VOTE for the AFFIRMATION Contest! We need YOU!

A big “THANK YOU” goes to each of you who took the time to submit your personal affirmation.  Reading how each of you focuses on positive ways of dealing with hardship is inspiring. We never know how far our words go or how many hearts they reach, to know you are an instrument in that healing has been a personal gift.

Now, on the next step, please help us choose the winner of the Broken Body, Wounded Spirit: Balancing the See Saw of Chronic Pain affirmation contest. 

Voting ends at midnight March 31st.

Where to vote:

You can vote n the comments here on the blog.

On Facebook 

Linked –In Poll “What is your favorite affirmation?”

• National Fibromyalgia and Chronic Pain Life Magazine
• Pain Sufferers Speak
• FibroMadness
• Patient Advocate Foundation
• Power of Pain
• FibroLIFE
• Chronic Pain Support

How to Vote

In the comments area simply vote for #1, #2, or #3, there are not in any particular order.  

#1 “Bring on the day so I can make the most of the moments.
      Some may hurt but others will take your breath away. “© 

#2 "Be kind to yourself. Respect who you are.
      Walk in the light of your fearlessness. "© 

#3  “Step by step, I'm following my path towards optimal health
       with grace, gratitude and grit."©

The Prize

The author of the winning affirmation receives:

• A copy of Broken Body, Wounded Spirit: Balancing the See Saw of Chronic Pain,              FALL Devotions.
• Their affirmation with their chosen signature line in print in the next edition, Broken Body, Wounded Spirit: Balancing the See Saw of Chronic Pain, SUMMER Devotions.

Important note: These affirmations are the original words of the author and are not to be published without their signature, which has been omitted here solely for the purpose of contest anonymity.  All three authors will be identified when the contest is completed so credit can be given.

Thank you again for your devotion to the contest.  Though we may not always reach our full potential because of pain, our progressive work to achieve a worthy goal is something we command, it gives of power, when things seem out of control. Learning the see opportunity from adversity by writing personal affirmation is what fills the gap often created by the struggles in our painful life. 

In healing and hope, Celeste

You can find tips for writing affirmations at: https://thesethree.com/Key_to_Affirmations.html

What the heck is a syndrome?

A syndrome is a collection of symptoms that remains the same throughout a particular patient group, but the cause is unknown. These might include fibromyalgia syndrome, chronic fatigue syndrome, Cushing’s syndrome, irritable bowel syndrome, AIDS, Asperser’s syndrome, Barrett’s syndrome, carpal tunnel syndrome, leaky gut syndrome,  paradoxical orthostatic tachycardia syndrome, Sjögren’s syndrome, Ehlers-Danlos Syndrome, urethral syndrome,  restless leg syndrome, Raynaud's syndrome, CREST Syndrome (a form of Scleroderma), complex regional pain syndrome, and many more. You may not realize it, but even rheumatoid arthritis is considered a syndrome. 

Some disorders are confusingly called diseases, when they are actually syndromes.  Diseases generally have a known cause. And syndromes, even when we know something about them are still syndromes. For instance, research shows there is an excessive release of acetylcholine at the neuromuscular (nerve to muscle) junction of a myofascial trigger point, but myofascial pain syndrome is still considered a syndrome. This is because we don’t know what causes the excessive release of acetylcholine, a neurotransmitter, the chemical messenger between the body and the brain.

When invisible disorders have no biological marker, a test that says you specifically have the disorder/syndrome, and sometimes when they do, there is always the doubting Thomas.  We think these folks mission in life is to prey on our psyche.  Why is this? Pretty much the answer is simple; they don’t experience our pain, lack of restorative sleep, life altering fatigue, severe chronic headache, a bladder that is constantly on fire, constantly cold extremities, or feel like everything they touch is barb wire, just to mention a few symptoms of invisible illnesses. Syndromes are not seen as real because some people operate on the assumption that if you can’t see it, it isn't so, even some healthcare providers migraines were once attributed to a woman’s frenzied inability to cope with stress.

Newer research into genetic markers will plow under the misconceptions of those who do not share our syndrome. In the mean time, it is up to us to support those who support the research.  Orphan disorders of all sorts face the same challenges.

In healing and hope, Celeste Cooper, RN author, patient, activist

All blogs, posts and answers are not meant to replace medical advice.  www.thesethree.com

Headache & Migraine

Headache & Migraine

LiRIS, Disability Delays, New Treatments Approved, InterStim vs. PTNS, Valentines Day Ideas for IC, Clinical Trials & More

LiRIS, Disability Delays, New Treatments Approved, InterStim vs. PTNS, Valentines Day Ideas for IC, Clinical Trials & More

February 2013 - ICN E-Newsletter, terminates LiRIS clinical trial,  FDA expanded the approved use of Botox, The U.S. FDA has approved [OTC} Oxytrol for Women,... cost of sacral nerve stimulation (i.e InterStim) with the cost of PTNS, … chronic pelvic pain and pre-term delivery …post menopausal women- recurring UTI's with decline in estrogen was making vaginal and vulvar skin more susceptible to infection. 

