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Post by Amanda on Apr 22, 2009 18:56:51 GMT -5
I hope this hasn't been addressed in another thread. I did a search and found no similar posts. This is my first time starting a thread, woohoo!
I've read a couple articles that suggest there may be a correlation between women with endo who also suffer from fibromyalgia. I don't know if that's necessarily the case, but was wondering if any of the ladies here have been diagnosed or suspect fibromyalgia.
Many of the symptoms are very similar to other conditions and the only way to diagnose fibromyalgia is through a test that involves applying pressure at 18 designated trigger points. A patient must feel pain at 11 of those 18 points for fibromyalgia to be considered.
I had an appointment with my GP this afternoon, and after discussing all the symptoms and problems I'm having, fibromyalgia may be a concern. I have to go back for a full work up next Tuesday so that we can talk more about the symptoms and do the 18 point test. Hopefully all goes well!
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Post by eyesofblue on May 21, 2009 10:37:11 GMT -5
Good luck!
I haven't been diagnosed but I suspect I have fibromyalgia. I have been dx w/ costochondritis...which is an inflammation of the rib cartilage. Can make you feel like you are having a heart attack sometimes. Spots on chest are tender to the touch. Not fun.
Once I get thru this endo hell, I would like to discuss w/ a physician the possibility of me having an auto-immune condition. I highly suspect so: lupus, RA...I know many consider endo to be an auto-immune disorder.
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Post by KSA on May 21, 2009 11:00:44 GMT -5
Eyesofblue I have read that women with Endo have a higher percentage of having Lupus then non Endo women. I read the same of fibromyalgia. Our immune system is out of whack. Do you have alot of allergies? Sun, drug, food? Also some but not all Lupus patients have a butterfly red mark on nose and cheeks. A blood test along with many other tests however is the only sure way to diagnose the illness. Its another disease like Endo that is very hard to diagnose. I have been thru alot with allergies and am a Stage 4 Endo patient a Lupus testing may be given to me as well. I am reading a great book that you may be interested in picking up a entire chapter is devoted to our immune systems and the difference in non Endo women. Endometriosis : The Complete Reference for Taking Charge of Your Health by Mary Lou Ballweg and Mary Lou Ballweg Goodluck findarticles.com/p/articles/mi_m0CYD/is_7_37/ai_84875727/ A reference to the lupus, endo and fibromyalgia 2002 study however new research does exsist but this was a quick search
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Post by JC on Jun 1, 2009 14:44:31 GMT -5
costochondritis!! I have that too! I get these random STABS in my rib cage. It sucks cause you'll just be sitting and minding your own business then all of a sudden, WHAM!! you get wacked! I wondered about fibromyalgia but I swore to myself that those pains are all just in my head. I get random stabs all over the place and I just ignore them. I refuse to be diagnosed with fibromyalgia. lol
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Post by tnmommy on Jun 7, 2009 20:34:54 GMT -5
I am shocked to learn, as of June 1st, that I might have endometriosis and/or uterine fibroids. One month of the bad bc pills that stop ovulation and then I go back to discuss the possibility of lap surgery. I also have fibromyalgia and IBS, or suspected IBS, which I will just be so po'ed if I find out that it's endo on my intestines. But fibromyalgia is in your head, technically, as there is no actual physical reason for the pain. I had juvenile RA which is in remission, but there are theories that long term, chronic pain like that makes the brain more sensitive to sensations, leading to the fibro pain.
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Post by Amanda on Jun 7, 2009 22:43:27 GMT -5
Tnmommy- Where did you get the idea that Fibromyalgia is just all in your head? I've never heard that before. I've always been told that is a central nervous system problem. My mother and several friends have it and I've seen the kind of real pain they endure and its definitely not imaginary.
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Post by JC on Jun 9, 2009 11:23:12 GMT -5
That "all in your head" idea is the common opinion doctors have about fibromyalgia. I remember working in the ER and anytime a woman came in with this was pretty much never taken seriously; which I'm starting to realize that any women's health problem was usually never taken seriously by most doctors. (I'm sure some of you guys have gotten some pretty ill treatment from ER docs). I used to feel bad for women who came in with it because I know it can get painful but doctors usually think its a big joke. It's really sad. I think this opinion comes from the observation that any woman who came in with fibromyalgia also had some type of psych history on their chart ranging from chronic anxiety/depression to bipolor disorder. So I think since doctors see this connection so much, it gave fibromyalgia a bad rap.
