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Thread: Pots

  1. #1
    Join Date
    Mar 2012
    Thanked 68 Times in 52 Posts

    Default Pots

    I saw a nurse practitioner this week at my rheums office. She was actually more helpful than my doctor. Very willing to listen and addressed all my concerns. Literally looked at me for over an hour. I like feeling listened to. She thinks this all might actually be fibro related though, which I still can't wrap my head around. My rheum basically wrote in my file that I had fibro months ago and never wanted to explain it to me. The NP told me that if it is the fibro not the lupus then she wants to look into a fibro/dysautonomia/POTS overlap. She ordered a tilt table test but I'm not sure when I'll be able to get the test done. I wish my doctor would have talked with me more about this fibro stuff, because I'll be honest I kind of think of fibro as a bogus dx even though I KNOW it isn't. I just can't think of it the same way as my other diseases. I understand my AIs, my immune system is attacking me. This fibro stuff I don't get because I feel like people don't really get what causes it.

    I was also hoping for some thoughts on a test result. I know none of us are doctors, but after finding out that I might have POTS I wanted to look into it. I saw something that suggested many people have an antibody with it and the name of it sounded familiar and this is what I found from a test I had done in 2010 that no one told me about. If you would give me your interpretation I would appreciate it.

    --------- ------ ---------------
    Anti Neuronal Cell Ab *>400 (0 - 54) UNITS

    This test was developed and its performance
    characteristics determined by UW Medicine,
    Department of Laboratory Medicine. It has
    not been cleared or approved by the U.S. Food
    and Drug Administration.
    Above upper limit of normal.
    Performed by ARUP Laboratories,
    500 Chipeta Way, SLC,UT 84108 800-522-2787, Sherrie L. Perkins, MD, Lab. Director

    Why did no one ever mention this test to me?
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, Interstitial Lung Disease, GERD, Myositis, Vasculitis, Fibromyalgia, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 60mg Nifedipine, Nitroglycerin Patch, 20mg Prilosec, Trazadone, 8mg Medrol, 81mg Asprin.

    My old profile on here

  2. #2
    Join Date
    Mar 2011
    pinjarra, western australia
    Blog Entries
    Thanked 1,844 Times in 1,279 Posts


    i posted some information before about fibro.
    i will add it again.
    if you have any questions, please ask.

    fibro is a real problem, and can be seen in medical tests.....
    they just do not know how to correct the imbalance that occurs.

    Fibromyalgia (FM) is a multi-system illness. This illness also produces dramatic manifestations in different organs and systems of the body.
    We are not dealing with a localized ailment; rather, it is our main regulatory system that is not working properly.

    The autonomic nervous system (ANS) controls the function of the organs and systems. It is "autonomic" because our mind does not govern its performance. The ANS is the interface between mind and body functions.
    The peripheral autonomic system is divided into two branches; sympathetic and parasympathetic. The ANS represents the ying-yang concept of ancient eastern cultures.
    Sympathetic activation prepares the whole body for fight or flight in response to stress or emergencies; in contrast, parasympathetic tone favours digestive functions and sleep.
    Relentless hyperactivity of the sympathetic nervous system continues 24 hours a day. Characterized as a sympathetic nervous system that is persistently hyperactive but hypo-reactive to stress.

    There is ample evidence to sustain the fact that FM pain is real as attested by different studies demonstrating very high levels of the powerful pain-transmitting substance P in the cerebrospinal fluid of patients. This means that the problem lies in the pain-transmitting nerve itself.
    The most widely acknowledged biochemical abnormality is abnormally low serotonin levels.
    The combination of the, high levels of substance P, and low levels of Serotonin, may be the cause of FM

