ability to function and with objective measurable criteria.

-What is your cognitive-neuro score? This is a grueling all day tests that measures
your cognitive deficit and is administered by a credentialed forensic specialist
-How does altered sleep interfere with your ability to copy with everyday things?
-How long does it take you to prepare for work?
-What is your life like at work?
-Is your work willing to make accommodations?
-Have you had to make adjustments to your work schedule in order to cope with the
pain and fatigue?
-What is your work record like, are you unable to make it many days, and if so, why?

The Social Security Administration's (SSA) own doctors said I should not do anything that requires repetitive long term motion of my upper extremities and hands, and that I should not stand or sit for prolonged periods. This was THEIR doctor. Yet in my denial letter they suggested I get a job as a "doll maker." Obviously the system is overloaded. Don't stop, file an appeal.

(Excerpt, please see copyright guideline)

The ALJ may request expert testimony from medical and vocational experts. These “experts” may or may not have firsthand knowledge of FM, CFID, or CMP. In my experience, finding a doctor who is aware of these conditions was difficult, so you can well imagine the knowledge base of the ALJ’s “expert witness.” The laws protect the claimant to some extent in that the ALJ must give more weight to the opinion of the claimant’s treating doctor than to the opinion resulting from a one-time medical exam requested by SSA or their team. However, the judge’s expert witnesses have more impact on the ALJ’s decision when the claimant’s physician has not adequately addressed and documented key issues in the claimant’s medical record. This is why it is so important to make sure your medical records reflect the continuing disabling effect of chronic pain.


Getting Turned Down—What Next? excerpt from “Approaching the System Systematically” (copyright rules apply – See copyright in the discussion topics)

Your denial letter will most likely suggest you do some specific type of simple, sedentary work. The SSA gets their suggestions from the Dictionary of Occupational Titles and their suggestion may have little or no relevance to your claim. In my case, their own doctor told them I shouldn’t do any type of work that required repetitive hand motion. When they then suggested I get a part-time job as a doll-maker, I was quite sure they hadn’t really looked at my case with genuine concern(By the way, I use a voice-activated program to prepare most of my writing, which takes a great deal of time, compared to direct transcription. It’s not conducive to steady employment, but the finished product, regardless of the overwhelming amount of time it takes to prepare, is rewarding in other ways.)

If you disagree with the decision, you can request a review, called an “appeal.” There are certain guidelines for filing the appeal, so be sure to verify information with the Social Security Administration.
-End excerpts

IF YOU ARE IN APPEAL, you need a good attorney. I hear over and over again from people who lose at this stage, they are not happy with their legal representation. Your attorney needs to understand what FM, CFID, CMP or other issues are and how they affect your ability to function. Educate them.

How do you make it through a day with FM, CFID or CMP? How many hours to you have to care for the unpredictability of it all. Day by day, moment by moment we are held hostage by our symptoms.

Explain this in a daily diary, buy a calendar at the $1 store and document symptoms, treatments, medications, and whether or not they work. Photo it and get it into your medical record and give a copy to your atty too. Let them see, make them see, what it is to walk a day in your shoes.

A close family member has MS. Even though she had a SSA qualified illness, her application for SSDI benefits were turned down. They based their decision not on her diagnosis but on her ability to function, or more sadly, the lack of documentation.

If you have brainfog, get that neurocognitive exam.

My doctors, FP and neurologist, had witnessed my steady decline and their opinion does count. They saw me holding on to work by my fingernails. I did not go down easily. I cut my hours, changed gears, until I had to face the grim reality. SSA sure isn't RN pay, but it gets us by. The sad thing is because I had cut my hours back the last 3 years of the 5 year look back, my SSDI is not as much as it would have been otherwise. And, because I didn't have any extra money, I let my long term disability insurance lapse. But, hey, can't cry over spilt mild, we don't get do overs. The majority of us have stumbled down this road, quite literally. The SSA does take stock in what your personal doctors have to say. Make sure they say it.