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Post by JC on Jun 9, 2009 11:33:29 GMT -5
Also exacerbations of fibromyalgia are usually connected to a person's current mental state. The higher the stress level, the pains seem to worsen. This is also why people say this is all in your head. Plus treatments for fibromyalgia are sometimes anti-depressants or anti-anxiety meds. That doesn't help with the "all-in-your-head" reputation. Personally, I've felt a lot of those fibromyalgia pains and they are definitely real. I've also noticed though that the pains are worse when I'm stressed out or upset. So who knows....
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Post by omaklackey on Jun 9, 2009 13:57:57 GMT -5
hmmm... now I have to reasearch this! I believe Fibromyalgia is 'in your head' It is a physical pain being caused by who knows what in your brain telling your body its in pain. Saying its 'in your head' isn't to say it isn't very, very real pain. Just that it is something in the brain that is out of whack. So I'll go search and see what else I can find. I also read in the Endometrosis the complete reference to your health that endo women are more susceptible to it though.
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Post by omaklackey on Jun 9, 2009 14:00:29 GMT -5
okay direct from the National fibromyalgia website: "Fibromyalgia (pronounced fy-bro-my-AL-ja) is a common and complex chronic pain disorder that affects people physically, mentally and socially. Fibromyalgia is a syndrome rather than a disease. Unlike a disease, which is a medical condition with a specific cause or causes and recognizable signs and symptoms, a syndrome is a collection of signs, symptoms, and medical problems that tend to occur together but are not related to a specific, identifiable cause."
I can't begin to tell you what this means though :-(
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Post by omaklackey on Jun 9, 2009 14:03:32 GMT -5
Also found this from the same website. It makes a little more sense...
"While the underlying cause or causes of FM still remain a mystery, new research findings continue to bring us closer to understanding the basic mechanisms of fibromyalgia. Most researchers agree that FM is a disorder of central processing with neuroendocrine/neurotransmitter dysregulation. The FM patient experiences pain amplification due to abnormal sensory processing in the central nervous system. An increasing number of scientific studies now show multiple physiological abnormalities in the FM patient, including: increased levels of substance P in the spinal cord, low levels of blood flow to the thalamus region of the brain, HPA axis hypofunction, low levels of serotonin and tryptophan and abnormalities in cytokine function."
If anyone is curious the website is the National Fibromyalgia association
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Post by KSA on Jun 9, 2009 19:15:50 GMT -5
Jenaya my sister works at a hopspital and has told me the same thing. Docs roll eyes when women come in about pain and fibromyalgia. Very sad but docs just are not buying that it is a real isssue. ER docs well they just want to get you out the door.
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Post by JC on Jun 10, 2009 11:26:39 GMT -5
Jenaya my sister works at a hopspital and has told me the same thing. Docs roll eyes when women come in about pain and fibromyalgia. Very sad but docs just are not buying that it is a real isssue. ER docs well they just want to get you out the door. Yeah it's definitely an eye roller. But when you deal with people getting their limbs ripped off, getting their face shot off, or people who have heart attacks and strokes, it's really really hard to take pain seriously when there's no obvious cause for it. The overall frustration with working in the ER is people who come in with unmanaged chronic issues rather than taking control and managing it with their regular doctors. And what's even more frustrating is when people's regular doctors refer their patients to the ER for treatment rather than managing their patients and their chronic issues. The ER is for emergencies, not for managing chronic pain. It's a constant battle between primary care doctors and ER doctors and unfortunately the people who suffer the most are the patients who are caught in the middle of this medical ping pong game.
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Post by jennteacher on Jul 22, 2009 12:56:14 GMT -5
I've always gotten the impression from doctors that I've seen that Fibromyalgia and IBS are just terms that they use for diseases that they aren't sure about. I have endo, but I've just recently been diagnosed with Lupus as well. I don't know much about Lupus yet (this just happened last week), but I wonder if Lupus falls into this "all in your head" category as well. There seems to be absolutely no real reason for any of my symptoms. Am I about to head down another road where people think I'm just whiney and weak?
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Post by Amanda on Jul 22, 2009 13:48:08 GMT -5
I think that when doctors or the medical community say that there's no real reason for the symptoms people are experiencing, that just means that nobody has figured it out yet. Our bodies are far more advanced than a lot of people realize and I think that everything that our bodies feel and do are for a reason.
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