2/19/11

When is it NOT Fibro???


In the last 15 years I've struggled with all kinds of pains and symptoms; running from doctor to doctor and in the process driving myself crazy with uncertainty...

I bounced from psychiatrists to gynecologists, to dermatologists and internal medicine doctors, doing all sorts of expensive & unnecessary labs, going to sleep therapy, doing special diets, and also alternative homeopathic medicine, hoping to find solutions for the wide variety of health issues that ailed me including many “secondary” symptoms such as the following:

Hair loss, ridges & brittle nails, dry itchy skin & scalp, dry eyes & mouth, painful vulva, painful sexual intercourse, recurring yeast infections, urinary frequency & urgency, heart palpitations, jaw joint pain & clicking, severe allergies, irritable bowel syndrome, arch or heel pain, difficulty making normal calculations, memory problems, sleep disturbances, anxiety and panic attacks, mood swings, light headedness, extra sensitive to bright lights & loud sounds, change in taste & smell, ringing in the ears, muscle spasms, sudden shooting pains, tingling sensation in fingers or toes, weight gain and more…

After endless tears and hundreds of dollars in lab tests, NO ONE could really pinpoint the source of my problems and the solution to everything was “take these pills”….

But after being diagnosed with Fibromyalgia and learning to live with it, my question now becomes this:

How do we know when something is NOT fibro-related?

When is it time to go to the doctor to have something checked out and when is it ok to tell ourselves it’s just a “bad” fibro day…?! When should we be concerned about a new symptom and when should we just ride it out?

I want to share the story of two fibromite friends of mine, each with a different attitude & outcome to the same illness.

fibroRibbon1FRIEND #1

A good friend of mine who suffers from fibromyalgia had recently developed a deep pain in the left shoulder. As with most things, she wrote it off as fibro and just took her pain meds, used heating pads and electric massagers to help relieve some of the pain. Almost a year later, the shoulder was in such poor condition she could no longer lift or swing the arm in any direction, so she went to see an orthopedic surgeon. It turned out she had Bursitis. In addition to that, the joint would be needing surgery soon AND on top of everything else, the spine in the upper back & neck area was severely misaligned and needed immediate chiropractic service!!!

 

fibroRibbon1FRIEND #2

Another friend of mine who had recently been diagnosed with fibromyalgia, was still in the “denial” stages of the illness and could not accept that all the different aches and pains were caused by fibro. He insisted that something wasn't right and he was determined to find the real cause of his sickness... He came back with many different answers, but none that would completely address all the symptoms he was experiencing. One of the doctor's told him he may have Big Cell disease (I've never heard of it!); then he was told he had some kind of Auto Immune problem but they weren't sure if it was AI Hepatitis; Another doctor told him it was a Virus, like a dormant herpes complex, and another doctor told him it was a low testosterone problem and would need hormonal therapy. Yet another doctor told him that all the manifestations of the physical symptoms were purely Psychological!

In the first example, Friend #1 was sure that everything was related to Fibromyalgia! She just coped with it as best as she knew how until the shoulder joint deteriorated and needed surgery! But how could she have known it was a separate issue?

In the second example, Friend #2 had a whole different approach to everything that was happening to him. In his mind, each distinct ailment was a separate medical issue in need of a different doctor. In his case, it took 8 doctors and 4 specialists to give him all these treatments & medications but none of them ever considered the possibility of fibromyalgia.

It's interesting that my 2nd friend went back to his rheumatologist to show him the long list of drugs & therapies the other doctors had prescribed for him. The rheumatologist went over each and every one of those diagnoses, explaining why they were mistakenly given and why they would not work!

We all know that doctors can only offer their professional opinion but they too, have limitations in their knowledge of fibromyalgia but also have limitations to how much patience & understanding they can give. If we constantly complain about all the little stuff, will they really listen when we have something huge to address???

In the last decade I've formed my own little philosophy about fibro and this helps me from expecting too much from others:

Fibromyalgia is like Art ---Everyone Sees it With a Different Eye!

And for this reason, I'd like to share a few of my personal guidelines to telling the difference between what Is Fibro and When It's Not Fibro!

Take a look at this chart and print it out if necessary. You should acquaint yourself with all the “related” symptoms that can accompany Fibromyalgia. If you experience a new symptom that does not fall in any of these categories or persists for longer than three weeks, please see your doctor as soon as possible!

*note: No part of this post is to be used as medical advice. This is not a professional treatment nor a diagnostic tool. All written portions of this blog are based solely on my personal opinion & experience of this chronic illness.   


arrows Chronic Fatigue & Fibromyalgia Revealed!