If you lose at this level, don't give up! They would like nothing better than to break your will. Remember, get your documentation in order, and consider hiring another attorney if yours is unfamiliar with our illnesses. Most work on commission and their fee is topped by the USA, finally something in our favor.

"When defeat comes, accept it as a signal that your plans are not sound, rebuild those plans, and set sail once more toward your coveted goal."
--Napoleon Hill

Social Security Application

Fibromyalgia Residual Function Questionnaire

Good article on SSA disability process.

Lamb hugs to all on their journey; it is a winding road, hold on tight for a rough ride. At a time when I suggest focusing away from pain, you will be focusing on pain, it is the nature of this beast, and necessary for you to win either on initial application or appeal.

There is an entire section in the book devoted to SSA filing, documentation, what to expect, etc. The book has many documentation tools throughout to help you explain your condition and needs, painting a picture for your physician to help in his assessment. Using the forms will also get the information in your medical record. Make sure you physician puts the help sheets in your record where it belongs. It will help him/her save time and validate to the powers that be, why the treatments and medications are given, etc., and explain what it is like to be in your body.

Tips:-Always be truthful
-Document everything, even your conversations with SSA (you won't remember, but
they will)
-Explain what it is like on your worst day (I recommend having someone help you fill
out the paper work during these periods, as most likely you will not be able to. It
is human to dismiss how bad things are on a bad day when you are having a good one.
This is what your life is like, explain it in no uncertain terms, it is difficult
for those who do not experience our pain and fatigue to know what it is like).

Sunday, June 27, 2010

Harvey Alter from the NIH supports/confirms the link between XMRV and CFS

Here is news that will knock your socks off. NIH expert, infection disease section, Harvey Alter supports/confirms the WPI link between XMRV and CFS. Now we wait for the published report. My two favorite words, Woo Hoo!

Follow the link to the article, Health Blog "Further Evidence of an XMRV-Chronic Fatigue Syndrome Connection?" written in The Wall Street Journal Health Blog on June 23, 2010.

Tuesday, June 22, 2010

A bit about my journey

I didn't know what was wrong with me when I walked out of the hospital that last day, I only knew that my brain was slipping away and my ability to critically think, and important attribute of a registered nurse, was being held hostage by the unbearable pain and extreme fatigue. Insomnia and sleep deprivation reached the boiling point; putting the patients I so loved to care for at potential risk. I am grateful that I made the decision to exit stage left before anyone was injured, as emotionally painful as that decision was.

I had cut my work hours back to part time in the mid to late 90’s, and even before that I stepped away from the bedside by becoming an educator, but you see even that did not help with the pain and dysfunction. I had suffered several on the job injuries, part of the job description, and with each surgery, it became more difficult to recover. I spend those last 5 years or so juggling life so I could maintain health benefits for myself and my husband.

After I threw in the towel, not knowing at the time why, I was eventually diagnosed with fibromyalgia (FM) then two years later, chronic fatigue syndrome (CFID/ME). I then learned on my own that I had chronic pain from myofascial trigger points, even though I had injections previously for this, I did not understand what this all really meant, after all, my experience was as a hospital nurse.

I had experienced poor healing, sleep disruption, irritable bowel syndrome, migraine headaches, Raynaud’s disease, irritable bladder, osteopenia, gastric emptying delay, pyelonephritis, mononeucliosis, erosive gastritis, duodenal ulcer, osteoarthritis, chronic meralgia paresthetica, periformis syndrome, thoracic outlet syndrome, degenerative disc disease, shingles, joint hypermobility, levido reticularis, SICCA syndrome, several shoulder surgeries, knee surgery, a hysterectomy, several sinus surgeries, carpal tunnel, a rectocele repair and a hemorrhoidectomy. All of these gigantic puzzle pieces where in the box, but no one seemed interested in seeing the big picture. Finally, of all people a rheumatologist referred me to a neurologist that knew what it all meant. FIBROMYALGIA. Later I saw a different rheumatologist that diagnosed the chronic fatigue syndrome, but I am still not sure to this day, what criteria he used to make the diagnosis. Later I experienced irits of both eyes, (thought by the eye doctor to be related to some autoimmune disease, not yet diagnosed), and I found out after much insistence that I have Hashimoto’s Thyroiditis (an autoimmune disorder of the thyroid).

