Health Journey & CPTSD

[dollyvee]

Kizzie asked me to write about my journey with physical symptoms and trauma a few years ago and I politely declined. I have a feeling like a lot would like to take the physical symptoms and point it back to what happened and say, trauma. I am sick because I lived through x,y,z and IF that hadn't happened, here's the life I would be living, which is great, but hopeful of a reality that I'm not currently dealing with. I think my experiences have been different, and at times, the trauma and physical symptoms overlap ie anxiety, depression/lethargy etc. There are explanations about how one's mood can impact how one is feeling, this is all true and the point that I am actually trying to make: that the body and the brain can be connected. Dysfunction in the body can also affect how one is feeling, and impact your mood as well. So, why do we have such a hard time focusing on separating physical symptoms from trauma, and approaching them as something treatable instead of just a symptom to trauma IMO? Is it just an extension of the magical thinking we had to employ to survive as children? And maybe the reason that trauma can be so hard to move on from is because some of the underlying emotional symptoms indicative of trauma (anxiety/depression etc) aren't always a direct result of trauma, but an underlying physical condition, and that also doesn't mean that they don't co-exist with trauma.

Perhaps I'm lucky because I have a very specific time and memory of when my body "broke." I had lived my whole life with trauma, yet there was always an energy, something upbeat inside that affected my physical vitality for lack of a better phrase. It was like a desire to overcome, the energy of finding a way out. One day, or probably over a period of several weeks, I began to realize that as much as I wanted to internally, I could not summon that vitality back. It was like there was a disconnect from my mental intentions from what my body could actually do. Emotionally, it was a difficult time. I had just left a prestigious graduate program that wasn't working out how I expected. I needed to make a decision about what I was going to do with my life that included moving to a new country to start work in a competitive field where I didn't know anyone and had no professional contacts. I was starting from zero and all I had in my head was my family's voice (and my experiences of them) about what I was going to do with my life and how was I going to survive? But I made the decision to do it, and I did it.

When I moved, I noticed my physical symptoms getting worse. I had constant lethargy, I had weight gain, I had brain fog etc despite the only thing really changing was the move. I still ate the same, made sure to exercise a lot etc. I thought, maybe this is depression, this broken feeling, and tried out anti-depressants that didn't do much. So, I discontinued them. I moved a couple of times over the next couple of years, and there were some subtle shifts in both my physical and mental symptoms until I moved into an apartment with an ensuite where I became really sick. All of a sudden, I could barely read a page without falling asleep, my moods and anxiety were all over the place, the weight was going weird again and I felt tired ALL the time. This was also coupled with really bad night sweats, and I was no longer able to exercise without feeling completely exhausted and breaking down. Something that had never happened before.

I went to the doctor again because this time I could see that this wasn't depression, this was a very quick change in my physical symptoms. There was a nice doctor that listened that there must be something wrong because I was adamant about my symptoms, but there wasn't anything that they could actually test for. They had done all the tests and they all came back "normal." So, I started researching symptoms and came across thyroid disorders and Hashimotos's Thyroiditis. Ok, the symptoms lined up and I even managed to convince my (unNPD) grandmother to get tested because it sounded a lot like what was going on with her. She did get the test and it was positive. I thought ok, this is an autoimmune condition that is hereditary, so there's more of a chance that I do have it. However, and it wasn't until about three years later that I did get the full antibodies panel and the results came back negative, that I realized it wasn't the "root cause."

What did help me during this time is that I followed the gluten free protocol for Hashimoto's because I could see a marked difference in how I felt, reacted to situations etc, when I did eat it and when I didn't. It didn't make sense that I had these reactions to gluten when I didn't have Hashimoto's or celiac, and I made sure that they did the genetic testing to find out whether or not I had it. I followed a trial and error method where I could see that there was a notable difference in my mental, emotional, and physical functioning when I was "glutened" (and I became able to trace these changes back to something that I ate at the time), and when I "ate clean." So, I kept a gluten free diet, which I still follow, and I think it has been responsible for eliminating a lot of inflammation. Later on I learned that genetics play a big role in how inflammation can show up in the body. For example, if TNF-alpha and IL-6 SNPs have mutations in them, inflammation can show up in the body as depression and/or anxiety. Both of which I have as well as some markers for MCAS and celiac, but not all.

