From Huskies To Husbands

Well I had another appointment with the PA today…

They had me submit another urine sample to be sent out for culture to determine if I need to go back on the antibiotics or if the urinary tract infection has cleared.  The quick basic results looked positive but we have to wait for the culture to come back from the lab for a firm answer on that front.

The PA and I had the talk - You know the one that goes like this “Stephanie, I think that you have Fibromyalgia and need to see a Rheumatologist to get a definite diagnosis.  Hopefully they will be able to help work out a treatment plan to reduce your pain and allow you to get back to leading a more normal life.”  At first I looked at him in disbelief even though we have been considering this as the problem for a while now.  Then I asked him does this mean that I can’t bear children.  He said that in and of itself it doesn’t mean that but that with the PCOS conceiving probably will be difficult.  I then asked what do we do next.

The PA sent me to look at the Fibromyalgia Network  for the following information…

Common symptoms of fibromyalgia and chronic fatigue syndrome:

• Pain - The pain of fibromyalgia has no boundaries. People describe the pain as deep muscular aching, throbbing, shooting, and stabbing. Intense burning may also be present. Quite often, the pain and stiffness are worse in the morning and you may hurt more in muscle groups that are used repetitively.  (I have the burning especially , and the deep muscular  aching with throbbing plus more)
• Fatigue - This symptom can be mild in some fibromyalgia patients and yet incapacitating in others. The fatigue has been described as “brain fatigue” in which patients feel totally drained of energy. Many patients depict this situation by saying that they feel as though their arms and legs are tied to concrete blocks, and they have difficulty concentrating, e.g., brain fog.  (I have been complaining of the brain fog more and more and the extreme fatigue just never seems to end.)
• Sleep disorder - Most fibromyalgia patients have an associated sleep disorder called the alpha-EEG anomaly. This condition was uncovered in a sleep lab with the aid of a machine that recorded the brain waves of patients during sleep. Researchers found that the majority of fibromyalgia patients could fall asleep without much trouble, but their deep level (or stage 4) sleep was constantly interrupted by bursts of awake-like brain activity. Patients appeared to spend the night with one foot in sleep and the other one out of it.
  Sleep lab tests may not be necessary to determine if you have disturbed sleep. If you wake up feeling as though you’ve just been run over by a Mack truck—what doctors refer to as unrefreshing sleep—it is reasonable for your physician to assume that you have a sleep disorder. Many fibromyalgia patients have been found to have other sleep disorders in addition to the alpha-EEG, such as sleep apnea (as well as the newly discovered form of interrupted breathing called upper airway resistance syndrome, or UARS), bruxism (teeth grinding), periodic limb movement during sleep (jerking of arms and legs), and restless legs syndrome (difficulty sitting still in the evenings).  (I never feel rested after I sleep and I often say that I feel like I have been run over by a Mack truck after I get up from trying to sleep.)
• Irritable Bowel Syndrome - Constipation, diarrhea, frequent abdominal pain, abdominal gas, and nausea represent symptoms frequently found in roughly 40 to 70% of fibromyalgia patients. Acid reflux or gastroesophageal reflux disease (GERD) also occurs with the same high frequency.  (I have documented severe IBS and GERD.)
• Chronic headaches - Recurrent migraine or tension-type headaches are seen in about 70% of fibromyalgia patients and can pose a major problem in coping for this patient group.  (I suffer from migraines that are debilitating.)
• Temporomandibular Joint Dysfunction Syndrome - This syndrome, sometimes referred to as TMJ or TMD, causes tremendous jaw-related face and head pain in one-quarter of fibromyalgia patients. However, a 1997 published report indicated that close to 75% of fibromyalgia patients have a varying degree of jaw discomfort. Typically, the problems are related to the muscles and ligaments surrounding the jaw joint and not necessarily the joint itself.  (I have had massive jaw surgery due to TMJ and a jaw misalignment.)
• Other common symptoms - Premenstrual syndrome and painful periods, chest pain, morning stiffness, cognitive or memory impairment, numbness and tingling sensations, muscle twitching, irritable bladder, the feeling of swollen extremities, skin sensitivities, dry eyes and mouth, dizziness, and impaired coordination can occur. Fibromyalgia patients are often sensitive to odors, loud noises, bright lights, and sometimes even the medications they are prescribed.  (I suffer from PCOS and PMDD which is the more severe form of PMS.  I often complain of swollen hands and feet.  I have very sensitive skin.  I often suffer from dry eyes and mouth.  I am very sensitive to odors and lights and have numerous problems with medications that doctors try to give me.)
• Aggravating factors - Changes in weather, cold or drafty environments, infections, allergies, hormonal fluctuations (premenstrual and menopausal states), stress, depression, anxiety and over-exertion may all contribute to fibromyalgia symptom flare-ups.  (I notice that I hurt worse when the weather changes or if I get a chill.  Also, things were greatly aggravated by the urinary tract infection that I have been suffering with.  I also notice that things are worse when TOM is visiting and when I get stressed out and anxious.  I also can’t do as much as I used to do because when I do push to work at the levels I used to my body just rebels even further.)

The PA also recommended that I look up the 18 Tender Points of Fibromyalgia…

I test positive at 16 of the 18 listed at the above site.

The current plan is to continue working to eliminate the wheat from my diet.  He agrees that doing this slowly is probably the best plan right now as we don’t want to shock my body further.  I will be continuing on with the vitamin regimen and working to eliminate anything not natural from my foods as well as other environmental factors.  The PA is working to get me in to see a Rheumatologist and will continue looking into other options that might help me in the meantime.

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