What if it isn’t Fibromyalgia?
Have you heard of Chronic Inflammatory Response Syndrome (CIRS)? CIRS is an inflammatory condition affecting your immune system. Symptoms of CIRS include:
- muscle aches/cramps,
- unusual pains,
- sinus problems,
- GI/gut issues,
- joint pain,
- memory/cognitive issues,
- mood swings, and more
Sounds a lot like fibromyalgia, doesn’t it?
It should. CIRS and fibromyalgia are intimately linked.
What is Fibromyalgia?
Fibromyalgia is one of the most poorly managed conditions in all of medicine.
There are no lab tests indicating whether or not you have fibromyalgia. It can’t be detected through a physical exam. Physical imaging devices (x-ray, MRI, etc.) are not able to detect or identify fibromyalgia.
Said another way, if your lab tests, physical exam, and MRI/x-ray scans indicate you’re healthy, yet you still have unexplained pain and fatigue, you’ve got fibromyalgia.
Would you accept a cancer diagnosis if your doctors told you all your lab tests looked normal?
Would you consider yourself a celiac if your lab tests said otherwise?
Yet 2-4% of the population is given a fibromyalgia diagnosis.
When it comes to treating fibromyalgia, things don’t look any better. You’ll receive prescriptions for pain killers or antidepressants. You’ll be told to manage your stress, set a regular sleep schedule, oh, and don’t forget to exercise.
As anyone with fibromyalgia can tell you, these treatments don’t cure the illness. They may help you better cope/manage the pain. But the medications also come with other side effects you’re forced to contend with. This is not a long-term solution.
To summarize, fibromyalgia has no objective lab tests/markers to diagnose the disease. No treatment options that go beyond symptom management. And no means to accurately gauge whether the treatment is even improving your symptoms. No wonder you’re not getting any better!
What is CIRS?
Mold is not something you want inside your house. Everyone gets sick living in a home with high levels of mold. Usually, that sickness includes symptoms like nasal congestion, eye irritation, respiratory difficulties (coughing, wheezing, etc.), persistent sneezing, skin irritation, and/or headaches.
Toxic mold is even worse. Toxic molds produce mycotoxins, and mycotoxins cause seriously negative health effects in humans.
Mycotoxins make you sick. If you’re part of the population that has a specific genetic mutation (roughly 24% of us) then mycotoxins will make you really sick. Even after you’ve cleaned them from your home.
It’s this genetic mutation that differentiates mold illness from CIRS.
In those with the genetic mutation, mold morphs into another entity altogether. An entity that looks awfully similar to fibromyalgia.
CIRS prevents your body from removing the mycotoxins from your cells. As a result, your immune system continually attacks the mycotoxins, but you never get better.
You only get worse.
How Your Immune System Works
Your immune system is made up of two parts – we’ll call them A and B. Immune system A is the first line of defence against intruders, attacking through inflammation. When a cold virus first enters your system, your swollen lymph nodes and sore throat are early signs that immune system A has been activated. Immune system A also causes the swelling of your sprained ankle. The inflammation indicates that immune system A has sent white blood cells to the site of the intrusion and is attacking the intruders.
Once immune system A is activated, it sends a signal to immune system B. This part of your immune system enters the battle and takes a picture of the intruder. It then creates a more specific defence, known as an antibody, that directly attacks the intruder and removes it from your system. Immune system B keeps this antibody on hand so the next time that specific intruder enters your body it can immediately identify and remove it.
This is why you can only get viruses like the chicken pox once – your body remembers it and immediately removes it from your system. It’s also why vaccines are so effective – they provide your immune system with a copy of the virus so it can create antibodies without undergoing illness.
However, those who have the genetic mutation that leads to CIRS have a breakdown in communication between immune systems A and B. CIRS prevents immune system A from sending the signal to engage immune system B. As a result, the mycotoxins stay in your body and immune system A does not stop creating inflammation. Ever.
Over time, this ongoing inflammation causes all sorts of mysterious symptoms throughout your body.
The Fibromyalgia and CIRS connection
The most common exposure to mycotoxins occurs from mold. Studies have shown that up to 50% of buildings contain mold from previous water damage. This includes residential and commercial.
Your eyes and nose are not the most reliable way to tell if there is water damage in a building. All too often, dampness and the resulting mold growth occurs in areas you can’t see. This includes parts of your home like attics, crawl spaces, or HVAC systems.
