May 12, 2009

 

Heard of Fibromyalgia?

I'm interested in fibromyalgia because I keep running into survivors who have it. It seems to be right up there with IBS (irritable bowel syndrome) and migraines--which I suffer with--as survivor health issues that there are no cures for.

Today is National Fibromyalgia Awareness Day, so I thought I'd talk about it here. The first person I ever met with fibromyalgia was a roommate I had during one of my hospital stints. She was in so much pain that I felt like I should never complain about my IBS or migraines again. Her pain was pervasive and she had had many tests before her diagnosis.

Many of us are aware that fibromyalgia involves widespread pain and fatigue. But there are some common myths around the condition. The Mayo Clinic website has a helpful article that busts nine common myths about fibromyalgia. I have summarized the first six below.
  1. Myth: Most doctors don't believe fybromyalgia is a real condition. Truth: Fibromyalgia is defined by a list of symptoms and most doctors believe these symptoms are real.
  2. Myth: Fibromyalgia damages your joints. Truth: While the pain of fibromyalgia may be severe, it does not damage your muscles, joints or bones.
  3. Myth: You look fine so there's nothing wrong with you. Truth: Friends, family and co-workers may hold this belief because they don't understand. Be willing to talk about it. Raise awareness.
  4. Myth: You got the fibromyalgia diagnosis because your doctor couldn't find anything wrong with you. Truth: Fibromyalgia is a specific diagnosis based on a specific set of criteria devleoped by The American College of Rheumatology. But, diagnosing fibromyalgia can take time because there's no single test that can confirm you have it.
  5. Myth: Fibromyalgia only causes pain. Truth: People with fibromyalgia also often experience fatigue and difficulty sleeping, headaches, sensitivity to light, dizziness, memory problems, and numbness and tingling in the arms and legs. IBS, bladder control problems and mood disorders often accompany fibromyalgia.
  6. Myth: It's no use going to the doctor because no treatments for the condition exist. Truth: There's no standard treatment for it, but the FDA has now approved one drug for treating fibromyalgia and there are many options for controlling the pain, including medications, lifestyle changes, and alternative treatments.

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Comments:
Thanks for this informative post.
 
AD: Thanks for reading!
 
Yep. All three here -- migraines, etc. Right now, though, I am working with an awesome nutritional healer/chiropractor to get my body healthy...as I have worked so many years on my mind and heart. :)
 
blisschick: Thanks for stopping by. I'm glad you've found someone you can work with to help you feel better.
 
Scary!]It's known that antidepressants can cause fibromyalgia.
I'm feeling tingling in my hands and legs, migraines, dizziness, fatigue, depression...
I believe it requires pain, isn't it?
I don't feel pain. I hope so!
I always read about it but wasn't really aware of what it really means.
 
Ana: Wow! I wish you relief on those symptoms. But, yes, I think pain is the major, overlying symptom of fibromyalgia.
 
I have fibromyalgia. Mine is comparatively mild--my pain level is pretty well a constant 2-3 on the pain scale. Sometimes it will range to a 4 or 5. The thing that I find is that the chronic low grade pain causes me to fatigue easily. I've often been accused of being lazy because of this.
I also have IBS.
I used to go to a chiropractor and get massage but I can't afford to any more.
 
Wow, this is great. I have Fibro (2 1/2 yrs), am a victim of sexual molestation and never thought about that being a contributing factor...hmmmm... (one time, in the family when I was 19), I'm 30, live in Chicagoland, and look forward to coming back to read more posts. Thanks for the helpful insights!
 
Thanks for posting about Fibro!!
 
Marj, thanks for sharing about this disease. I know it can be totally painful, as you stated and had observed.
Blessings dear one!
 
I can't help but wonder at physical problems which often go hand in hand with trauma. I think that our body stores our stress and memories and the pain is often the physical manifestation and natural result of all that we have gone through and are going through. and it can be so frustrating while trying to work on ourselves to have to deal with these physical problems too. but i think it is all connected.

thank you so much for shedding greater light on this particular diagnosis. especially helping to dispel the myth that it's not real. safe hugs!
 
