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IS MAST CELL ACTIVATION AN EQUIVALENT?

Discussion in 'General Discussion Subforum' started by Lstk, Aug 17, 2019.

  1. Lstk

    Lstk Newcomer

    I have a long history of multiple diagnosis that I believe to be Tms. I have had fibromyalgia, multiple digestive disorders and pains.
    I was recently diagnosed with dermAtographism and mast cell activation at UCSF. I take meds for this that help, but still wish for better health. While I unquestionably fit the normal type for tms, I have not heard others discuss mast cell activation as an equivalent. I would like to give myself recovery a second try, but I am unsure where and if MCAD fits into this scenario.
    I would love any guidance in this area.
    Ty
    Ls
     
  2. Dorado

    Dorado Beloved Grand Eagle

    Yes, MCAD - which I have had bouts of as an Ehlers-Danlos patient (many of us are prone to MCAD) - can be activated or worsened by stress in some people. There absolutely is a mind-body component.

    This is scientifically documented:
    Link: https://www.ncbi.nlm.nih.gov/pubmed/16110169 (Mast cell activation by stress. - PubMed - NCBI)

    Stress has been noted as a trigger in MCAD on MCAD sites:
    Links:
    - https://tmsforacure.org/symptoms/symptoms-and-triggers-of-mast-cell-activation/ (Symptoms and Triggers of Mast Cell Activation - TMS - The Mastocytosis Society)
    - https://tmsforacure.org/community/helpful-hints-living-symptoms-mast-cell-disorders-shared-patients-living-disorders-stress-management/ (Helpful hints for living with the symptoms of mast cell disorders shared by patients living with these disorders - Stress Management - TMS - The Mastocytosis Society)
     
    Last edited: Aug 17, 2019
  3. Lstk

    Lstk Newcomer

    Thank you for responding Dorado. I do not have EDS, but do have MCAD. I take quite a few medications for it. In such a case, is it realistic to follow the tms plan that includes stopping medications and taking on activities ( eating most foods for me) as the dr. Sarno books outline? I’m not clear on how to proceed and 100% Any resources would be welcomed. I do know about tmsforacure.org. Ty, but I am confused about how to get a road map for something with medications involved.
    Ty
     
  4. Dorado

    Dorado Beloved Grand Eagle

    Good question! Bear with me here - I'm quite wordy.

    I can't advise you to completely discontinue any medications for conditions involving any type of allergic sensitivities. It would be totally amiss for me to tell a MCAD patient who experiences anaphylaxis to stop taking their medications (if that is the case, do NOT do it!). How severe are the MCAD symptoms? If we're talking about non-life threatening issues like your dermatographia, there may more flexibility to experiment here. Regardless, there is no harm in incorporating some emotional work into your current treatment plan, especially for someone who recognizes that they fit the TMS personality profile. After all, it's called the mind-body connection for a reason - the mind affects the body and vice versa. Don't feel bad about staying on your medications for now and working with an understanding doctor over time to see if you can reduce or completely stop them.

    You are absolutely correct that fibromyalgia, digestive issues, etc. can be caused by emotions, and while I'm not a doctor, I am willing to bet that your MCAD has a strong mind-body component based on your history. For what it's worth, I only get noticeable dermatographia, hives, and other MCAD symptoms when I'm stressed out. So does the legendary Mariah Carey, which I've noted here: http://www.tmswiki.org/forum/threads/mariah-careys-stress-related-health-issues.17967/ (Mariah Carey's stress-related health issues)

    Ultimately, it's important to work with doctors who understand that the mind affects the body - you must also recognize this and truly believe it. Nearly everything has a mind-body component. From there, you can monitor your progress. There are some individuals who have seen everything from MCAD, seasonal allergies, herpes outbreaks, severe gout attacks, psoriasis, etc. decrease or go into what appears to be complete remission when they do the emotional work. It depends on the unique individual. And yes, this is possible with real conditions.

    As some examples, there are people who have overcome certain allergies (e.g., food, seasonal, etc.) and multiple chemical sensitivity with emotional work, which has been well-documented on TMS Wiki. Herpes is a very real condition with no cure just yet, but I've heard of people who are only vulnerable to outbreaks when they're under extremely intense levels of stress; when they are emotionally balanced, the virus seems to lie dormant with no other major triggers. Some are more prone to getting sick with the flu, strep throat, colds, UTIs, etc. when they're dealing with intense emotions because their immune systems are more sensitive. Someone with two copies of the APOE4 gene is SIGNIFICANTLY more likely to develop Alzheimer's if they suffer through decades of extreme depression (which is one of the many risk factors for Alzheimer's) than someone with two copies of the APOE2 gene.

    I've seen some people FULLY overcome postural orthostatic tachycardia syndrome (POTS) by taking a TMS approach, while other people with true and more extreme nerve damage may not be able benefit quite as much (my old biofeedback therapist worked with a man who had true nerve damage in his hands from a series of repeated accidents, and breathing exercises did help him reduce his Raynaud's and autonomic overactivity by about 30%!). Even HIV/AIDS patients are more likely to die when they are depressed, because depression further taxes their already compromised immune systems.

    Personally, as an Ehlers-Danlos patient, I am predisposed to dysautonomia, mast cell issues, joint pain, etc. That's a real condition. But it is quite clear to me and my doctors that emotional stress triggers severe symptoms for me, such as Raynaud's, blood pooling, horrific nerve pain, nonstop sweating, wrinkled fingertips, dermatographia, negative reactions to numerous chemicals and substances such as alcohol and medications, etc. I strongly believe that because Ehlers-Danlos is a risk factor for an overactive autonomic nervous system, I go into fight-or-flight mode easily, and intense emotional stress causes my body to experience an endless list of bizarre symptoms. If I'm not under emotional stress, I don't have to worry whatsoever about MANY of those symptoms - they simply don't exist or at least super mild when I'm emotionally balanced. When I recovered from several traumatic events, I was able to drink alcohol, experiment with medicinal cannabis, swim in cold water, etc. without months of these symptoms. All that said, I believe that you would benefit from doing the emotional work, but I want you to be safe and work with a doctor who understands the mind-body connection.

    Below is a short expert from great article - you'll notice that it says MCAD may be caused by stress for some people, depending on unique variables and epigenetics:
    CONTINUE READING HERE: http://www.mastcelldisease.com/mcad-epigenetics-stress-can-trigger-mast-cells-impact-immune-system/ (MCAD & Epigenetics: How Stress Can Trigger Our Mast Cells & Impact Our Immune System | | MastCellDisease.com)
     
    Last edited: Aug 18, 2019

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