If you have the genetic mutation and have been exposed to mold – even if it was years ago – it is highly likely your symptoms of fibromyalgia are actually CIRS.
No, not every fibromyalgia case will be CIRS. That’s why we perform objective testing for CIRS. This way, we can find out definitively if that is what you are suffering from. If your fibromyalgia is not CIRS, further investigation needs to be done to see what else may be causing your pain.
We currently don’t have studies telling us what percentage of fibromyalgia cases are CIRS. However if I was to guess, I would say more than 80%. From my professional experience, I’ve had one patient with a fibromyalgia diagnosis that didn’t end up having CIRS. This is a small and biased sample, so don’t rely on it too heavily. But the evidence is nonetheless compelling… Fibromyalgia may actually be CIRS.
How to determine if your fibromyalgia is really CIRS
Objective lab testing is how to determine if your fibromyalgia is really CIRS. But before you jump into blood tests, you can do an online screening test on the Surviving Mold website. If your eye test comes back positive and your symptom score comes back positive, odds are that you’re dealing with CIRS. In this case, I recommend you proceed with the CIRS bloodwork.
Now that you’re ready to do bloodwork, let’s chat about the weird labs that are used to identify CIRS. I’ll go over each diagnostic test below.
HLA genetic testing
This is the test to determine if you’re genetically susceptible to mold or other biotoxins. Almost a quarter of the world population is susceptible to mold and therefore to developing CIRS. While those without the genetic mutation can still develop CIRS, the likelihood is much lower.
MSH – Melanocyte Stimulating Hormone
The MSH hormone controls many other hormones. It is what is known as a regulatory neuropeptide. MSH influences both the anterior and posterior pituitary gland; which in turn influences pituitary end organs. (source) This includes hormones and glands like your thyroid, adrenals, ovaries, testes, and liver.
In CIRS, MSH is almost always low. This results in the dysfunction of the above organs and their associated hormones. MSH also regulates cytokine release. Low levels of MSH will result in chronic inflammation.
MMP9 – Matrix Metallopeptidase 9
MMP-9 is an inflammatory marker of your innate immune system. C-reactive protein is an inflammatory marker of your adaptive immune system. CIRS is an illness that affects your innate immune system. This is why markers of inflammation run by your family doc always come back looking great – they’re looking at your adaptive immune system. The problem is in your innate immune system. MMP-9 delivers inflammatory elements of your blood into subintimal spaces.
TGF beta 1 – Transforming Growth Factor Beta 1
Much like MMP-9, TGF beta 1 is an inflammatory marker specific to the innate immune system. TGF beta 1 helps to control the growth and division of cells, cell movement/motility, and apoptosis of cells.
C4a is yet another marker of inflammation. Just like the others, C4a is unique to the innate immune system. The C in C4a stands for compliment. The complement system is a group of proteins that move throughout your bloodstream to help or complement your immune system.
Other lab tests that may be out of range in CIRS
The lab tests I explained above are quite unique to CIRS. The lab tests I list below may also be out of range. If they are, you have all the more evidence to suspect CIRS.
- Anti-diuretic hormone (ADH)
- Vascular endothelial growth factor (VEGF)
- ACTH and Cortisol
- Anti-gliadin antibodies
- You have a history of exposure to a biotoxin known to cause CIRS
- You have symptoms similar to those in the peer-reviewed literature
- If you have fibromyalgia, odds are good that you have these symptoms.
- Abnormalities in blood work
- At least three abnormalities in the above blood tests
- Note that the VCS eye test can also be included as an abnormality.
- Improvement in symptoms and lab tests through treatment
Your fibromyalgia might be CIRS… Now what?
Find a practitioner well-trained in the Shoemaker Protocol. At the time of this writing, the only peer-reviewed and clinically validated approach to treating CIRS is the Shoemaker protocol. Nothing else has been studied to this extent. Lean into the research. This is what’s going to get you better. If treatment has worked for thousands of people (which it has) then odds are good it will work for you.
Mold illness (and CIRS) is becoming a hotbed for pseudo-science and natural medicine practitioners. There are all sorts of weird and wacky ways to now “diagnose” and “treat” mold illness. The problem is that research does not support any of these methods.
Now, it’s time for me to hear from you!
What would change for you if your fibro was actually CIRS?