MDJunction Very Informative for Fibromyalgia Sufferers

For those of you diagnosed with fibromyalgia, I highly recommend checking out the Fibromyalgia Forums at MDJunction.   It is a message board, of sorts, for fibromites (as they call themselves) and the wealth of information exchanged is unique and helpful as it all comes from others who live with this condition.

There are also areas to share recent news and articles relating to fibromyalgia, as well as a lounge for off-topic discussions.  Joining is fairly simple and allows you to create a profile to share with others.  They also have a diary feature for those who like blogging and sharing your experiences online.

I don’t often have the time and energy to keep up with two blogs, so this one has been neglected, somewhat, and I’m considering changing locations all together.  I’ve come to appreciate an audience of people who are walking in my shoes at MDJ, whereas here you sometimes get the random “STOP WHINING” comment from people who don’t understand what FM can be like.   They even have a forum just for folks with hypoglycemia, but I seem to be the only active member at this point.  Maybe because everyone else had a doctor who took it seriously enough to actually treat it?  Ha, ha.

Hope to see some of you there!

Could it be Something Else?

I’ve joined the fibromyalgia group over at MDJunction and now repeating my “events of the day” yesterday on wordpress seems a bit too redundant, ha, ha.  Let me summarize by saying I woke up feeling a little better and managed to get a few chores knocked out that took the wind out of my sails again.  Meanwhile, Kaden was acting rather “puny” and later that evening, started running a fever.  We both went bed at 6 p.m. and I woke up about an hour later feeling even worse that the day before!  Seeing how my son and I both were feeling pretty horrible, I’m thinking we’ve just come down with something.  Considering the amount of achiness, I was just sure we had the flu, but Kaden’s had considerable improvement this morning so perhaps it was just a little bug.

I’m still using the inhaler and could taste it in my mouth and smell it in my nose all day yesterday and felt that explained the scratchiness, but last night, my throat was just RAW!  Still is today.  My nose is a little stuffy, but I’m also still taking the decongestant so that may be why I’ve not had much issues with that.  Kaden has a little stuffiness and his throat is red, as well.  No sign of fever this morning, though… YAY!

I checked out the calendar yesterday to see when Spring was finally going to get here, thinking maybe we would be past all this cold/flu/bug season stuff and I’m counting down the days, ha, ha.

Two Steps Back?

One step forward… two steps back.  That’s how I feel… time and time again.  I had a major setback today, but hopefully it is just a little bump in the road and I’ll be back on track tomorrow.  Don’t know exactly what’s going on and no guesses at what is even to blame.  I felt “rough” all morning, but that just got progressively worse as the day wore on.  I wound up taking a late nap this evening and since Kaden had been whiney the majority of the day, I stuck him in with me.  We both passed slap-out and stayed out quite a few hours.  Too many hours, most likely, because now I feel even worse.

Let me see if I can put into words how I’m feeling…

I feel like I’m the only “real” object in the world and everything around me is some sort of surround-viewing TV screen.  Better yet, I’m in that movie “Lawnmower Man” with a virtual reality helmet on.  Those hands I see reaching out are my hands, but the things they touch seem more a figment of my imagination than true objects.

My muscles are not relaxing as they should.  For instace, I tried to push the covers off my feet with my right foot and the muscles in my arch tensed up and would not release.  It wasn’t a crampy spasm like we all sometimes get, though.  I should be thankful for that at least, huh?  And my feet aren’t the only body parts having this problem.  My legs are the worst!  A simple walk from one room to the other tightens my muscles up so much that it seems they could snap at any moment.  

On top of that, I’m stiff as a board!  Popping and cracking like some 90 year old with arhritis from head to toe.  Oh wait… I practically do have arthritis head to toe, ha, ha.  Lets see… the rash is coming back, I’m having trouble swallowing again, my headache is teetering between bad and unbearable, my eyes and mouth are extremely dry again, and I have absolutely no ambition or get-up-and-go or whatever you want to call it.  

Dramatic change from yesterday to today!  Yesterday, I was feeling so good I actually got caught up on some neglected chores and STILL felt like getting out of the house for a while.  Of course that makes me have to ask myself if I over did it, but not even once yesterday did I feel like I was having to “push” myself.   

I got so down and overwhelmed today that I called and cancelled my appointment with the shrink tomorrow.  I knew taking a late nap would mean Kaden would be up half the night and that would mean dragging him out of bed with little to no sleep and then having to contend with him the remainder of the day.  My appointment was at 9 a.m. and I’m never up and “about” much before that.  The idea of getting up extra early was just too much, if that makes sense.  I’ll probably regret that decision if I wake up feeling better tomorrow, but that’s a gamble I was willing take.  There’s just no reasoning with myself when I’m like this.