Dealing with any one of these issues by themselves is enough, but throw them into one existing person, me, became difficult to deal with, and it’s not over yet, but I keep hacking away one at a time.

After leaving work, I dealt with a great deal of depression, as I was used to being able to conquer anything thrown my way, until now. I was blessed to have crossed paths in life with my once therapist and now co-author, Jeff Miller, PhD. He offered many tools to help me deal with disability. I hated that word, but learned that though it is an obstacle, it does not define who I am as a person. I started journaling as a way of working through the grieving process, and boy was this ever one. The book started as an entry in my journal, and blossomed from there. Please read my blog on “Never Giving Up.” Determination is the mother of invention, I don’t remember who said that, but it is so true. I was, and continue to be determined not to let my illnesses destroy my ability to enjoy life’s pleasures. For me, I had to redefine what that was.

Redefining our life’s goals isn’t always easy, especially in the face of pain and fatigue, but I choose to look at the contributions of others who accomplished much. Vincent Van Gogh suffered horrible pain with migraines, yet he is one of the greatest artists that ever lived. Christopher Reeve overcame what some would say were insurmountable obstacles, but he did. He often said he found himself after his accident, a profound statement that I agree with. I had a choice, see the glass as half empty or half full. Choosing the later has altered the course of my being.

Though I may never reach that bucket of gold, total physical, mental, emotional, and spiritual balance, at the end of that rainbow, I am learning it is about the trolley ride over it, absorbing all I see as I reach the pinnacle.

My greatest desire is that when I am gone, people will say…. “She never gave in, she trusted God, she maintained forward momentum, and she always strived to pay it forward.”

Lamb hugs to all, and to all a good day.

Tuesday, June 15, 2010

Cervicogenic Migraines and Myofascial Trigger Points

Migraine headaches co-exist in both fibromyalgia (FM) and chronic fatigue syndrome (CFID), and can be a great factor in decreasing our pain threshold. It is like every nerve ending we have is fresh, raw and exposed. One more insult has us ready to explode.

Though we still don’t know for sure what causes migraine, we are learning. Cervicogenic migraine is a migraine attack that is perpetuated or preceded by neck pain. For me, and I suspect many others, I can feel the golf ball starting to form on the right side of my neck at the base of my skull, and I can feel little pea size or smaller trigger points even up my scalp. (I do have significant cervical disease, but this is different, it is myofascial, in the muscle). Before long, a whole cascade of events begins and the once latent trigger points (those that can be felt but aren’t painful until pressure is applied) in my face develop into full blown active TrPs, ones that hurt and radiate pain seemingly without warning without even touching them. I can feel them with my fingers and when I apply pressure, this helps if I can get them to release. If treatment is successful, you can feel them relealse under your finger, and sometime can feel the tell tale local twitch response. Treating all of these TrPs can help with the attack. It is when I neglect treating them before this point that I am more likely to have this migraine, and the greater the neglect, usually the more intense the headache.

“A myofascial trigger point (TrP) is a self-sustaining, irritable area in the
muscle that can be felt as a nodule in a taut band. This irritated spot causes
the muscle to gradually shorten, interfering with the motion function of the
muscle and causing weakness and pain.” (Book excerpt)

Migraines alter my life, my ability to think rationally, and breakdown my defenses. My migraines always start behind my right eye, whether they start from weather changes, an oops with my diet, stress, or my myofascial TrP disease (which scientists now believe all fibromyalgia patients may have in addition to the body-wide centrally mediated tenderness). Usually, when my migraines switch to the left, I know it is on its way out. Rarely, but when the attack begins on the left, it isn’t as severe, nor does it last as long. Most of my refractory migraines are cervicogenic in nature, and I believe that is because of the number of neglected trigger points. This peripheral pain impulse to my brain, keeps it in perpetual wind-up, not allowing it to function as it should to send out natural endorphins and chemicals to counteract the original upset.