Biological marker for fibromyalgia is challenged- No surprise

A unique immunological pattern has been found in fibromyalgia in a study done by Behm, et al, 2012. Full article in pdf here.

"The cytokine responses to mitogenic activators of PBMC isolated from patients with FM were significantly lower than those of healthy individuals, implying that cell-mediated immunity is impaired in FM patients. This novel cytokine assay reveals unique and valuable immunologic traits, which, when combined with clinical patterns, can offer a diagnostic methodology in FM."

Bruce Gillis, MD, and member of the clinical faculty at the University of Illinois, Chicago College of Medicine, has taken the results of this study of which he was a part, to another level. He has developed a blood analysis, the FM/a® Test, which is capable of diagnosing FM. (Dr Gillis is the founder of the Epic Genetics, where the blood test is conducted.) 

As I read the study and the following publications, I braced for what I knew would follow.

Questions arise over new diagnostic test for fibromyalgia
http://www.foxnews.com/health/2013/02/26/questions-arise-over-new-diagnostic-test-for-fibromyalgia/#ixzz2My2kMd9N

As with all good science comes challenge, as it should. I agree with Dr Daniel Clauw that replicated studies are necessary.  Dr. Gillis may or may not have jumped the gun on objective blood test, but the evidence is significant.  Though this is the first study of its kind, it certainly is not the first study suggesting that diminished cytokine response has been implicated in fibromyalgia. Consistent cytokine abnormalities, though none as significant as seen in this study, suggest an immunological factor. This would explain why fibromyalgia clusters with other neuro-endocrine-immunologic disorders.  

As I have written, yet to be published, this is the beginning of some very interesting research.  Investigations that will move us down the right path.  It does not negate the involvement of the HPA axis in FM.  My opinion is that neuroimmunologic science suggests it is part of it.  When the hypothalamus-pituitary axis is dysfunctional, as seen in repeated studies of FM, it affects the neuro-endocrine and immunologic responses, and involvement of the autonomic nervous system.  We know the central nervous system is bombarded with chronic pain impulses from the periphery (from conditions such as  myofascial pain syndrome, known muscle abnormalities, or from cervical nerve root impingement another pain impulse aggravator suggested in FM). The fibromyalgia brain does not respond the same way when compared to other chronic pain disorders.  Many people with chronic pain share centralization, which is amplification of pain, but do not have any of the comorbid disorders associated with fibromyalgia. That is where the difference lies, that is the defining factor of HPA dysfunction resulting in neuro-endocrine and immunologic responses. 

Dr Frederick Wolfe suggests that these same results might be found in other illnesses.  This bears mentioning and I agree.  We need more research.  However, this study does suggest that fibromyalgia patients do have an immune dysfunction, whether it shares the same immune dysfunction with other illnesses is up for debate. I believe we need to focus on this, it proves that fibromyalgia is a biological disorder." Dr. Clauw and Dr. Robert Bennett, Dr. Roland Staud, and many others who have studied fibromyalgia diligently for many years all agree that fibromyalgia is NOT a psychological disorder.

Dr. Dan Wallace, a clinical professor of medicine at the David Geffen School of Medicine at UCLA based at Cedars-Sinai Medical Center,  says,

“The elegantly designed study by Dr. Gillis and his co-investigators represents a milestone on the path our group charted 25 years ago when we first hypothesized that cytokines play a role in fibromyalgia. It is hoped that this and future work sponsored by EpicGenetics will lead to a greater understanding of how the immune system, fatigue, sleep disorders, chronic stress and pain interact in patients with fibromyalgia and related disorders.”

Here is the hope in this message.   I feel optimistic that this biological marker will prove itsself because of the significant results between the FM and the healthy control group in the study. Fibromyalgia can no longer be seen as a psychosomatic disorder.  We will not have to be concerned about an ICD classification, or how fibromyalgia could be interpreted by the APA (American Psychiatric Association) Diagnostic and Statistical Manual of Mental Disorders, DSM-5. (See Who is the WHO, and Why does it Matter to You?).   Why is this important? Because these classifications are used to track data, ultimately determine treatment/referrals, and insurance reimbursement.

