Interesting responses to my information post regarding research into Fibromyalgia.

UPDATE:

Interesting responses to my information post regarding research into Fibromyalgia. I had hoped it would provide hope to many struggling with this difficult disease. I also hoped that I had made clear that we are NOT to blame. If that support was not clear, or felt somehow critical and triggering, let me say it again. You are not to blame for being ill. I also know, at nearly 80, that pain can make people say unkind things. I am not offended.

I was going to post the research studies but instead, I encourage anyone interested to look up the research for themselves. There is more being done than you might think. Personally, having been involved in studies and to keep some of the noise out, I look at NIH, Mayo Clinic, Cleveland Clinic and Massachusetts General research only. There are many others available. I’m not sure how reputable they might be. Studies are difficult to read. If you find it’s all too technical, go to the end where the results are posted.

I am a recent member of the group and am alarmed at the large number of medications being taken by fibromyalgia sufferers, largely on a trial and error basis. Just because there is no test for an illness doesn’t mean it’s not real and all of you know that to be true. I am sorry that the diagnosis FIBROMYALGIA is even made, as it stops health professionals from looking for other causes of many symptoms described by the group members. Personally, I refuse the diagnosis of “chronic” pain and insist it be described as “acute” until a reason for it is found.

So far, fibromyalgia, does not appear to be autoimmune. That is simply because it doesn’t show positive on the markers presently available. More convincing is that it does not respond to steroids as most autoimmune inflammatory conditions do.

Definitely, the joint pain is likely due to osteoarthritis. Extra weight exacerbates, but does not cause it!!! Remember that. Thin people get osteoarthritis. To be sure there are lots of reasons to carry less weight. It reduces pain on joints, it reduces heart and lung disease( by reducing inflammation in the body). It reduces blood pressure, it reduces chances of getting some cancers ( again due to lower inflammation). It makes movement easier. There are more. But being overweight is NOT the cause of every illness. If that were the case, pain, heart disease, lung disease, cancer etc etc would only strike those with BMIs greater than ? We know that is not true!!!

So, not auto immune, but surely has symptoms that extend past joint pain. Let me be clear here. I am not a doctor. I was a nurse. I spent 50 years working in palliative care and pain management. That’s how I know that the “high pain tolerance” is a myth. Being able to cope with pain isn’t a badge of honour. It’s a sign that you have had a lot of it and have had to develop coping strategies because nothing else has helped!!!!

Recently, I’ve been reading about studies that might link the non pain symptoms ( skin sensitivity, burning, itching, swelling, fatigue, nausea, blurred vision and more) to a condition known a Mast Cell Activation Syndrome (MCAS). Pain and stress can activate mast cells causing a vicious cycle of neuroinflammation.

Could it be this simple? I don’t know.

Is it worth a discussion with your doctors? I think so!