Undiagnosed Chronic muscle pain

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Pears1234
New Member


Date Joined Oct 2017
Total Posts : 1
   Posted 10/5/2017 6:22 AM (GMT -6)   
My sister has been suffering from severe muscle pain, primarily in her legs, arms and abdomin, for the past 4 years. It is getting progressively worse, with her being unable to do day to day activities. She has seen countless doctors, physios, had MRIs of her spine, steroid injections into her lumbar spine and hip and no one can shed any light or provide any relief from her constant pain.

Anyone suffering from similar symptoms or know of any alternative treatments for severe muscle pain?

Thanks in advance for any advice!

From one helpless sister

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14992
   Posted 10/5/2017 8:03 AM (GMT -6)   
Pears, welcome to the forum. My thoughts are since she has had so much testing & seen by so many drs, she should consider getting seen at a teaching hospital/university. Often people will do this when our main stream drs cannot come up with a proper diagnosis. You can do a google search for a location nearest to her & call them to find what is needed to get her seen. She will for sure need a referral & if they will accept her insurance.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

(Seashell)
Veteran Member


Date Joined Dec 2012
Total Posts : 664
   Posted 10/5/2017 12:53 PM (GMT -6)   
Especially given that your sister has had epidural corticosteroid injections, there raises the possibility of secondary adrenal insufficiency as a source of widespread body muscle and joint pain.

Secondary adrenal insufficiency is not on thr radar of most physicians. People often struggle for years traversing from MD to MD before being accurately diagnosed. An endocrinologist with pituitary speciality is a necessary resource. This can be a complex diagnosis.

The Pituitary Network Association is a credible resource center. www.pituitary.org

So, too, the National Adrenal Disease Association.

Cortisol is produced by the adrenal glands regulated by a negative feedback loop with the pituitary gland. Cortisol is a life essential hormone (chemical messenger). Cortisol is needed by every cell in the body. As such, low cortisol due to adrenal insufficiency has symptoms that span a broad spectrum. Different organs and body systems metabolize cortisol at different rates - and this varies from person to person, depending on their natural high and low energy demands. Ex. A person who is athletically inclined may show more muscle and joint pain; a person who is cerebrally inclined and analytical may show more cognitive symptoms.

A universal symptom common to all suffers of adrenal inadequacy is the symptom of pronounced and diffuse muscle and joint pain. I described my body experience as total body pain. Every fiber of my being ached, a deep ache. Cortisol is the body’s principal anti-inflammatory agent. Low cortisol secretion = High systemic inflammation of soft/connective tissue, muscle, and bone = profound and diffuse body pain. Mm

Symptoms of secondary AI: Diffuse and severe muscle and bone pain; nausea, vomiting and generally queasy gastrointestinal System, low appetite; low blood oressure, vertigo/ dizziness when changing body positions as in sit to stand or lying down to sitting or standing; orthodratif low blood pressure; brain fog, decreased higher level thinking and executive thought processes; sensitivity to lights and sounds and touch; profound fatigue, not relieved by rest; insomnia, interrupted sleep.

Secondary adrenal insufficiency develops slowly over the span of months and years. Symptoms tend to wax and wane as the pituitary gland does it’s best to compensate. It is common for a person with developing secondary adrenal insufficiency to be able to function fairly well on a given day, only to find that he/she is depleted the following day and seemingly unable to do much more than basic/simple tasks. This pattern of functioning one day followed by a day where the person is almost bedridden is a common thread as the disorder progresses. On a day that a person is able to function the body’s cortisol deserves are expended and depleted by that day’s tasks and engagements. The “tank is empty” so to speak the following day. And the person lies apathetically, often to he frustration of friends/family members.

I wanted to compose a thorough profile of adrenal insufficiency because your sister’s profile of seeking multiple physician consultations over years without a fruitful diagnosis is a common thead of those eventually diagnosed with AI. A recent clinical study found that the median timeframe for assigning an accurate diagnosis is 7 years. Seven years of futile physician consultations and futile diagnostic testing. Seven years where a person is summarily dismissed by one MD after another. Seven years of anguish and a deteriorated quality of life. Adrenal insufficiency is simply not on the radar of the average physician. It is imperative that a person suspecting adrenal insufficiency can advocate on his/her own behalf to seek an accurate and timely diagnosis.

Best wishes,
Karen
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Post Edited ((Seashell)) : 10/5/2017 4:41:18 PM (GMT-6)


Ljm2014
Veteran Member


Date Joined May 2014
Total Posts : 2055
   Posted 10/5/2017 5:02 PM (GMT -6)   
Karen,

Do you know the treatment for the adrenal issues?