Marked Improvement

I cannot believe how much better I am feeling today!  Amazing what a little breathing can do for a body, huh?  I’ve also not had any “anxiety” attacks, but that stands to reason because that’s not exactly what they were after all.  That wheeze my mother and the doctor picked up on comes from bronchial spasms and it causes what is pretty similar to an asthma attack.  I’ve never had that happen before so I was clueless.  All I knew was my chest was getting tight, my pulse was racing, my heart was pounding, and so on and so on.  I’ve never taken asthma lightly, but having experienced a taste of it myself, I have even more sympathy now for those who have to deal with that on a regular basis.  But the inhaler has brought all that under control with four simple puffs a day.  YAY!  I was able to walk to the mailbox today without getting winded, but longer distances still leave me a little gaspy.  Mom got me some “lung toys” to help build all that back up, though.  I’m blowing pretty good numbers, but nearly cough myself to death afterward.  That’s good too, though.  Need to get all this crap up and out before it turns into pneumonia.

I also got a call from the PA today and she tells me my lung x-ray was normal.  Another big YAY, but no real surprise.  Before the respiratory virus, I was perfectly fine in that regard and suspected this was more likely an acute problem than something chronic.  I realize in my last post I came off sounding like I didn’t much care for this new PA, but that is not the case at all.  We disagreed on a few things and I got frustrated about it, but that’s what this blog is for… to vent those frustrations.  Turns out, having such a lengthy debate may have paid off.  She asked me today if I had ever had a two-hour glucose test and I told her my last one was with Stephanie, the other PA at the office.  She checked my file and saw that I had, so now she’s planning to meet with Stephanie and discuss a plan for addressing the hypoglycemia.  I don’t know what that means exactly, but anything would be progress. 

I don’t think I mentioned here that when I was referred out to the rheumatologist there was a mix up in my doctor’s office and they assumed I was seeing another regular doctor so I lost my spot with Stephanie.  They offered to set me up with the PA I’ve just seen and I was all ANXIOUS (ha, ha) about it because I hate starting all over with someone else, but having met her now, I think it will work out just fine.  I keep referring to her as “the doctor” in this blog, but that’s out of habit, not misunderstanding the difference between the two.  Oh… and the biggest difference… PAs have more time for patients, ha, ha.  They haven’t had their humanity beaten out of them with 8 years of med school, either, ha, ha.

So now… back to enjoying my new found relief!

Going on the Defensive

I signed on tonight to write a few short sentences about my much improved health, but after reading my latest comments I’m feeling rather frustrated and will do some venting instead.

Blaire seems to be very upset that some of the symptoms I’ve been having of late may be attributed to something other than mental illness.  In her efforts to convince me that all of my health problems have a psychological basis, she’s simply coming off as one of those people who would tell someone with fibromyalgia or autoimmune disease that they are just depressed.  Since the focus of one of her comments was dismissing my hypoglycemia, I would like to share an article by Vasudevan A Raghavan, MBBS, MD, MRCP from the Division of Endocrinology at Ohio State University (because someone clearly needs educated on the difference between reactive and fasting hypoglycemia):

Hypoglycemia is a syndrome characterized by a reduction in plasma glucose concentration to a level that may induce symptoms of low blood sugar. Hypoglycemia typically arises from abnormalities in the mechanisms involved in glucose homeostasis. To diagnose hypoglycemia, the Whipple triad characteristically is present. This triad includes the documentation of low blood sugar, presence of symptoms, and reversal of these symptoms when the blood sugar level is restored to normal.

Hypoglycemic symptoms are related to the brain and the sympathetic nervous system. Decreased levels of glucose lead to deficient cerebral glucose availability (ie, neuroglycopenia) that can manifest as confusion, difficulty with concentration, irritability, hallucinations, focal impairments (eg, hemiplegia), and eventually, coma and death. Stimulation of the sympatho-adrenal nervous system leads to sweating, palpitations, tremulousness, ANXIETY, and hunger. [hmmm... that all sounds very familiar, huh]

The adrenergic symptoms often precede the neuroglycopenic symptoms and, thus, provide an early warning system for the patient. Studies have shown that the primary stimulus for the release of catecholamines is the absolute level of plasma glucose. The rate of decrease of glucose is less important. Previous blood sugar levels can influence an individual’s response to a particular level of blood sugar. However, one must appreciate that a patient with chronic hypoglycemia can have almost no symptoms.

Symptoms of hypoglycemia may be categorized as neurogenic (adrenergic) or neuroglycopenic.

• Symptoms due to sympatho-adrenal activation include sweating, shakiness, tachycardia, anxiety, and a sensation of hunger.
• Neuroglycopenic symptoms include weakness, tiredness, or dizziness; inappropriate behavior (sometimes mistaken for inebriation), difficulty with concentration; confusion; blurred vision; and, in extreme cases, coma and death.
• The timing of onset of these symptoms relative to the time of meal ingestion is crucial in the evaluation of a patient with hypoglycemia. Fasting hypoglycemia typically occurs in the morning before eating or during the day, particularly in the afternoon if meals are missed or delayed. Postprandial hyperglycemia typically occurs 2-4 hours after eating food, especially when meals contain high levels of simple carbohydrates. Postprandial symptoms are typically due to reactive causes, but some patients with insulinoma also may present with postprandial symptoms. About 4-6 hours after food ingestion, plasma glucose concentrations are 80-90 mg/dL, and rates of glucose utilization and production are approximately 2 mg/kg/min. Glucose production is primarily (70-80%) from hepatic glycogenolysis, with a lesser contribution (20-25%) from hepatic gluconeogenesis.