Books have been written regarding the myofascial trigger points and migraine. I am certainly not the first to write on the subject, and likely not to be the last.

• Mine, Celeste Cooper, Integrative Therapies for Fibromyalgia, Chronic Fatigue
Syndrome and Myofascial Pain
• Devin Starlanyl & Mary Copeland, Fibromyalgia & Chronic Myofascial Pain Syndrome
• Clair Davies, The Trigger Point Therapy Workbook
• Valarie DeLaune, Trigger Point Therapy for Headaches & Migraines
• Donna Finando, Trigger Point Self-Care Manual
• Hal Blatman, Art of Body Maintenance: The Winner’s Guide to Pain Relief

Migraine perpetuators related to myofascial trigger points

Bruxism is a fancy term for grinding teeth. This condition can aggravate facial trigger points, interfere with restorative sleep, cause teeth erosion, and, among other things, contribute to migraines. If you catch yourself grinding your teeth during the day, you most likely grind at night too, and according to my dentist, bruxism in sleep is four times more forceful. Is it any wonder that myofascial trigger points develop? Assistive devices, such as a nighttime mouth guard, can inhibit some of the pain associated with the disorder. Proper alignment, may abate the development of TMJ/TMD, but the force of bruxism can be a great contributor to the development and recurrence of TrPs in the face and jaw.

Temporomandibular dysfunction (TMD/TMJ), occurs when your chewing muscles are uncoordinated. This puts apposing muscles under undue stress and increases the occurrence of myofascial TrPs. Temporomandibular dysfunction is often associated with chronic muscular headaches and craniofacial pain. Pain can also extend to the ears, neck, and shoulders. Some people experience clicking and grinding noises during movement of the jaw, this limitation could be related to untreated or undertreated myofascial trigger points and pain that occurs anywhere there is muscle, including inside the mouth.

Poor posture and injury can also aggravate the neck and surrounding/supporting muscles, and trigger points in the neck can refer pain to the head and other places. (There are other topics here on my blog that explain how trigger points develop and cause pain and dysfunction).


First find the TrP in the taut band of muscle. It may not be easy to do initially, it takes practice. If you can find a good myofascial therapist to help you, such as a chiropractor or physical therapist that does active release therapy (ART), or a myofascial trigger point therapist, to help you, and self treatment in between, you may be able to lessen your headache frequency or intensity if they are cervicogenic.

Wishing you all a migraine free day, lamb hugs, Celeste

Helpful links for understanding migraine

Friday, June 11, 2010

Advocacy to the American Pain Foundation

Fellow advocates,

Thank you so much for the presentations from Dr. Gerwin and Dr. Clauw. As a patient with FM and CFS and chronic myofascial pain from myofascial trigger points, a RN and an author on the subject, I am trying to stay up with the latest information.

I would like to see the APF address the new proposed diagnostic criteria by Dr. Katz and I would like to see more information on the prevalance of myofascial trigger points in FM patients.

Ge HY, Wang Y, Danneskiold-Samsøe B, Graven-Nielsen T, Arendt-Nielsen L. The Predetermined Sites of Examination for Tender Points in Fibromyalgia Syndrome Are Frequently Associated With Myofascial Trigger Points. J Pain. 2009 Nov 13. [Epub ahead of print]

I certainly know that I have chronic myofascial pain (CMP) from myofascial trigger points as does my mentor Devin Starlanyl, who was mentored by Dr. David Simons. As I move about the various Facebook groups most of the pain described by fellow survivors can be attributed to myofascial trigger points. On investigation, after explaining proper technique for locating these knotted up pieces of muscle fiber in a taut band of muscle, people report back to me that they have them. This is significant anecdotal evidence. This certainly sheds light on understanding central sensitization from peripheral nerve input seen in FM patients with myofascial trigger points.