Fibromyalgia is now recognized in the Social Security Administration Blue Book, “Listing of Impairments,” and having a biological marker, whether specific to fibromyalgia or not, is a really big deal for the lives of many fibromyalgia patients whose symptoms are so severe they are no longer able to work. 

Yes, a glorious storm is brewing.  I am jubilant, even giddy, because, without adversity there is no opportunity.” Questions such as those proposed and those yet to come deserve merit, it means we will see more target rich research.  We will continue on in our current treatment plan, just as those with other syndromes, such as rheumatoid arthritis, systemic lupus erythematosus, and many others for which we have no cure.  The test may be cost prohibitive and maybe we should exercise patience until replicated and larger studies are implemented. If it bears out, then insurance companies should not deny reimbursement. But until then, this research and the test developed by Dr. Gillis is a really BIG deal, researchers have been working on a biological marker, have felt it was around the corner and the corridor of light could be staring us straight in the face, there is hope.

In healing and hope, Celeste

For more information on the test
www.thefmtest.com
www.epicgtx.com

All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.  For more information about the author see http://TheseThree.com

Resources:

Alonso-Blanco C, Fernández-de-las-Peñas C, Morales-Cabezas M, Zarco-Moreno P, Ge HY, Florez-García M. Multiple active myofascial trigger point reproduce the overall spontaneous pain pattern in women with fibromyalgia and are related to widespread mechanical hypersensitivity. Clin J Pain. 2011 Jun;27(5):405-13.

Behm FG, Gavin IM, Karpenko O, Lindgren V, Gaitonde S, Gashkoff PA, Gillis BS. Unique immunologic patterns in fibromyalgia. BMC Clin Pathol. 2012 Dec 17;12(1):25. doi: 10.1186/1472-6890-12-25.

Bennett RM, Goldenberg DL. 2011. Fibromyalgia, myofascial pain, tender points and trigger points: splitting or lumping? Arthritis Res Ther. 2011 Jun 30;13(3):117.

Caro XJ, Winter EF, Dumas AJ., “A subset of fibromyalgia patients have findings suggestive of chronic inflammatory demyelinating polyneuropathy and appear to respond to IVIg,” Rheumatology 47, no. 2 (2008): 208–11.

Fibromyalgia and Chronic Pain Life, Cover article, Mar/April 2013
http://www.joomag.com/magazine/fibromyalgia-chronic-pain-life-mar-apr-2013-i/0674007001362475699

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. 2010 Jul;11(7):644-51. Epub 2009 Nov 14.

Geiss A, Rohleder N, Anton F. Evidence for an association between an enhanced reactivity of interleukin-6 levels and reduced glucocorticoid sensitivity in patients with fibromyalgia. Psychoneuroendocrinology. 2011 Oct 13. [Epub ahead of print]

Gerdle B, Forsgren MF, Bengtsson A et al. 2013. Decreased muscle concentrations of ATP and PCR in the quadriceps muscle of fibromyalgia patients – A (31) P-MRS study. Eur J Pain. [Jan 30 Epub ahead of print]. [Once again, what about looking at knotted up pieces of muscle fiber, called trigger points/MTrPs, which have histological changes? Cc]

Holman AJ. Positional cervical spinal cord compression and fibromyalgia: a novel comorbidity with important diagnostic and treatment implications. J Pain. 2008 Jul;9(7):613-22. doi: 10.1016/j.jpain.2008.01.339. Epub 2008 May 22.

Kadetoff D, Lampa J, Westman M, Andersson M, Kosek E. Evidence of central inflammation in fibromyalgia –Increased cerebrospinal fluid interleukin-8 levels.  J Neuroimmunol. 2011 Nov 27.

Macedo, J.A., Hesse, J., Turner, J.D., Ammerlaan, W., Gierens, A., Hellhammer, D.H., Muller, C.P. (2007, Aug). Adhesion molecules and cytokine expression in fibromyalgia patients: increased L-selectin on monocytes and neutrophils. J Neuroimmunol., 188(1-2), pp. 159-166.

Sorenson M, Jason L, Lerch A, Porter N, Peterson J,  and Mathews H, "The Production of Interleukin-8 is Increased in Plasma and Peripheral Blood Mononuclear Cells of Patients with Fatigue," Neuroscience & Medicine, Vol. 3 No. 1, 2012, pp. 47-53.

Light AR, Bateman L, Jo D, Hughen RW, Vanhaitsma TA, White AT, Light KC. J Intern Med. 2011 May 26. doi: 10.1111/j.1365-2796.2011.02405.x. [Epub ahead of print] 

Srikuea R, Symons TB, Long DE, Lee JD, Shang Y, Chomentowski PJ, Yu G, Crofford LJ, Peterson CA. Fibromyalgia is associated with altered skeletal muscle characteristics which may contribute to post-exertional fatigue in post-menopausal women. Arthritis Rheum. 2012 Nov 1. 

