View Full Version : Close to a diagnosis

03-07-2012, 03:46 PM
Hi everyone,

I have my doctor's appointment yesterday because I could just not take my joint pain, fatigue or headaches anymore. (Mind you, I'm an active 24 yr old female. I actually teach zumba 2x a week.)

So the doctor said I most likely have Fibromyalgia or mixed connective tissue disease due to my symptoms, but we are going to do bloodwork to check to see if anything comes back abnormal. They'll call me when they get the results in about 3-4 days. I will now be taking medication for my joint pain and to help me sleep at night since I've had disrupted sleep for a while. It just feels so weird to be prescribed medicine since I'm used to being "healthy", or at least I thought I was. LOL

I thought of myself to be a pretty laidback person who doesn't let things get the best of me which is weird why I get tension headaches. Anyway, does anybody else get headaches and joint pain out of the blue regardless how much you work out or how little you stress about things?


03-07-2012, 09:26 PM
i will add some information about fibromyalgia.
i suffer from it too, as do many of us.

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.

Ellie Hansen
03-08-2012, 06:12 AM
Hi Krystie,

I am newly diagnosed, and I am also a 24 year old female who is active. I love zumba too by the way! I was thinking the same things for a long time - why all the joint pain and tension headaches? I'm an event planner which can be a stressful job, but it never really affected me physically before. My doctor thought I had lyme disease for a while and put me on antibiotics but they symptoms didn't go away and it was almost a year before he diagnosed me with SLE and Rheumatoid arthritis (Dec 2011). I've always considered myself "healthy" and my entire life, I never went to the doctor or took medications for anything until all these symptoms randomly started. It's frustrating and kind of scary to think how and why this autoimmune stuff happens. Why do people seem to get it randomly? It's not like there's a gene for it or necessarily any predisposition. I always prided myself on how I had been so healthy my whole life, eat really healthy, am in good shape, but then out of the blue I'm suddenly being told I have chronic lyme (which was now confirmed to actually be SLE and RA), and I'm taking all kinds of meds and posting on a lupus forum.

You definitely are not alone!

03-08-2012, 11:11 PM
I know exactly what you mean. I was a health nut when I was a young mother. I had homebirths, breastfed five babies and cooked very nutritious meals for my family. I never took any meds and while I was never athletic, I was always an active, busy Mom.
I started noticing odd symptoms at around the age of 35, but nothing was very debilitating until I was diagnosed with MCTD at age 47. Now that I look back, I think that I had a few mild symptoms as early as my teens.
Ellie, I'm convinced that there is a genetic predisposition to AI diseases. There have been several threads here and at the Sjogren's site about it. My mother and my aunt had many of the symptoms that I have, but were never diagnosed. I had an uncle with Parkinson's and his daughter had MS. My great-aunts and uncles also had similar symptoms. Now, I'm seeing AI symptoms show up in my adult daughters - one has Celiac and poly-cystic ovarian syndrome, another has IBS, GERD and asthma and another just had her third surgery for endometriosis and ovarian cysts. Autoimmune diseases just seem to run in our family.
There are a lot of us here at WHL who have noticed this tendency.

03-09-2012, 12:50 PM
Thank you so much for your responses! Thank you, Steve, that was very informative & I read I formation that I had not heard before so thank you so much!!
Ellie, I know exactly what you mean! I had been a health but by limiting the junk food I'd eat & by even going so far as to exercise every single day! (Which actually aggravated my arthritis because my knees KILL me now!)
Marla, I know that what you're saying about AI being hereditary is true because my mom was diagnosed with AI, however they are still tryin to pinpoint which one exactly it is. I have two cousins who have SLE. One sadly passed several years ago & one is going through dialysis. Also, my PCP said that it's not necessarily that disease that is hereditary but it's an autoimmune deficiency that can be passed on through DNA. But I know what you mean how puzzling it is that you think you're doin the right thing for your body & it just slows you down & hits you all of a sudden. I hope you feel better! :-D