I am so hoping that Dr. Katz criteria is NOT approved until further investigation into the prevalence of myofasical trigger points in FM is further investigated. With this information, we will have objective measureable criterion. I question why this has not been addressed. Possibly because physicians get such little training in myofascial disease, yet it is the number one reason people have dysfunction and miss work. In some cases, like me, the dysfunction has bombarded my CNS and resulted in central sensitization. So many of us with FM also have migraine headaches, some of which can be explained by myofascial trigger points, and TMD/TMJ, also attributed to myofascial trigger points, and now the newer studies suggesting the great prevalence. Why are we missing this? Shouldn't this obvious connection be made?

I look forward to hearing what the APF has to say about this most important issue to me, to my health and the health of so many others. The treatments for FM are not the same as treatment for CMP from myofascial trigger points. Successful treatments, such as specific myofascial trigger point therapy, can certainly at least bring temporary relief to the patient, but insurance will not cover such treatment, most likely because we are missing the boat. This myofascial therapy can be done without subjecting the patient to invasive techniques such as steroid, dry needling, or lidocaine trigger point therapy, which must be limited and cannot reach all the offending active, latent, secondary and attachment TrPs.

Thank you in advance for your continued dedication to unraveling chronic pain disorders.

Please feel free to explore my website where you will find a link to my blog.


Author, Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection

Thursday, June 3, 2010

Are FM Tender Points really Myofasical Trigger Points?

Fibromyalgia is a central nervous system state of sensitization, whereas myofascial pain due to trigger points is a peripheral neuromuscular problem (outside the CNS, nerve to muscle). Trigger points are myofascial areas of knotted up muscle fibers in a taut band of muscle. They are EASILY felt unless behind bone or other muscles, or the band of muscle affected is too tight, in which case "specific myofascial therapy," such as TrP myotherapy, TrP injection, Frequency Specific Microcurrent, is necessary to loosen the muscle to locate the trigger point (TrP).

M = Myofascial
TrP = Trigger point, synonymous with
MTrP = Myofascial trigger point
FM = Fibromyalgia
CMP = Chronic myofascial pain

Myofascial TrPs are palpable, rendering an objective measurement of disease. And, thanks to the work of scientists dedicated to explaining myofascial trigger point (MTrPs) we know that there is irritability and pain associated with the excessive endplate noise at the MTrP, (Kuan, et. al, 2007) and that certain biochemicals are present. (Shah, et. al, 2007) When these TrPs are treated with pressure therapy, injections, or dry needling, the "twitch response" is visualized by the practitioner and felt by the patient. This has not been described in the “tender point model” of FM, or the present diagnostic criteria set by the American College of Rheumatology (ACR).

Let me interject the newer study “The Predetermined Sites of Examination for Tender Points in Fibromyalgia Syndrome Are Frequently Associated with Myofascial Trigger Points.” (Ge HY, et al. 2009), suggests that possibly all FM patients also have CMP (chronic myofascial pain from trigger points. This study and others like it brings question, "Were the ACR patients screened for the presence of myofascial trigger points?" "Did the examiners know enough about TrPs to know to look for them or that they cause significant pain, dysfunction and referral of symptoms?" "Did they know presence of these TrPs provides criterion that takes FM out of the subjective complaints only arena?" This is a question that I personally would like to see answered. What we know for certain right now is that FM, and CMP, can and often do co-exist in the same patient, yet paradoxically not all patients with myofascial trigger points have FM, they are two separate entities.

As I have described before, and backed by solid research, FM is a central sensitization problem brought on by a dysfunction of the HPA (hypothalamus-pituitary-adrenal) axis. Chronic myofascial trigger points and pain (CMP) is a peripheral nerve to muscle problem(Hong and Simons, 1998). FM, CFID, migraine, IBS, irritable bladder and several other common co-existing conditions that escape me right now, also have a strong central nervous system component. As an example, the pain of a cervicogenic migraine, is helped a great deal by myofasical therapy. (DeLaune, 2008). These patients may not have FM, but there is also a strong centralization issue in Migraine, whether they meet the current FM diagnostics or not.