Symptoms & Syndromes Linked to Fibromyalgia

NEUROLOGICAL

  • Paresthesia: numbness or tingling (non-dermatomal).

  • Headaches: tension & migraine.

  • Neurogenic inflammation: inflammatory sensation (rashes, itching, inflammation) initiated by nerves. A discrete, localized inflammatory response which doesn’t activate the immune system or show up on tests.

  • Cognitive: difficulty with concentration & short-term memory.

SENSORY

  • Auditory: low frequency, sensorineural hearing loss; decreased painful sound threshold.

  • Vestibular: exaggerated nystagmus (involuntary rapid movement of the eyeball), dizziness, vertigo.

  • Ocular: impaired function of smooth muscles used for focus as well as skeletal muscles used for tracking.

CARDIAC PULMONARY

  • Mitral valve prolapse—a benign cardiac condition; 75% incidence in FM patients. Disorder may be due to neurological hyperactivity rather than a defect in the heart valve.

  • Heart palpitations.

  • Non-cardiac chest pain which may simulate cardiac disorder.

  • Abnormal smooth muscle tone in the muscles surrounding the bronchi of the lungs.

GASTROINTESTINAL

  • Heartburn.

  • Irritable bowel syndrome.

  • Esophageal dysmotility: objective abnormalities in smooth muscle functioning & tone in the esophagus; 40-70% incidence in FM patients.

GENITOURINARY

  • Painful menstruation.

  • Increased urinary frequency & urgency.

  • Increased incidence of interstitial cystitis.

  • Vulvar vestibulitis or vulvodynia: painful vulvar region & painful sexual intercourse.

MISCELLANEOUS

  • Joint hypermobility.

  • Temporomandibular joint disorder: problems with abnormal tone in muscles around the joint—not because of abnormalities in the joint itself.

  • Plantar arch or heel pain.

*Summarized from the book, “Taking Charge of Fibromyalgia,” p. 9.


arrows[5] Fibromyalgia Natural Cure!


Fibromyalgia Awareness

5 comments:

Tina Peterson on February 20, 2011 at 7:00 PM said...

What a wonderful post thanks! I was diagnosed about 14 years ago (I think - it's been a blur) and the last 4 years it has gotten so much worse. Up until then I was only on 1 pill and even that I couldn't tolerate to well. I'm now on Gabapentin and Meloxicam and feeling quite a bit better.

I think the real eye opener for me was when I started feeling really sluggish (anemic) and my period wouldn't stop (every 2 weeks). I ended up having a growth in my uterus and had to have surgery. I was also diagnosed a year later with a thyroid that wasn't working at all and my Vit D levels were nil.

I think that if you have a "symptom" that lasts more than 3-4 weeks (I never realize until months later I'm in a flare up) - you need to start documenting and "watching" whats happening. And seriously consider going to the doctor - it's not worth getting so run down you keep falling asleep and the headaches or pains or whatever it is until you can't function anymore. Great article!

Tina "The Book lady"
http://familyliteracyandyou.blogspot.com
http://givingnsharing.blogspot.com

MelanieGreenbergPhD on March 13, 2011 at 4:45 AM said...

I found your blog on Blog Frog. I was actually trained in Health Psychology and know some of the research literature on fibromyalgia. I think your post was thorough, empathic, and accurate. The problem with our medical system is that it is fragmented into all these specialties, with each not knowing much about causes outside of their particular area. Thus, systemic issues like fibromyalgia can be misdiagnosed and mistreated and patients may even not be believed since nothing shows up on tests. Doctors also receive little pain-specific training. The current thinking on fibromyalgia is that the body is responding abnormality by amplifying pain input. It as if the central nervous system is at the wrong setting. Fibromyalgia is a mind body problem and may be helped by a combination of cognitive-behavior therapy or biofeedback and gentle exercise. medications may help some patients. I think the moral of your story is that we need to become active managers of our own health and try to educate ourselves, find support and resources online, and not rely only on the traditional medical system.

A Gracious Home on April 18, 2011 at 11:28 AM said...

I'm so glad to find your blog. I have FM and all syndromes that go with it. I also have Lupus and diabetes. I have a FM blog that I have neglected but it has some good info on it.
http://doylene.wordpress.com/

DePuy Pinnacle Lawsuit on January 31, 2012 at 7:03 AM said...

Interesting blog you have here about fibromyalgia and its way to be prevented or cured. Thanks for sharing this.

EMR WORK FORCE on February 24, 2012 at 9:14 AM said...

Every healthcare provider should switch to an EMR solution. Paper based records and prescriptions are a thing of the past now and it would be best for both doctors and patients to take advantage of their features and accessibility.

Medical Billing I Free EMR

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