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Thread: What next?

  1. #21
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    Quote Originally Posted by Tocki View Post
    Peridot, thank you for that information. I will keep you all updated on what's going on with me. Wish me luck in getting the referral!
    Tocki, your welcome mate and i wish you all the best with your referal as it needs doing and we'll wait to hear what's said.

    Terry xxxx

  2. #22
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    i have both lupus and fibro.

    i have looked for information on fibro.
    some of the best sites i found are:
    http://www.fibromyalgia-symptoms.org/
    http://www.myalgia.com/index.html
    http://www.fmscommunity.org/index.htm

    i have paraphrased notes for my own use.

    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.

    i hope this makes sence to you.
    feel free to pm me if you want to discuss anything further.

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

    BonusMom (06-21-2011), tgal (06-17-2011), Tocki (06-20-2011), wash&wag (06-23-2011)

  4. #23
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    Steve, thank you for the information. I will continue to educate myself on both diseases. In the meantime guess what...I got my rhuemy referral! Finally, i will see the rhuemy August first. What should I expect and what other questions should I be asking at this appointment?

  5. #24
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    take the time to write a list of your symptoms.
    lupus can be controlled with medication.
    fibro is harder to controll. the usual treatment is pain meds and something for the swelling.
    remember fibro will not kill you, it just makes life uncomfortable.

    at the moment my lupus is being wonderfully controlled.
    but my fibro still kepps me on the disability pension.

  6. The Following 2 Users Say Thank You to steve.b For This Useful Post:

    lovedbyHim (06-24-2011), Peridot20_Gem (06-21-2011)

  7. #25
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    Hi Tocki,

    I'm so pleased you've got your referal, mines due also some time in August.

    You can't beat reading up about your conditions and Lupus besides as it will educate you into what symptoms you may have and it will make you aware of them, if it happens and steve's suggested the correct things before you go.

    Luv Terry xxx

  8. #26
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    Tocki-welcome to the WHL family!

    Linda-you gave some excellent suggestions for anyone with cog fog or slow learners or what-have-you, can benefit from. Thank you for posting your tips. I know that being a teacher, you've learned many tricks of the trade, but being a parent of a special needs child you've mastered some of the things that us with cog fog are finding we need some extra care with. I can't tell you how much I appreciate this, both for myself, but for my BonusDaughter who has some retention problems. Xoxoxo to you!!!!

  9. #27
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    Steve-excellent post with great links about lupus and fibro. Great name, too! (Eldest son is a Steven and he absolutely ROCKS!).

    FWIW, I have posting on a BBerry and the darn rollerball isn't working so I can't "Reply with Quote" or go back and edit my posts......eventually, I go to my desktop and upload pix and make corrections, but I don't catch them all....sorry.

  10. #28
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    Hi Tocki,

    How are you keeping mate plus feeling in general...the quicker your appointment arrives the better i bet you can't wait yourself to see what happens.

    Love Terry xxx

  11. #29
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    Hey Terry! I am hanging in there, trying to manage my pain and you're right, I can't wait for my appointment to get here. Hope all is well with you also :0)

  12. #30
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    Hi Toki, I am off work for a few days from the fibromyalgia pain and new meds making me too tired to drive. Because of this I have been able to read more posts. I have no advice for you except to keep strong. The Lupus symptoms ha been rough for me but seemed more manageable than the fibro spasms & pain. Steve is right, pain meds are what helplp us to cope. Pain has a way of wearing at you emotionally. I wish you the best at your appointment.

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