    The most common associated conditions include the following:
    Irritable bowel syndrome Tension/migraine headaches Dysmenorrhoea
    Nondermatomal paresthesia Temporomandibular joint syndrome Mitral valve prolapse
    Interstitial cystitis, vulvodynia Female urethral syndrome Vulvar vestibulitis
    Hypermobility syndrome Restless legs syndrome Allergy
    Enthesopathies Cognitive dysfunction Vestibular disorders
    Esophageal dysmotility Ocular disturbances Premenstrual syndrome (PMS)
    Anxiety disorders Pulmonary symptoms Depression
    Raynaud phenomenon Myofascial pain syndrome Sleep disorders
    Thyroid dysfunction Silicone breast implant syndrome Lyme disease
    Rheumatoid arthritis Systemic lupus erythematosus Sjögren syndrome
    Infections Osteoarthritis Chronic fatigue syndrome
    Carpal tunnel syndrome Hyperventilation Vision problems
    Multiple chemical sensitivity syndrome

    Every-day activities take longer in fibromyalgia patients, they need more time to get started in the morning and often require extra rest periods during the day. They have difficulty with repetitive sustained motor tasks, unless frequent time-outs are taken. Tasks may be well tolerated for short periods of time, but when carried out for prolonged periods become aggravating factors. Activities such as prolonged sitting or standing and environmental stressors such as coldness, excessive noise and rigid time/performance expectations often aggravate fibromyalgia symptoms. They describe a "window of opportunity" for constructive work that typically extends from about 10 am to 2 p.m.

    Recent studies have shown that approximately one-third of patients with lupus also have fibromyalgia. It is important to understand that the fibromyalgia in these patients develops after the lupus has become well established.

    In general, lupus patients who are undergoing a flare have findings; such as evidence of true arthritis (usually with joint swelling), skin rashes, sores in their mouth, fever, hair fall or evidence of specific organ disease such as pleurisy or microscopic amounts of blood and protein in the urine. Furthermore, in active lupus, blood tests such as the sedimentation rate often become elevated, the white count (particularly the lymphocyte subset) becomes depressed and there is often an increase in the level of anti-DNA antibodies. None of these findings are a feature of fibromyalgia

    Using single photon emission computed tomography (SPECT); researchers in France were able to detect functional abnormalities in certain regions in the brains of patients diagnosed with fibromyalgia, reinforcing the idea that symptoms of the disorder are related to a dysfunction in those parts of the brain where pain is processed.
    The researchers confirmed that patients with the syndrome exhibited brain perfusion abnormalities in comparison to the healthy subjects. Further, these abnormalities were found to be directly correlated with the severity of the disease. An increase in perfusion (hyperperfusion) was found in that region of the brain known to discriminate pain intensity, and a decrease (hypoperfusion) was found within those areas thought to be involved in emotional responses to pain.

  3. The Following 4 Users Say Thank You to steve.b For This Useful Post:

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  4. #3
    Join Date
    May 2010
    Thanked 312 Times in 251 Posts


    My wife was diagnosed with fibromyalgia, and it's so similar in symptoms to my array of symptoms, it's almost unreal. Her blood test results are different than mine though, as steve mentions above. There's some "pictures" (x-ray type things) somewhere on the net, where they show the difference between the plaques (??) of a "normal" brain, a person with MS, a fibro patient, and a couple others. Very interesting stuff. It seems that less is known of fibro than of the various lupuses (plural??) even...
    "There but for the grace of God, go I."
    "... His mercy endureth for ever."

  5. #4
    Join Date
    Jan 2010
    Houston, Texas
    Thanked 1,757 Times in 1,220 Posts


    I will tell you that some days my fibro is much harder on my then my Lupus is. Don't doubt the severity of fibro. It is real and it is painful.

    As for POTS, red has a child with Pots. You might want to talk to her

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~

  6. #5
    Join Date
    Jan 2010
    Houston, Texas
    Thanked 1,757 Times in 1,220 Posts


    This thread was closed by accident nothing done on this thread broke any rule. 2nd thread started on the same topi was closed however

    Sorry for the slip of my fingers

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~

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