What a great topic to cover! As I slipped into the black PTSD hole I, too, ended up bedridden with fibromyalgia - and IBS, CFS and a slew of other undiagnosable, 'incurable' organ dysfunctions.

It's very important for survivors to know how our minds can afffect our bodies this way because, unfortunately, the medical community doesn't get it! I saw numerous medical professionals and was on my way to the Mayo Clinic for a liver biopsy before I myself came across info on how PTSD can cause these kinds of underlying issues.

The good news is: when we heal our PTSD these problems heal, too. When I took back the power trauma stripped me of my body no longer needed to act out to get my attention. The debilitating fibro, CFS, bone, stomach, intestinal and liver problems that had persisted for 10 years disappeared as my mental state improved.

Now, how can we educate the medical community about this??? I had classic PTSD. If someone had just recognized the symptoms or asked me the right question I would have been healed so much sooner!

(Marj, please email me re: guest post: parastiesof.themind @ yahoo.com)
 
Thank you for your story. It has given me some ideas to what for so long doctors have told me is in my head I have had so many silly diagnoses from growing pains to my current one of artritis. I am 31 and have problem since I was ten. I also am a strong believer in some of what an author Louise Hay says about how states of mind can effect your physical being. I looked up what she says about fibromyalgia and she says it manefests fear and IBS is from not letting some thing go and migranes are often to do with sexual fears. Some people do nt believe in what she says but there to me seems to be a link with what we all have suffered. Thanks for helping me see from what angle my probems were coming from.
 
Michele: Thanks for adding such great comments to this discussion! I will e-mail you about the guest post at your blog. Thanks!

Kiwi: Thanks for visiting and thanks for sharing your story, too. I wish you much healing and comfort.
 
I know about the specific list of symptoms because I had it thrown at me repeatedly. I never fit enough of the criteria, though. Oddly enough, though, my IBS went away of its own accord, and my migraines and neuralgia went away with the bipolar meds. I won't complain. People too often don't seem to take fibromyalgia seriously though.
 
Immi: Nice to "see" you. I'm glad you got rid of so much pain and your IBS. My IBS seemed to go away for quite some time. Then, recently, it reared its ugly head again. Ugh!
 
Very informative. I too have run into many, many survivors that have fibromyalgia. I've always suspected there may be a link.
 
I remember being referred patients from several physicians for "stress related" symptoms. Their doctors said there was nothing medical causing their pain. But each one reported similar symptoms, similar issues and were not, imo, stressed psychologically. In time, we found an infectious disease and immunologists to work with. Lo and behold years later FM makes the grade as a real illness.

I always thing it is so important for a person to trust his or her own instincts when it comes to mind body and soul. And to find professionals that think along the same lines.
 
GA: Yeah, you and me both. Trauma has to effect more than just the mind. There's the body and the spirit; all connected.

Dr. Deb: That's the most wise, insightful comment you've ever left on my blog. Thanks for leaving it here. I appreciate your thoughts.
 
i know of some people who suffer from this and it sounds painfully debilitating thanks for the blog
 
Thank you for this...may I use the list and post it elsewhere....pass the word along...???
 
JIP: Yep, I bet we all know at least one or two folks who have this...kind of like we all know abuse survivors.

Mile 191: Yes, by all means. Thanks for passing the word along.
 
I only heard of Fibromyalgia in blogland too. Mrs K is a nurse and I also asked her about it. She said it is very painful.
 
Kahless: yeah, my IBS has been acting up a bit lately, but I am so grateful I don't have the pain of fibro. I send healing vibes out to all who do.
 
Hi! I only found you today. My therapist just left and we turned the talk from the bad r/s I just left to My Childhood (*screams*) and it appears the current grief is all about past buried trauma.

I had Fibro (we called it ME/Chronic Fatigue Syndrome) for 5 years and was bedridden. I always believed it was my soul calling for help, and now this latest r/s was my heartfinally calling for healing after 40 years.

I shall continue to read. Much love from my little girl inside to yours.
 
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