Thursday, September 22, 2011

The Fibromyalgia Spectrum

Recently I posed a question in The Fibromyalgia Fun House, our support site on Facebook. I am looking for more information about this Fibro-monster, but not what I can pull up in a quick Google search or another strange set of statistics gathered from who knows where. I want real honest to goodness patient based information from the patients I interact with every day. The real people that have this illness. For there has got to be some commonality among us! So I asked, inquiring minds wanting to know, if you were in a happy time in your life when you first got sick with Fibromyalgia, or were you super stressed and unhappy or things were not going all that well? I got a good cross section of responses, I would say about 70 by the time it was lost in the feed. And I did get some sort of a clearer understanding about how this illness strikes us differently.

See way back when I was on Prednisone to treat strokes I quickly realized one of the amazingly good benefits of that crazy-lady inducing drug was I felt no pain! It was a cruel joke, for Fibromyalgia was all but gone, but living life on steroids was not exactly my cup of tea either. I noticed some people did not have the same anti-inflammatory response to the drug that I did, though. Now Fibromyalgia is not supposed to be an inflammation-based condition. There is no actual damage to our ligaments, tendons and muscles, right? It just feels like it? So I asked, and the response seemed to be split.* About half the people experienced total pain relief on high-dose steroids and about half did not experience any at all. Well that seemed pretty big to me and I decided there were two types of Fibromyalgia, at least. Inflammation based and non-inflammation based. For it only seemed the rational conclusion. I got a similar response about that happiness question.* There were plenty of folks that were happy in life when Fibro fanny-smacked them off their feet. They mostly seemed to be able to pinpoint an accident or illness with a definitive start date they never recovered from.

But for those that could not say, for example, "I was very happy but in June of 1992 I slipped and fell and have never recovered," it was not nearly as clear cut. I read a lot of, "It kind of snuck up on me" and "I think I have always had it" type of answers from the folks that were indeed stressed out and unhappy, generally speaking, when they got their Fibro fanny-smack. I was one of them myself. I have always been a hyper-vigilant little birdie, the dominant personality type that gets Fibromyalgia. When I got sick I had a very stressful job which I was eating, sleeping and breathing. Then I went through a sort of "hell week" and it just got worse from there. So my rational conclusion was that there was an emotional link the unhappy patients recognized but the happy patients with sudden onset did not experience as significant. Again, just a sweeping generalization, and I am sure all of this has been explored by doctors and scientists with more brains in their left pinkie than I had at the height of my cranial development. But now I feel I have witnessed two very distinct and opposing symptoms of Fibromyalgia. Either inflamed or not, and either unhappy or not. Of course the biggest question in the room is why some folks get it and others do not, given the exact same set of circumstances? Maybe that is where the genetic component comes in, which would make it three distinct types, or a strange mash up of a few at a time in each person? Who knows! But maybe if they split up the patient population based only on the experience of specific symptoms, they may realize we are as different as we are alike, and actually get somewhere with that research. But with my luck I would be the one to have the type that does not come with a cure. Touche my friends, touche.

Thanks for joining,

*No formal survey was completed, and these generalizations do not apply to every patient that responded, just the author's impression of the majority.


  1. Another interesting question would be why do women get it so much more often than men? And then there's the opposite question. Why do boys get autism far more often than girls do? I have fibro and my youngest son has autism and I don't know if they are linked, since I also have bipolar disorder and there has been some evidence found of a link between moms with mood disorders and children with autism.

    Very interesting findings that you got. I was one of the "severely depressed" people that answered your question. And anti-inflammatories give me no relief. Bummer.


  2. Were there any Women who said they thought it was after their Hysterectomy? I woke up in extreme pain-long story short I was given no pain killer right after and lay there in the Recovery room for 3 hours until they realized they did not have me hooked up and all my pain meds were soaking up the bed covers and pooling on the floor. Then I was not given any hormones-it was a total hysterectomy. After 4 months I called the Doc and was given them. Have gotten off them after 2 years. I have heard of a PAIN connection and Hormone connection and neck injury connection. Just curious:-0

  3. And a wide spectrum it is.... Still many doctors don't "believe in it"... Good to know some really do... I think mine is a combination of causes...

  4. Anonymous,

    I had a total hysterectomy last year at the age of 46. I did get pain killers in the recovery room and for weeks afterwards. My pain levels from the fibro definitely increased after both my gall bladder surgery and my hysterectomy, but I had the fibro for 20 years before the first surgery.

    I think there might be a post-surgical component to fibromyalgia. It's a trauma to the body and as anyone with fibro knows, anytime you have a physical trauma of ANY kind, you are probably going to be out of commission for at least a few days. In the case of surgery, it's more like weeks or months.

    The really funny thing with my hysterectomy is that I had no fibro pain at all for the first two weeks after the surgery. Many other women on the website I was going to for support who also had fibro said the same thing - no pain at all for two weeks and then BAM. Major pain.

    I am getting HRT and have been since my first hot flash after the surgery. I can't imagine not having it, because the hot flashes still come through and I feel like I need to jump into a snow pile, I'm so hot. Like heating up from the inside out!


  5. Okay-then-have any of you been diagnosed with having Anti-human Antibodies in your blood? I am also close to needing thyroid meds but apparently not close enough for my Doc to give me meds for it. Auto immune symptoms-Irritable bowel-allergies. I have had vague allergies all my life and take anti-histimines constantly- I think my body is having a revolution and I would like to know why. I am not taking the meds anymore-they cause me more problems than the disease. I gained 35 pounds on the Pamalor (Nortriptyline)and still can't lose the last 20. The Trazadone for sleep made me not be able to poop for a month. Had a CT scan everything. Now I move from bed to bed to couch in the night trying to find a comfortable spot because of the stiffness and pain.Anyway it feels nice to share this misery with someone who gets it :-0

  6. Another great post Leah. You're doing such a fantastic job raising awareness of Fibromyalgia.

    Keep up the good work!

  7. Good, I was so excited when I found the Fibro Bloggers Director and I was pleased to be the featured blogger one week. I think that the more blogs and websites we have out there telling our story the more chances we have to educate people on this horrendous disease and how quickly it can change our life. As more people become educated and "believe" we suffer from a very real disease, the more we will be accepted and more research money will suddenly be "found" to look for our cure.