A new application of ultrasound imaging and vibration soloelastography includes 2 dimensional greyscale and vibration sonoelastography imaging of a myofascial trigger point [in the upper trapezius] and specifically identifies MTrPs from surrounding tissue, more objective criteria. This new science will be a helpful tool to the clinician for evaluating palpable myofascial TrPs. In addition, the study also shows that as many as 85-93% of chronic pain patients seen in pain management clinics have myofascial trigger points (MTrPs). This does not mean that they all have FM, but if their TrPs are perpetual, meaning they are perpetuated by even a light breeze, and not chronic, meaning they are not responding to therapy, they certainly could have an undiagnosed FM component.

When any centralization disorder, like FM, co-exists with CMP from TrPs, the peripheral message of painful trigger points to the brain keeps the brain in a hypersensitive state," causing a “wind up” phenomenon and dysfunction of the HPA-axis (also seen in CFID/CFS/ME) is off and running. Think about the patient that has FM, CFID, CMP, migraine, IBS, and irritable bladder. You may be one, I am.

In disturbs me that so much misinformation is being disseminated, well intended, but could lead to a misdiagnosis and inappropriate treatment. It is this misinformation that causes unnecessary frustration to both the doctor and the patient.

"It's not about the rough ride, remembering life is like a safari. Sometimes I have to look for that, but I always find it, so I must be certain, it is always there for the taking." - Celeste

S. Sikdar, J.P. Shah, E. Gilliams et al. 2008. “Assessment of myofascial trigger points (MTrPs): A new application of ultrasound imaging and vibration soloelastography.” Arch Phys Med Rehab 89(11): 2041-2226.

T.S. Kuan, Y.L. Hsieh, S.M. Chen, J.T. Chen, W.C. Yen, C.Z. Hong. “Re: The myofascial trigger point region: correlation between the degree of irritability and the prevalence of endplate noise.” Am J Phys Med Rehabil. 2007 Dec;86(12):1033-4; author reply 1034.

J.P Shah, S. Parikh, J. Danoff, L.H.Gerber,” Re: The myofascial trigger point region: correlation between the degree of irritability and the prevalence of endplate noise.” Am J Phys Med Rehabil. 2007 Mar;86(3):183-9.

HY Ge , Y Wang, B. Danneskiold-Samsøe , et. Al., “The Predetermined Sites of Examination for Tender Points in Fibromyalgia Syndrome Are Frequently Associated With Myofascial Trigger Points.” Pain. 2009 Nov 13.

C. Z. Hong and D. G. Simons, “Pathophysiologic and electrophysiologic mechanisms of myofascial trigger points,” Archives of Physical Medicine and Rehabilitation 79, no. 7 (1998): 863–72.

D. M. Niddam, R. C. Chan, S. H. Lee, T. C. Yeh, and J. C. Hsieh, “Central representation of hyperalgesia from myofascial trigger point,” NeuroImage 39 (2008): 1299–1306.

D. G. Simons and S. Mense, “Diagnosis and therapy of myofascial trigger points,” Schmerz 17, no. 6 (2003): 419–24.

C. Z. Hong, “New Trends in myofascial pain syndrome,” Zhonghua Yi Xue Za Zhi (Taipei) 65, no. 11 (2002): 501–12.

D.G. Simons, J.Travell, and L. S. Simons, Myofascial Pain and Dysfunction: The Trigger Point Manual, 2nd ed. (Baltimore: Williams and Wilkins, 1999.)

V. DeLaune, Trigger Point Therapy for Headaches and Migraines: Your Self-Treatment Workbook for Pain Relief. (Oakland: New Harbinger, 2008.)

Tuesday, June 1, 2010

Does Your Doctor Have Wax in His Ears?

Does Your Doctor Have Wax in His Ears?

Is it any wonder that we have difficulty trusting the people we rely upon for help? We seek acknowledgement, not pity nor sympathy. As patients it is absolutely imperative that we listen to what our body tells us. We must continue to ask questions and get second opinions, or in my case, third. We can only rely upon ourselves to build the patient ratio of a trusting doctor-patient relationship, yet we must be willing to accept that despite our best endeavors, there are just some people who will not reciprocate.

