View Full Version : Now fibro

04-05-2012, 09:19 AM
Apparently I have been dx'd with fibro, which is news to me, because my rheum didn't tell me at my last appointment. I was looking for an old test result online when I came across the part of my file that lists dx's and what not and it says "fibromyalgia and anxiety" 3-31-12. One more reason I need a new rheum. I guess she didn't seem to think it was important to let me know that or tell me what to do for it.

04-05-2012, 11:00 AM
Huh! That's a weird one. Try to just keep doing what your doing and maybe ask next time you see her or a new doctor.

04-05-2012, 12:13 PM
Wow! Fibromyalgia is a big diagnosis to miss telling you about. I have it and it's no fun.

04-05-2012, 02:35 PM
If you want to talk about the Fibro diagnosis, I have it too so you can PM me any time.

04-05-2012, 08:45 PM
welcome to the fibro family.

strange that your doc didnt think of telling you.

04-05-2012, 08:45 PM
Does it cause swelling? Thats why I've gone to see her twice within the past month or so and she keeps saying nothings wrong your not flaring but I'm still swollen and sore and tired. Then I see that on my online files and was so mad just because she didn't even tell me thats what she thought was going on or what to do about it.

04-05-2012, 09:07 PM
hopefully this information will help.

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.

04-05-2012, 09:35 PM
That was so helpful! I knew just a little bit about fibro because I have had things come up about it when reading about lupus but when I did a search today everything I found said the same generic stuff. Thank you!

04-06-2012, 04:13 PM
This looks like one more good reason to fire that rheumy and find one who will be honest with you.

04-06-2012, 04:24 PM
I know. I just don't see how thats something that would slip your mind. It doesn't make sense.

04-06-2012, 04:29 PM
Perhaps she's one of those docs who doesn't consider fibro a "real" disease?

04-06-2012, 05:36 PM
Who knows. I know last time I saw her she just kept saying "you need to exercise more and your depressed(I'm not)" and I guess that was her way of saying "I think you have fibro but I'm not actually going to say that I'm just going to make it seem like I think there's nothing wrong with you right now and make you mad, and then make you more mad by letting you find out on your own that I've dx'd you with fibro". She knows if she makes me stress out enough it will make me sicker and make me keep coming back; Its a conspiracy! JK lol

04-06-2012, 08:36 PM
Sometimes I feel worse from the fibro than the Lupus (when I am not flaring that is). It can be a TOUGH one

04-07-2012, 12:12 PM
Perhaps she's one of those docs who doesn't consider fibro a "real" disease?

Any doctor who still tries to pull that should be fired immediately. Fibro has been proven to be real and it can be devastating and a life ruiner just like our autoimmune diseases.

My rheum also tells me to exercise and I've found that she is right. The less I move the worse I feel. But at the same time it also hurts to move, and my body just tightens up so badly I can barely bend. Moving and stretching are so important for Fibro, as much as it kills and exhausts you to do it.

04-07-2012, 03:50 PM
I try to get in a little exercise and it just makes me so sore and it makes me unmotivated to do more.

04-09-2012, 09:25 AM
I try to get in a little exercise and it just makes me so sore and it makes me unmotivated to do more.

Yep I really hear you, which is why I am VERY grateful that I have a dog, she is my main motivator.

04-09-2012, 01:00 PM
I have a 6 year old brother lol I think my mom makes him ask me to go on walks because she knows I can't say no to him lol and I know that there is no way he wants me to go on walks with him on his own ha