Pelvic Pain, Bladder Disorders, Prostate Problems, Fibromyalgia, Chronic Fatigue Syndrome, and Other Female and Male Related troubles: Is it more than co-incidence?

The muscles in the pelvic girdle are what keep our organs from falling to the floor. These muscles make up the perineum, the urogenital triangle, and the anal triangle. They support the rectum, the vagina/penis, and the urethra, but they may not be the only muscles involved in your pain and dysfunction.

Causes

Pelvic pain can be from many causes such as, vulvodynia, irritable bladder or interstitial cystitis, infection, vaginal atrophy, prostate problems/pain, testicular and or pain in the penis, pain in the urethra (where your urine comes out), rectal pain, ovarian cysts, ectopic pregnancy, neuralgia, endometriosis, inflammatory bowel diseases, irritable bowel syndrome, diverticulitis, and myofascial trigger points (MTrPs), but for this blog we are looking specifically at the bladder and the perineum (area of the urethra, penis, vagina, and rectum).

Myofascial trigger points have been identified as the greatest aggravator of chronic pelvic pain, and pain is not the only symptom. Pelvic floor problems can also cause a decrease in urine flow in men and women, erectile dysfunction, urinary retention (setting the stage for infection), urgency (always feeling like you have to urinate), and constipation.

For more on myofascial trigger points and myofascial pain see “Myofascial Pain” at my website and
 my blog: Points That Need More Than Pondering: Defining Myofascial Trigger Points


Offending trigger points

Myofascial trigger points in adductor magnus (thigh), or internal oblique (abdomen), are capable of causing bladder pain and frequency, and MTrPs in the adductor magnus can cause a host of referred pain to groin and inner thigh, pelvic and pubic bones, rectum and vagina and can cause menstrual cramping (as can MTrPs in the rectus abdominus, abdomen), and trigger points in the internal oblique can also cause bladder difficulties. The muscles of the pelvis, and the multi-layered muscles of the pelvic floor can become tight, unforgiving and short due to MTrPs. Myofascial trigger points in pelvic related muscles can refer pain to the urethra, rectum, coccyx, or the crease of the buttocks.

This is speaking in generalities, but it’s important to understand that the source of your pain can be close by or well away from pelvis itself.  Treating MTrPs, whether active (painful without touching) or latent (only painful with touched) that refer pain to a specific region is just as important as treating those directly relatable. Often times, those who claim to know myofascial trigger points do not understand the complexity, this includes physicians, physical therapists, and body workers.


Chronic myofascial pain in fibromyalgia, chronic fatigue syndrome, and pelvic dysfunction

Myofascial pain syndrome often co-exists in fibromyalgia, and has been identified in some chronic fatigue syndrome (ME/CFS) patients, chronic pelvic and bowel disorders.  Myofascial trigger points are a peripheral nerve to muscle problem that lends to centralized (amplified) pain in fibromyalgia, interstitial cystitis, bladder difficulties, ME/CFS, IBS, and other overlapping conditions.  This hypersensitive state is also present in these disorders. Ignoring the obvious bloodies the diagnostic waters and most importantly delays appropriate treatments and leads to flawed research.


Therapies

It is important to identify perpetuating factors, such as, co-existing hip problems, piriformis syndrome, pudendal neuralgia, low back or sacroiliac joint dysfunction, and other overlapping conditions, bringing them under control when possible. Pay close attention to aggravating factors such as, sitting too long or on hard surfaces and chairs that can’t be adjusted to your body type, over activity, infection, poor posture, wearing pants that are too tight, consuming offending foods, etc.

There are a variety of therapies to help you, including intravaginal and pelvic floor trigger point injections, external and internal massage of the perineum and in women the vagina, biofeedback, bladder retraining, transcutaneous electrical nerve stimulation (TENS), tennis ball therapy (as discussed in our book),
acupuncture, dietary changes, over-the-counter probiotics for the bladder, stretching movements, topical analgesics (such as oragel), oral analgesics, and of course specific myofascial therapy by a trained specialist. Sometimes, all are necessary.

Seldom are doctors well informed about myofascial pain s and trigger points, so I am a firm believer that women should see a urogynecologist, that men should see a urologist and in both cases, the physician should understand the role of the myofascial in chronic pelvic pain.  The same is true for the physical therapist. Why? Those who do not understand the role of trigger points chronic pelvic pain and dysfunction may suggest traditional therapies, such as, Kegel exercise, which can worsen your symptoms, and when co-existing conditions such as piriformis syndrome, spinal disease, IBS, etc. are involved; a host of referral patterns are involved.  This is why identifying ALL your pain patterns (whether you feel a trigger point there or not) is important information for your specially trained healthcare provider.