After 14 months of repeated complaints that my life altering fatigue wasn’t my “usual” fatigue my general practitioner ran a TSH, thyroid stimulating hormone,
to check my thyroid status. It was low. When I visited another specialist and I told him about these results. He told me it was nothing. I said, “it is something, I am telling you, I can’t find the quality of life I am used to having, (which even at that pretty much sucked, but I was learning to cope in positive ways). THIS IS DIFFERENT!” He patted my shoulder and said, “You mustn’t complain so much and learn to be more positive.” I was mortified that he would think anyone with FM and CFID would complain just to hear their selves talk.

Finally, my family doctor order a test called a thyroid uptake scan, which resulted in “extremely low iodine uptake.” This indicated my thyroid was barely functioning, despite what my low TSH from the pituitary was saying. Let me interject here that the HPA (hypothalamus-Pituitary-Adrenal) axis is thought to be altered in the FM patient, and though the alteration in CFID is different, issues with the HPA-axis and autonomic nervous system has also been seen. Hence, a Thyroid ultra sound, which was negative for tumors. My GP’s nurse called with the ultrasound results and told me no follow up was necessary. But, I knew how I felt and I knew further investigation was necessary, I was contemplating going “all in.” Life to me at that point was worth nothing, and I am a woman with true grit! I made an appointment with an endocrinologist who told me “30% of the population is fatigued.” I asked him if he knew anything about FM or CFID and he said the expected, “no.” I explained the HPA axis research, which didn’t seem to impress him much, but he did order a test to check for Hashimoto’s Thyroiditis with a comment, “I doubt this is what it is, but because you have a family history, we will get it. No surprise to anyone of us at this point, right? It was positive. Yes, Hashimoto’s and a LOW TSH, not the usual, but FM and CFID are not the usual, and I have both.

We must not fall prey to complacency by our healthcare providers. Everything cannot be blamed on FM or CFID. It muddies the diagnostic waters, no doubt, and other disorders can certainly aggravate or intensify a flare, but we live with it every day, and when something is different, it is different. Our complaints must not fall on deaf ears. If your doctor has wax in his/hers and you cannot “flush them out,” I implore you to seek another one who wants to have a doctor-patient relationship, one who sees you as a person and not just a bundle of complaints. We shouldn’t have to silently scream, “Hey you, remember me over hear in the corner, you know the one, your patient.”

Trust is a two-way street. You know when your car is not performing as it usually does. Your mechanic can even put it on a computer to diagnose the problem, but if they don’t know how to fix it, the mechanic is of little use. The same hold true for any health care provider. Education needs abound for fibromyalgia, chronic fatigue immunodysfunction and chronic myofascial pain from unrelenting myofascial trigger points, but you want a doctor with good listening skills, one that trusts that you, the patient, the one who knows their body best. Having a doctor that respects what you have to offer at minimum will improve your outcome and it could save your life.

(See topic “Tips for Communicating with Your Doctor)



“A good listener is not only popular everywhere, but after a while he gets to know something.”
~Wilson Mizner

 Assume a position of comfort
 Establish eye contact
 Listen without interrupting
 Show attention with nonverbal cues, such as nodding
 Allow expression of feelings
 Make sure your concerns are heard
 Pay attention to clues, like your doctor looking distracted, wait and come back when he/she has finished their thought (I am horrible at this, because I am afraid I will forget, but if the doctor’s mind is on something else, he/she isn’t ready to listen)
 Take a list and put your priority at the top, you might not have time to cover it all in one setting
 Make it clear that you want the doctor as a TEAM member in your healthcare
 Give the doctor credit for working with the information you have given
 If the doctor isn’t listening, GET A NEW ONE

(Also see, “Does Your Doctor Have Wax in His Ears?”)

Celeste's Website

Celeste's Website
Click on the picture