CIRS Symptoms and How EM is Related

Chronic inflammatory response syndrome (CIRS) is an illness that occurs after exposure to environmentally produced biotoxins in a person with a genetic haplotype that puts them at risk for developing the disease. In addition, CIRS involves multiple body systems. Examples of body systems include the nervous system, the circulatory system,  the respiratory system, the digestive system, or the endocrine system. One reason CIRS is often confusing to the untrained medical eye is because it affects multiple body systems and has a vast array of symptoms. CIRS symptoms are broken into thirteen “symptom clusters” that are outlined below. No person will express all of the symptoms below. Presence of symptoms within 8 or more of the 13 symptom clusters is deemed a “positive cluster analysis” virtually diagnostic of CIRS [1]. In pediatric patients, 6 of 13 positive clusters support a CIRS diagnosis.

1. Fatigue

2. Weakness, decreased assimilation of new knowledge, aches, headache, light sensitivity

3. Memory impairment, decreased word finding

4. Difficulty concentrating

5. Joint pain, morning stiffness, cramps

6. Unusual skin sensations, tingling

7. Shortness of breath, sinus congestion

8. Cough, excessive thirst, confusion

9. Appetite swings, difficulty regulating body temperature, increased frequency of urination

10. Red eyes, blurred vision, sweats/night sweats, mood swings, “ice pick” pain

11. Abdominal pain, diarrhea, numbness

12. Tearing of the eyes, feeling disoriented, a metallic taste in the mouth

13. Static shocks (ex: when turning on a light), vertigo- feeling dizzy and off-balance [2]

What other diagnoses are often seen in those eventually diagnosed with CIRS?

·      Fibromyalgia

·      Autoimmune diseases

·      Chronic fatigue syndrome (CFS)

·      Postural orthostatic tachycardia syndrome (POTS)

·      Multiple chemical sensitivity (MCS)

·      Mast cell activation syndrome (MCAS)

·      Irritable bowel syndrome (IBS)

·      Gastroesophageal reflux disease (GERD)

·      Asthma

·      Pediatric associated neuropsychiatric syndrome (PANS)

·      Psychiatric diagnoses like depression, anxiety, or PTSD [2]

Unfortunately, many people with CIRS will be given an erroneous psych diagnosis of somatization which is a fancy way to say, “it’s all in your head”. In my opinion, this is a tragedy as simple blood tests can prove a chronic inflammatory illness in which the innate immune system is activated.

Did your erythromelalgia show up before or after your CIRS?

I thought erythromelalgia was one of the first clues something was off in my body but looking back there were subtle signs much earlier such as diagnoses of Raynaud’s disease and “migraine headaches”. (I now understand that the migraines weren’t truly migraines at all but a sign of intravascular dehydration in CIRS!) In the initial years of erythromelalgia, I did not have a positive symptom cluster (AKA- I didn’t have a symptom in 8 or more of the symptom clusters above). However, as time passed the fatigue, weakness, night sweats, difficulty concentrating, cramps, shortness of breath and cough began to make their appearance. In those I have worked with who have co-existing CIRS and EM, for some EM showed up early in their illness journey, while others had EM long before CIRS symptoms reared their ugly head.  

Why should I care?

Maybe you have been diagnosed with erythromelalgia (EM), postural orthostatic tachycardia syndrome (POTS), multiple chemical sensitivity (MCS), mast cell activation syndrome (MCAS), fibromyalgia or a plethora of other illnesses. Maybe you aren’t quite sure if the labels you’ve been given fit, but you do know one thing- your health has gone missing. Maybe your symptoms leave medical providers scratching their heads and saying that all of your bloodwork looks fine. Maybe you grew tired of justifying yourself and your multiple symptoms to doctors that seemed to disbelieve you. Maybe you gave up on the medical establishment completely and sought relief elsewhere. Maybe you feel irreparably broken and alone in your quest for healing. If you hear nothing else- hear this- there is hope for your healing. For when all the king’s horses and all the kings men couldn’t put me back together again, it was Dr. Shoemaker’s Treatment Protocol that led to the reclamation of my health- not to mention my ability to walk! The Mayo Clinic could only strive for symptomatic relief, but Dr Shoemaker’s protocol got at my root cause sending my EM soaring into complete remission. Research is currently underway to share what I discovered with the wider medical community- a connection between erythromelalgia and CIRS. I believe every person challenged with EM- or other unexplained or under-treated symptoms- should seek out a consult with a CIRS savvy medical provider. If you’ve seen multiple physicians and feel as if you’ve been discarded to the back of the heap, I am here to tell you there is hope for your healing… lots of it! Let my story be proof of that.

You can read more about my journey as a medical provider hellbent on healing her own erythromelalgia here.

Read about healing my chronic inflammatory response syndrome (CIRS) and how that connects to EM here.

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References

[1] R. Shoemaker, K. Johnson, J. Lysander, Y. Berry, M. Dooley, R. James and S. McMahon, "Diagnostic Process for Chronic Inflammatory Response Syndrome (CIRS): A Consensus Statement Report of the Consensus Committee of Surviving Mold," Internal Medicine Review, vol. 4, no. 5, pp. 1-47., 2018.

[2] R. Shoemaker, Proficiency Partners Lecture, 2018.