I have symptoms of it, but also have fibro..seems like symptoms are similar..?

Lj

(Seashell)
Veteran Member


Date Joined Dec 2012
Total Posts : 664
   Posted 10/5/2017 9:02 PM (GMT -6)   
Ljm:
Always keep in mind that fibromyalgia is a condition assigned to an individual on a basis of exclusion.

That is, a “diagnosis” of fibromyalgia is made after a physician has ruled out other identified diagnoses. I use the word diagnosis in quotation marks in my referring to fibromyalgia because oft is the case that fibromyalgia is wrongly ascribed. Fibromyalgia is less a specific condition than it is a constellation of symptoms - symptoms that are similar to and overlap many other known conditions. The inherent danger in being diagnosed with fibromyalgia is that the treating physicians have assigned the diagnosis by excluding known conditions but have failed in conducting a more thorough differential diagnosis.

My endocrinologist has shared with me that almost all of the women she treats for adrenal insufficiency have a prior diagnosis (and incorrect diagnosis) of fibromyalgia. Fibromyalgia was assigned incorrectly. Continuing to deteriorate over months and years, these women finally shuffle into her office. Women who have been repeatedly told that their muscle/joint pain, cognitive fog, profound fatigue, et al was myofascial hypersensitivity. Any patient that walks into my endcrinologist’s office with a history of fibromyalgia and / or a psychological disorder (obsessive compulsive disorder, eating disorder, social anxiety disorder, and more) is given a full pituitary-adrenal axis (HPA) work-up. Bottom Line: Fibromyalgia can be mistakenly applied as a diagnosis. A low functioning pituitary gland and/or HPA axis dysfunction is often the actual physiological cause of the presenting symptoms.

Adrenal insufficiency is a serious disorder that develops over months and years. Symptoms wax and wane. Cortisol is a life essential hormone. The pituitary gland does not easily relinquish its pivotal function in regulating adrenal gland secretion of cortisol. The pituitary gland will compensate as best as it can for as long as it can.

Onset of adrenal insufficiency is typically in the late 40s to early 50s where the underlying cause is a low functioning pituitary gland (hypopituitary).

The use of exogenous corticosteroids (ex. Epidural steroid injections for back pain; Medrol packs dispensed for disc protrusions; oral corticosteroids/prednisone to treat inflammation or an auto immune condition; steroid inhalers for asthma) has the secondary effect of causing pituitary suppression of ACTH (the hormone that communicates with the adrenal glands). Anyone who has taken steroids on a low dose for a long term basis or at a high dose/burst for a short term basis should keep adrenal insufficiency in their active memory. It may be you/the patient that mentions adrenal insufficiency to a treating physician. As an endocrine condition, physicians have little awareness of adrenal insufficiency. Simply put, adrenal insufficiency often escapes casual consideration by physicians. They do not look for it.

I am a classic example of inept medical care with a long litany of misdiagnoses. Years and years of shuffling from one MD to another MD. Erroneous diagnoses - premature ovary failure, fibromyalgia, ankylosising spondylosis, rheumatoid factor, irregular heart rhythm, inflammatory bowel disease. It wasn’t until I presented to the emergency room unconscious in a full adrenal crisis that I was correctly diagnosed.

Diagnosis of adrenal insufficiency, unfortunately, is not a simple nor straightforward process. The diagnosis involves complex blood laboratory chemistry studies where interpretation of the blood laboratory values is key. An endocrinologist who treats metabolic patients with diabetes is not skilled in the interpretative science of the blood chemistry values. If you think that you may have adrenal insufficiency, you will need to see an endocrinologist with HPA axis speciality or pituitary speciality. Here is where the PNA and NADF can play a most helpful role. Each provides referral assistance to speciality endocrinologists or Pituitary Centers (speciality clinics in a large hospital system).

Treatment involves taking replacement hydrocortisone and aldosterone, as oral medications. Dosing is several times a day. You are trying to mimic the normal body response in secreting cortisol. Sadly, the end result is less than encouraging. Most people struggle with feeling
unwell. There is not real-time cortisol pump as there is available for insulin.

If you think that the symptoms of adrenal insufficiency parallel your own sumptoms, use the PNA or the NADF as a resource. The NADF is a small, non-profit organization. Calling in, you will be greeted by a real person at the other end of the line.

I am also happy to field any questions or guide you in next steps. In giving awareness to adrenal insufficiency, I have facilitated several people in getting accurately diagnosed. It gives a measure of meaning of my own struggles to be able to help even one person have a better outcome than my own.

Best wishes,
Karen
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)
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