Always discuss your symptoms with your doctor to make sure other causes are ruled out. If your pain and dysfunction is not found to be from another source, please look for those myofascial trigger points and a specialized therapist, they are treatable.

Resources for you:

IC and Irritable bladder
Blatman Pain Clinic
What Your OB/GYN Should Know About FMS and CMP by Devin J. Starlanyl
Pelvic Floor Myofascial Trigger Points: Manual Therapy for Interstitial Cystitis and the Urgency-Frequency Syndrome by Jerome Weiss
Fibro Care Center
National Association of Myofascial Trigger Point Therapists
ICA – Physical Therapy
ICA – Pelvic Floor Dysfunction
International Myopain Society
IC Network


(Signature line appended, March 2018)

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

http://www.CelesteCooper.com

~ • ~ • ~ • ~ • ~ • ~

Learn more about Celeste’s books here. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others.

All blogs and comments are based on the author's opinions and are not meant to replace medical advice.  

Walk a mile in my shoes: : The FDA and opioid labeling and restrictions, where does the problem really reside?

It is important to set atop the sky scraper, looking down on both sides of the building, weighing concerns in either direction, with the wind or against it.  I have deliberated over the power of addiction from any source, whether it be food, drugs, gambling, smoking, video games, shopping, sex, alcohol.  As I look into the wind and away from it, I question, “Is addiction a behavioral choice or an illness?” “Does restricting opioid medication from chronic pain patients reduce risk or increase it?”

Pain trumps all other basic functions. We are facing a critical turning point in our culture, and the consequence of wrong choices could be devastating. Why aren't we concerned with pain related deaths in this country? Could it be because we are afraid to admit our system is failing?  Will banning or limiting opioids increase the epidemic of untreated, pain? Does the potential for addiction outweigh the risks of not treating pain?

Addiction is the illness not the substance or behavior that feeds it. Have we stopped selling alcohol even though we know it has the potential for abuse and can kill instantly or slowly over a period of time?  Aren't programs like Alcoholic Anonymous a better answer? Is banning certain foods going to stop the obesity epidemic?  Do we treat addictions to gambling, smoking, video games, shopping, or sex by making it illegal to participate in any of these activities? As I sit on this grandiose pentacle, I realize to restrict the use of opioids as a choice in management of chronic pain is not the answer. Relieving pain is necessary; the use of alcohol, playing video games, etc is not. That does not mean I am in favor of government regulation, it means I am in favor of protecting our freedoms to choose how to relieve our pain.

Gaining favor as an alternative to opioids is antidepressants or anti-convulsants which we know create suicidal ideation in some patients, and can cause diabetes and a host of other serious medical problems.  These medications, in the medicine cabinet of a great many homes across America, have the potential for abuse. But why would we deprive patients who need them to function on a daily basis or prevent a very serious seizure disorder? Then I question, why these would be prescribed for pain when many patients report they are only minimally helpful, if at all, or that they come with a laundry list of interactions and side effects, when we already have effective pain medication?  Here we are atop the skyscraper once again.

I ask each person to relive their experience with pain and imagine it on a continual basis with no interventions possible.  Then I ask, “How long could you endure this pain before wanting to end it all?”  Is there any doubt you would be emotionally distraught?  Many pain patients feel alone and abandoned, because they are. Should we not address the emotional, mental, and spiritual affects of chronic pain, and provide education on how to use opioid medications safely and effectively?

We are missing the core problem of any addiction, poor access to mental health programs, lack of funding, and cultural attitudes. I would argue that the epidemic is not the use of opioids to treat chronic pain; the problem resides in our perception.   The days of using words like crazy or addict in a demeaning way should be long gone. The social injustice of ignoring those in need of professional council is the real epidemic. 

Those who take opioid pain medication to improve their activities of daily life and use them responsibly should not be vilified, and neither should those fewer people with a genetic tendency toward addiction. We must ask, before we make the decision to stand into the wind or away from it, choose one side of the building or the other, “Is it fair to deny a basic human right to have our pain treated by restricting access to medications that will help?” Addiction is not a moral collapse, it is a disease, and isn't addiction best treated by professionals rather than withholding the tool of addiction? Can we withhold food, sex, video games, alcohol, tobacco, gambling from everyone, and will that really solve the problem? History tells us from our experience with prohibition, that it will not.

Have we turned into machines worried about numbers rather than human beings? I hope not.