I wanted to share something with all of you. Some of you are already aware but many of my new readers may not be.
My wife suffers from something called Fibromyalgia.
Fibromyalgia is a chronic, invisible but very, very real and debilitating pain disorder.
I’m by no means an expert but I have learned a great deal from having to watch my wife suffer through this, with little or no help.
One of the biggest obstacles in treatment, in my opinion, is that many doctors don’t believe that Fibromyalgia is real. In the case of my wife, when things get so bad that I have to take her to the hospital, she is often times treated as though she is a drug seeker.
The problem is that there are no visible signs of Fibromyalgia. There is no blood work that can be done to verify a person is really suffering.
I know that many of my readers suffer from Fibromyalgia and I know you can likely relate..
Today happens to be a really, really bad day for my wife. She’s in so much pain, likely due to the changing weather and stress at home, that she can literally barely move. In fact, at times, it’s so bad that her body simply shuts off and she essentially passes out.
I want to make very clear that Fibromyalgia is very real. Simply because you can see the bruises, doesn’t make them hurt any less.
My wife is the absolute bravest person I have ever known. I truly mean that. She never complains, even when there are tears streaming down her cheeks because the pain is so bad.
I wanted to not only pay my respects to my amazing wife Lizze, but also everyone else out there suffering as well.
Fibromyalgia is similar to #Autism in the sense that it affects people in different ways. That’s so important to me that remember that.
I also wanted to remind you all that my wife blogs about this very subject, among others. Please visit her blog and learn a little about Fibromyalgia and help spread the word. 🙂
http://www.mylifebeyondlabels.com/
This was posted via WordPress for Android, courtesy of Samsungs Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct hate me.
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This is an affecting point of view on this topic. I am happy you shared your ideas and I find myself agreeing.
@social_moi I'm so sorry to hear that! I hope you get some relief soon 🙁
@Social_Moi you bet…I totally get this. It was comparable in my early 20's…
My Fibro definitely made itself known this morning. The cold wet weather does me no favours. I feel for Lizze and wish I could give her a hug (but very gentle) hug. It's awful feeling deep down like maybe you really are a fraud after being told that so many times by others. Stay strong Lizze, and Rob, stay by your lady. I've lost so many people to the pain that is Fibro…xx
If somebody would create an antibodies test or official marker to detect Fibro it would make things so much easier. Docs could instantly diagnose it and she would have that and could probably get more effective treatment- better pain meds or whatever. How frustrating. My heart really goes out to Lizze. Nothing is worse than having docs refusing to help you. My son's immunologist quit on him this week. He refuses to believe his rages are PANDAS related. Doctors should not be allowed to do things like that.
the link for your wife's blog doesn't work 🙁
I have it too, and the changing weather has been bad. The neurologist that I've been seeing for it has done a lot of research on FIbro and seems to think that there is a connect between it and Narcolepsy. I had a sleep study done, and will be seeing a sleep specialist to see what can be done. If I hear anything, will be sure to let you know, hopefully this information can help Lizzie…….
I'm so sorry Lizze is suffering so much.
I think physicians accept that the *experience* of the pain is real. But since they can't find a physical cause, they attribute it to unfixable stuff (crossed wires in the nerves, or misplaced connections — maybe a kind of like dyslexia of the nervous system). Until someone discovers where the nerves are crossed, or how to retrain the dyslexia, physicians don't have anything to fix.
Someday, everyone will issue a big apology — "Oh, we're so sorry. Now we know it was really caused by XYZ in the ABC part of the brain." But that doesn't help much now, of course. It's a huge reason to have a long-term relationship with a physician you trust and who trusts you, so you don't end up in the ER with a "drug seeker" label hanging over your head. (Because, frankly, there are a lot of those, and they are pretty good actors.)
I hope she feels better soon.
@lostandtired – I <3 her and have the UPMOST respect for too. 😉 but then you knew that