So, I continued to be gluten free and it had a big impact on how reactive, or emotional I became about situations that triggered me because yes, trauma is/was still a factor. However, I didn't have a root cause, or reason why I couldn't suddenly eat gluten and why I might be gaining weight despite my diet and exercise regime. I had been tested for diabetes/insulin resistance (all good), thyroid (anitbodies negative for Hashimoto's). I did have a saliva cortisol test which showed low DHEA, but my overall (GP) hormone panel was fine.

At the time I was talking with a collegue who had debilitating stiffness in her hands and who thought she was at the point of having to quit because she wasn't able to function. I told her about the Autoimmune Paleo Diet and trying a 30 day elimination diet to see if she found any difference once she eliminated gluten etc and surprisingly, she did. A lot of her symptoms went away, but she still had certain issues and began working with a functional medicine practitioner whom she recommended to me (it is a whole other story about finding someone I trusted to work with after what felt like being led down so many dead ends by naturopaths who seemed like they were just looking for money, and the only testing seemed very "out there" biofeedback testing, or something to that effect).

So, I began working with this woman who recommended a full thyroid panel including antibodies (negative), a hormone panel (all good), and then suggested a gut panel. I guess because of my trust issues with practitioners (well, let's say trauma and dealing with ideas around agency/power), it took me a while to follow up on the gut panel. I had also moved after our initial appointment and was following a strict diet and exercise regime where I was finally (!) able to see some results. So, I began to doubt and think, was it all in my head after all? I hadn't been tracking calories and lifting weights when I previously had weight issues, so maybe it was me? Trauma thinking! It seemed like again this woman didn't have answers, or wanted me to spend unnecessary money on these things (more FOO ideas), but then I moved and started to become sick again. Well, the only sickness I noticed was that I couldn't lose weight. Looking back, I think I was so used to overlooking a lot of the cognitive symptoms that were there (apathy, executive dysfunction) because "that's probably trauma." At this time, I was also told that these symptoms are trauma, or perhaps they're stress etc.

However, I had just done this a year and a half before! I was following the same exercise routine, I was eating the same foods and now I was gaining weight. Something wasn't right, so I went back to the FMP and she did a gut analysis (some reg flags), a SIBO test (positive, and where I did my own test for hydrogen sulfide while waiting for her results and found out how "toxic" I was, which also made some other symptoms around alcohol make sense), and suggested that my root cause could be mold/CIRS. I didn't believe her. It sounded crazy that mold could cause me to gain weight until eight months later, I went into the room that I never used (funny that as I think my body just knew) and saw the black mold had gotten worse. I didn't even remember at the time that I had already sent a text message to the landlord letting him know that there was a little bit of black mold there and that he should do something about it because it was difficult to get rid of it.

So, here I was having someone tell me a, let's say plausible (my scope for plausible is a bit wider than most I think as I had been dealing with these issues for eight years by this time), reason for why I was sick and a source for all my symptoms, and I refused to believe her for eight months. It wasn't until I had someone on a methylation forum (I was deep into methylation as a source for what was going on and it definitely plays a role in how one's body detoxes mycotoxins) say that mold was the driver behind his CFS that I stopped and finally took on board what she said. To me, that is the trauma symptom/response and I still need to unpack that one. So, I tested for mycotoxins in the body and the results came back very high. This is a condition (root cause) that leads to hormonal imbalances (ie cortisol/sleep issues), gut issues (food sensitivities ie gluten/sulphites), cognitive/neurological issues (ie lethargy/depression/executive dysfunction), immunological issues and weight gain etc etc. It is also a hereditary/genetic condition that can have more profound emotional/psychological effects. For example, I learned that suicide ideation can be a symptom, and this is not just a one-off that a couple people have had. It is a SYMPTOM present in a significant number of people. This psychological/emotional overlap is why I think it is fundamental that all symptoms are not just considered trauma.