Causes of Fasting Hypoglycemia

• Nesidioblastosis is characterized by a diffuse budding of insulin-secreting cells from pancreatic duct epithelium and pancreatic microadenomas of such cells; it is a rare cause of fasting hypoglycemia in infants and an extremely rare cause in adults.
• Causes of fasting hypoglycemia usually diagnosed in infancy or childhood include inherited liver enzyme deficiencies that restrict hepatic glucose release (deficiencies of glucose-6-phosphatase, fructose-1,6-diphosphatase, phosphorylase, pyruvate carboxylase, phosphoenolpyruvate carboxykinase, or glycogen synthetase). Inherited defects in fatty acid oxidation, including that resulting from systemic carnitine deficiency and inherited defects in ketogenesis (3-hydroxy-3-methylglutaryl-CoA lyase deficiency) cause fasting hypoglycemia by restricting the extent to which nonneural tissues can derive their energy from plasma FFA and ketones during fasting or exercise. This results in an abnormally high rate of glucose uptake by nonneural tissues under these conditions.
• Drugs – Ethanol, haloperidol, pentamidine, quinine, salicylates, and sulfonamides
• Insulin-producing tumors of pancreas: Islet cell adenoma or carcinoma (insulinoma) is an uncommon and usually curable cause of fasting hypoglycemia and is most often diagnosed in adults. It may occur as an isolated abnormality or as a component of the type I multiple endocrine neoplasia (MEN) syndrome. Carcinomas account for only 10% of insulin-secreting islet cell tumors. Hypoglycemia in patients with islet cell adenomas results from uncontrolled insulin secretion, which may be clinically determined during fasting and exercise. Approximately 60% of patients with insulinoma are female. Insulinomas are uncommon in persons younger than 20 years and are rare in those younger than 5 years. The median age at diagnosis is about 50 years, except in patients with MEN syndrome, in which it is in the mid 20s. Ten percent of patients with insulinoma are older than 70 years.
• Non–beta-cell tumors: Hypoglycemia may also be caused by large non–insulin-secreting tumors, most commonly retroperitoneal or mediastinal malignant mesenchymal tumors. The tumor secretes abnormal insulinlike growth factor (large IGF-II), which does not bind to its plasma binding proteins. This increase in free IGF-II exerts hypoglycemia through the IGF-I or the insulin receptors. The hypoglycemia is corrected when the tumor is completely or partially removed and usually recurs when the tumor regrows.
• Autoimmune hypoglycemia – Insulin antibodies and insulin receptor antibodies
• Surreptitious sulfonylurea use/abuse
• Hormonal deficiencies – Hypoadrenalism (Cortisol), hypopituitarism (growth hormone) (in children), glucagons deficiency (rare), and epinephrine (very rare)
• Critical illnesses – Cardiac, hepatic, and renal diseases; sepsis with multiorgan failure
• Combination of one or more of the above, for example, chronic renal failure and sulphonylurea ingestion

Diet

• Dietary therapy may be effective for improving symptoms in patients with fasting hypoglycemia. Frequent meals/snacks are preferred, especially at night, with complex carbohydrates.
• For patients with reactive hypoglycemia, initiate a carbohydrate restriction. Patients should avoid simple sugars, increase the frequency of their meals, and reduce the size of their meals. Patients may require 6 small meals and 2-3 snacks per day.

Activity

Because exercise burns carbohydrates and increases sensitivity to insulin, patients with fasting hypoglycemia should avoid significant activity. On the other hand, patients with reactive hypoglycemia often find that their symptoms improve after embarking on a routine exercise program.

Further Outpatient Care

• If the patient has fasting hypoglycemia and the cause is treatable, long-term follow-up usually is not needed. If the cause cannot be treated definitively (eg, inoperable pancreatic insulinoma), diazoxide can be used to elevate blood glucose levels and chemotherapy that specifically targets the beta cell (ie, using cytotoxic agents such as streptozotocin) should be considered.
• If the patient has reactive hypoglycemia, periodic outpatient monitoring is warranted to assess the continued presence of symptoms.

Complications

• Untreated fasting hypoglycemia can lead to severe neuroglycopenia and, possibly, death.
• Untreated reactive hypoglycemia may cause significant discomfort to the patient, but long-term sequelae are not likely.

Prognosis

• Prognosis depends on the CAUSE of the hypoglycemia. If the cause of fasting hypoglycemia is identified and curable, prognosis is excellent. If the problem is not curable, such as an inoperable malignant tumor, long-term prognosis is poor. [wonder what the prognosis is if your doctors don't even bother to look for the cause?] However, note that these tumors may progress rather slowly.
• If the patient has reactive hypoglycemia, symptoms often spontaneously improve over time, and long-term prognosis is very good.