A Brief Update
There are no more good days. Occasionally, Nichelle will have a few hours when she is able to be somewhat active, but it appears that even days like our 1/2-day MFA trip are now impossible. The pain is more severe, and Nichelle’s general debilitation is both more severe and the episodes last longer. Walking any real distance is nearly impossible, although she did complete a less-than-30-minute trip to Wal*Mart last week, this is exceptional. There are unexplained symptoms, like the tiny purpura spreading through her skin, as well as inexplicably normal test results, such as for free T4 (one of the thyroid hormones) and cortisol.
It’s very frustrating. Our most dedicated doctor admits that this is outside his specialty (neurology), and other doctors seem unwilling to exert the effort to find the cause of these problems. If we were to diagnose based merely upon symptoms, my conclusion would be hypothyroidism on top of fibromyalgia. However, the hormone tests run so far for hypothyroidism have been negative. (But hormone problems are often difficult to diagnose, and may defy test-based diagnosis for years.)
Symptoms such as she is now suffering go back all the way to 1992, although they have been increasing in severity enough to be very troublesome for about the last 7 years, the last two years have been much worse. More detail and history are available by clicking on the fibromyalgia category for our BLOG.
Nichelle has copies now of most of her medical records. We are leaving no stone unturned. The common theme expressed by doctors is, “I dunno.”
On the bright side, the illness did make shopping for Nichelle’s birthday presents easy: DVDs from Amazon.
By the way, if you haven’t read this post about Nichelle, you should!
|Severe edema (fluid shift) with weight fluctuations of 5 lbs. in the course of a day. The swelling varies in intensity, especially around the face, but is always bad.||Continuing.||Cushing’s Syndrome, Hypothyroidism.|
|Significant weight gain (over 65 pounds) in the past year, despite healthy diet and a significant daily exercise regimen (until last fall, when exercising became impossible).||Constant. Weight tends to suddenly shoot up every few weeks.||Cushing’s Syndrome, Hypothyroidism, medication interactions (from the tricyclics used to prevent migraines and sleep problems).|
|Burning sensations, primarily in the hips and back.||Many hours each day.||Fibromyalgia, hypocalcemia, secondary hyperparathyroidism.|
|Pain. Moderate to severe pain nearly always. Episodes of severe, stabbing pain on a daily basis. More than one episode per month of pain as severe or more severe than unmedicated childbirth.||Daily.||Fibromyalgia, migraines, hypocalcemia, myofascial pain syndrome.|
|Difficulty walking or standing.||Constant. Currently able to maintain only a decreasingly short amount of activity at a time.||Unknown.|
|Rapid deterioration of “normal” health over the space of 1/2-hour (normal as defined by the current baseline: still not very good, but able to function with only minor or moderate difficulty).||Daily, when basal health is temporarily good enough to demonstrate a decline.||Hypothyroidism, fibromyalgia.|
|Extreme discomfort in having anything touching the skin on her arms. (Skin sensitivity.).||Weekly.||Unknown.|
|Pins-and-needles sensations all over, especially the head.||Daily.||Fibromyalgia, secondary hyperparathyroidism.|
|Periodic cognitive difficulties. (This is the only symptom that has been less severe than a year ago, we believe because of partly successful treatment of sleep-disturbing migraines.).||Several times a week.||Hypothyroidism, fibromyalgia, hypocalcemia.|
|Sudden or prolonged exhaustion.||Nearly daily.||Hypothyroidism, fibromyalgia.|
|Painful, unusually strong sensitivity to having anything cold come in contact with skin.||Constant.||Fibromyalgia.|
|Feeling very hot or very cold not in conjunction with actual temperature. (Feeling extremely cold often immediately precedes episodes of severe pain.) Night sweats.||Daily.||Hypothyroidism.|
|Occasional inability to grip small items, such as table utensils.||A few times per month.||Unknown.|
|Inability to raise arms or hold an item such as a cell phone against her ear or face.||Constant.||Cushing’s syndrome.|
|Difficulty putting weight on wrists to support.||Constant.||Possible bone problems, hypocalcemia, secondary hyperparathyroidism.|
|Hair breakage/brittle hair. Hair loss on arms, legs, and hands.||Continuing.||Hypothyroidism.|
|Small spots that look like dark freckles that are appearing all over the skin and slowly multiplying. The ones that are a couple of weeks old are now increasing in size. (I had previously labeled these as purpura, but Dr. Hall told us that purpura describes such spots only when they are caused by platelet problems.)||Continuing to increase in number.||Unknown.|
|Severe pain in the bones of her wrists, feet, collarbone, and ribs.||Constant.||Secondary hyperparathyroidism, possible bone problems, hypocalcemia.|
|Stretch marks and skin discoloration over an ever-increasing number of areas.||Continuing to worsen.||Cushing’s Syndrome, may be secondary to the significant edema and weight gain.|
|Dizziness.||Several times a day.||Fibromyalgia.|
|Nausea.||Several hours each day.||Hypothyroidism, fibromyalgia.|
|Low body temperature (1 degree or more below normal) most of the time.||Constant. One or twice a week temperature approaches (but does not reach) normal.||Hypothyroidism.|
|Low calcium level (hypocalcemia).||Current.||Vitamin D deficiency, parathyroid problems.|
|High PTH (Human parathyroid hormone) level.||Current.||Parathyroid problems, could be secondary to vitamin D deficiency.|
The official diagnoses, which have not helped with a treatment or identified the causes (most are merely descriptions of symptoms), for the most part, the following:
- Myofascial pain syndrome
- Secondary hyperparathyroidism
- Vitamin D deficiency
- Hypocalcemia (probably caused by vitamin D deficiency or parathyroid problems)
- Neurosomatic syndrome
- Periodic limb movement disorder (believed being successfully prevented with medication)
What We’ve [Mostly] Ruled Out:
Fibromyalgia is, itself, generally diagnosed by ruling out everything for which a definitive clinical test exists. Here are the few other things that have been ruled out:
- Lupus (this has been repeatedly tested for about the past 10 years; it has always been negative)
- Heart problems/heart disease
- Sickle cell anemia
- West Nile virus
- Lyme disease
In addition, Cushing’s Syndrome seems less likely than hypothyroidism, due to the fact that some classic symptoms of Cushing’s are absent.
This analysis is hardly complete; there are certainly other possible explanations of these symptoms. If you have other suggestions, please let us know. Personally, I think it’s just Munchausen Syndrome. (Or maybe it’s Munchausen Syndrome by Proxy, just like in The Sixth Sense.)
At any rate, keep praying.