When I was 14 my father committed suicide. At the time, it didn't make sense to me. I guess one could say that these things never do. Of course, that's one way to look at it. When I started to learn about CIRS and the symptoms of mycotoxins, I thought about when I might have been first exposed and I remembered a dry cellar in the basement that always smelled musty, and that smell is a sign that mold is present. I remembered a lot of my dad's symptoms – migraines, weight gain, OCD, rage, and of course suicide ideation. I also remembered that my father renovated our entire basement at a time when no one knew about mold, or would have taken any breathing precautions when dealing with it. My father also came from a dysfunctional family with an alcoholic mother. People could say that it was trauma. However, I don't think that's the sole reason for what happened and believe that his physical health was also a factor. If he would have cleared the mycotoxins present, or if we would have moved, would he still be alive? I don't know, but at least talking about it might help someone take notice of their environment and the symptoms that are coming up for them when they are in it.

As for me, that break down just before I moved? What I had forgotten until very recently was that I had suffered a massive spider bite on my leg around that time. Or a very large bump that resulted in bruising etc. Recluse spider bites are known to trigger CIRS reactions though recluse spiders are not native to where I was. Perhaps another spider venom can also trigger that reaction, but I need more evidence of this and am going to ask at my next FMP appointment. I also can track the years of feeling better, and then feeling worse to moving between different apartments with varying degrees of mold.

Growing up under constant stress does make one more susceptible to epigenetic changes that occur. I also had to be very sensitive to my environment as an infant because I had unsafe, or unpredictable caregivers (as did my father). Now I have a condition where I am highly sensitive to the environment around me and its toxins. I was an infant that wasn't allowed to have boundaries, and now I am highly sensitive to invasive toxins. So, in a symbolic sense, I am living out my trauma physically. However, these symptoms are also the result of very physical genetic (and/or epigenetic changes) that are preconditions.

I can help manage some symptoms by lowering my stress ie I have some CONTROL, and this I think is the issue for trauma suriviors IMO because it gives us, or me, the illusion that I am responsible for altering the bad things just like I had to believe that it was my fault for what happened to me growing up with FOO; if I would have listened to my fmp right away maybe it would've felt like I didn't have control over my environment because I didn't understand what she was saying and then I wouldn't be "safe", but it doesn't change the fact that I am susceptible to environmental toxins, or that it will ever go away. As an adult, yes I can do things to help myself get better, but I can't deny that those conditions exist, or are simply a result of trauma, or that the emotional and physical aren't connected. For me, it wasn't all in my head and only addressing the emotional side doesn't, and didn't, address the physical side because I was in therapy almost the whole time this was going on with a good therapist.

What I think makes these circumstances more complicated is that there isn't a lot of support from traditional medical communities, and/or research etc. What research there is tends to be very new and seems quite "out there." I am not suggesting to drink bleach etc, or apple cider vinegar will change your stomach pH and solve all your problems, but there can be testing that is more structured and extensive than traditional medical testing, which might be more indicative of what is going on physically, and give some answers that traditional medicine cannot. So, I'm sharing all this because it was clear to me that there was something physical going on. Even though I was told it was all in my head, there was enough evidence at the time to show that it wasn't, and that making certain changes (ie cutting out gluten) did have an emotional/physical effect. It just took me 10 years to stick to that and understand why.

Now, given everything, and this is the anecdotal part, I would say that my startle response is vastly reduced. My  anger and road rage as well, though of course, these issues still exist and some are, at their core, trauma based. I would say however, that the body intensity when I do experience them has lessened, as has my reactivity to certain things. I noticed a big cognitive shift when I moved out of the moldy flat and just wanted to start doing things again – cooking, cleaning etc. Is it "healed" no, and again, there is a trauma component to these things I think, but it's not the whole story. I also had a worsening of physical symptoms at the time of moving out and had new/old symptoms appear, so it's not always a straight line. MCAS and some of the symptoms from MCAS are another emotional/body connection, which I think can be overlooked as trauma (ie difficulty thinking clearly, memory problems, anxiety, irritability, depression, exercise intolerance). The other very tricky thing is that, for me, they're not always present, but come in flare-ups when I'm probably dealing with higher than "normal" inflammation. To me, this is a case of you're perhaps susceptible, but no "diseased" enough to be conventionally treatable, so it must be emotional, which isn't necessarily true. I think it is more about a journey and taking different things on board as you go through it because I think that's all I really can do. Unfortunately, I think it's the trauma and how I deal with it that shows whether or not I'm willing to explore that. To me, that's the trauma talking.