View Full Version : My aunt and Fibro

09-29-2011, 02:52 PM
I here people talk about fibromyalgia all the time but I guess I only know that one of the ways you find out you have it is those points? Anywho, I saw my aunt whom I love very much but hardly ever see today. I always forget that she found out like a few years ago that she has fibro. Is it an AI disease too? We seriously talked for like 2 hours over lunch today and it was like the most amazing thing ever. I mean I LOVE everyone here so much, but I have never had an actual face to face convo with someone who knew what I was saying. Twas amazing. And to have it be my aunt! When we talked about how much pain we have in our legs she said that she thought that was weird, because she said that she always thought it was weird that most of her pain was in her legs but thats not a usual place for the most pain with fibro? I talked to her about my brother too. It was just a really nice day. We went to Steak n Shake and then she took me shopping. I haven't seen her or anyone for that matter from my dads family since we haven't been talking. This was my early birthday present =) It was a good one.

09-29-2011, 04:56 PM
Fibro isn't an autoimmune disease. It's actually not a disease at all, but a disorder, because they don't know what causes it. It's thought to possibly caused by an infection, or a physical or emotional trauma, or genetics.
Fibro has pain all over the body, but there are pressure points, which is how they diagnose fibromyalgia, because there can be pain anywhere, but these points cause extra tenderness when touched.
Fibro is kind of a bit like Lupus, in that it can cause full body pain all of the time, but your immune system isn't attacking itself. So there's really nothing physically wrong with your body, but there's widespread chronic pain and fatigue.
Most of my pain with fibro is in my joints, (especially my knees), my grandmother has/had her pain in her left arm, other people have specific areas which effect them worse than the all over pain.

The points are on the back of your head, neck, knees, hips, uhh... a few others. I'll link a picture to the spots:

Anyways, i'm glad that you have someone you can talk to face to face about this kind of stuff who understands :) Good to hear you had a nice prebirthday!

09-29-2011, 05:43 PM
She kept refering to it as an AI disease. I dunno lol when talking today one of the MANY things we seemed to find we shared was an excessive thirst. Mine obviously brought on by terrible dry mouth. I'm not sure about hers. I talked about Sjogrens with her though. She said none of the medicine she takes seems to help her all the time with her pain.

09-29-2011, 05:51 PM
While it is correct that Fibro is not an AI disease there are several studies going on now trying to link it into the AI diseases since it is so close to AI disease that many people are originally diagnosed with Fibro before being diagnosed with an AI disease. As Elo said there are questions about how how it is contracted, possibly by infection or trauma, although the same questions are being asked about how Lupus and other AI diseases are contracted.

The key symptoms of Fibro are

Pain all over
Brain fog
Trouble sleeping
Exercise difficulties
Irritable bowel
Jaw pain
Multiple sensitivities

There can be many, many more symptoms however. One of the most uncomfortable for me is when my skin hurts. Susie and I have spoken several times about the fact that there are days that the fibro is worse than the Lupus. There was a study done that appears to show that people with Lupus and Fibro tend to have a worse case of both.

No matter what it is called or what it does there is always a comfort in finding someone that understands you. I am so glad that you have that. Keep in touch with her. Kindred spirits should never be lost

09-29-2011, 06:23 PM
She's not big on the internet so I doubt she goes around seeing things like "but you don't look sick" and such websites but she kept saying I'm sick of people saying how great I look when I feel like crap and hurt. We talked about how even those closest to us don't understand. It was so nice. I know who I'll be calling next time I'm having a bad lupus day lol

What do you mean by your skin hurts? I've noticed lately that when people even jokingly poke me it feels like I'm being punched. I cant tell you whether its skin, muscle, or bone. The thing is that just sitting around or doing normal things I'm fine, but if I bump into things or am messing around with my friends it hurts really bad in certain spots. Is it what you mean or is that just completely different? lol its not an all the time problem either so I'm not that worried about it its my boyfriend who is because he said he was barely touching me last time and it REALLY hurt.

Anywho, thank you for the info =)

09-29-2011, 06:51 PM
I meant exactly what it sounds like. Sometimes there are parts of my skin that hurts to the touch. Be it the touch of a couch or a hand. It is like when you are really sunburned and someone touches you. There are days I feel like that. It is then that I know that my fibro is rearing its ugly head that day. Yes my muscles hurt and I feel like i have the flu. So many of the symptoms overlap that sometimes you don't know where one ends and the other begins.

09-29-2011, 07:57 PM
i will add a few things i have found out about fibro.
i hope it helps.

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.

09-30-2011, 04:48 AM
Ahh too much for my tired brain lol I will have to look at all of that again later. I wonder how anyone ever tells stuff like this apart! So many things are the same. It will be my job to be able to tell the difference one day lol

09-30-2011, 04:58 AM
Ahh too much for my tired brain lol I will have to look at all of that again later. I wonder how anyone ever tells stuff like this apart! So many things are the same. It will be my job to be able to tell the difference one day lol

the second last paragraph helps destinguish between sle and fibro.

10-01-2011, 05:48 PM
I found this discussion interesting because almost all of my pain is in my legs and I keep hearing most people experience pain all over their body.

10-01-2011, 06:16 PM
I found this discussion interesting because almost all of my pain is in my legs and I keep hearing most people experience pain all over their body.

I have certain places that are worse then others when my Lupus is flaring. My knees kill me, my thumb and index fingers are really bad and then my hands and feet swell so it changes everything. The single most important thing to remember about Lupus is:

It is different with everyone because it depends on what part of the body is being attacked.

10-02-2011, 11:15 AM
It's true, I have pain in my ENTIRE body. Starts from the jaw and goes all the way to my feet. It is at it's worst in the morning when I wake up, I am so stiff it hurts to stretch and try to stand up. My rheum thinks I have Fibro instead of RA, but she still has Lupus in the back of her mind as well. I personally think I have an overlap of both because of my blood tests and because of how I feel and what goes on with me. It is a horrible disorder, you feel so incredibly sick, all the time. It's as if you have the flu 24/7 and it will never go away, maybe just ease a bit but that is all.