Physical illness vs cptsd

[Sparkle2709]

Ok I came to the realisation that I had cptsd via my physical illnesses. I have pots, dysautonomia, eds type3.
My pots results from adrenaline surges and an inability for my central nervous system to function correctly. Finally I realised it made sense that as I had been in highly stressful situations for basically my whole life it followed that my system had got completely confused and messed up and no longer functioned properly.
This was exacerbated by the eds as an underlying genetic disorder (both my daughter's also have eds symptoms and have never suffered trauma). Pots and dysautonomia are common co morbidities of eds. So I might have developed them anyways.
I wondered if anyone on here has any experience of these...honestly if the answer is no then I think some folks might be putting physical disorders down to just trauma effects as pots and eds 3 are not as rare as all that (though getting a diagnosis is very difficult) and we are a sizeable group.
I'm gonna list some of my symptoms and see if it rings any bells.
Fainting/pre syncope/lightheadedness
Migraines
Adrenaline surges that are purely physical, no emotion attached
Sweats/shivers
Nausea
Joint pain
Fatigue
Sleep disorders
IBS due to gut motility problems, food does not pass through the gut properly leads to nausea and acid reflux
There are others....specific to eds 3 these include occasional joint dislocation/subluxation  (a subluxation is when a joint comes partially out but goes back, many people would not realise this is what happened and just experience pain in the joint) and soft velvety skin or hyperextensible skin.

Sounds an awful lot like a list of symptoms related to cptsd doesn't It! So my problem is sorting out which symptoms are related to trauma and which to an underlying physical disorder. Also I am too afraid to report any trauma symptoms to my gp as I know everything will then be labelled as "she's crazy" ignore her. Gp's tend to gaslight these physical disorders at the best of times and even without any diagnosable pyschological issues (which in itself really doesn't help in dealing with trauma issues).

Anyone any experience in negotiating this minefield?

[Three Roses]

 

I have no input but wanted to make sure you got a response. I'm sorry, that really sounds confusing to try to figure out. Hopefully someone here will have better input than this!

[Dee]

All I can tell you about is myself.

I have IBS, yes that is related to trauma.  I also have sleep disturbances and nausea, also related to trauma.

When my IBS flares up I tell my T and we discuss what stress is going on in my life to cause the symptoms.

I am honest with my GP about my history to an extent (she doesn't need as much information as my therapist does).  It helps her understand what is going on with routine medical issues.  I need an exam and she has walked through with it promising I will be in total control.  Now....I just need to schedule it.

[Kat]

Hey there, Sparkle2709!  I wouldn't be surprised at all if all of what you're describing is CPTSD caused/related.  I just recently started Somatic Experiencing therapy with a healer who does hands-on bodywork.  I'm learning so much about how CPTSD affects the nervous system, and it all makes absolute sense.  It's something you would think a GP would easily understand--if your body is in the middle of a flight/fight response, of course your digestion is going to stop since the body shuts down all but the most necessary systems for survival.  If your body has been accustomed to constantly being on high alert and in survival mode, it's going to affect how different systems work.  There's nothing "crazy" about it.  I believe there's a downloadable sheet on this website designed to be taken in and given to GPs to make them more aware of CPTSD.  I don't have time to search for it just now and give you the link, but it might be something you'd like to consider giving your doctor.

I've had an amazing experience with SE so far.  It might be something to look into if you haven't already.  Best of luck.

[sanmagic7]

i have some of your same symptoms, but i believe they are c-ptsd related:  ibs, sleep problems, fatigue, flu-like symptoms related to stress.  my system is also very sensitive to medications, does not tolerate them well.

it sure can be difficult to separate them out - what is physical compared to what is trauma-based.   i do hope you can get some genuine help from your gp.  i've just gone thru a series of tests to determine if there is a physical basis for my problems, and basically i'm physically healthy.

that leaves the age-old adage of 'it's all in your head'.   when i looked at that more closely, did more research, i've found that most of it is trauma-based in ways i hadn't realized in the past.   i'm ok now with knowing it is mostly all in my head because that's where traumatic responses begin.

best to you with this.  it can be difficult and time-consuming to figure out which belongs where.  sending a warm hug your way, full of enlightenment to help you understand exactly what you're dealing with.

[Sparkle2709]

Thanks folks...its a maze and sometimes it's hard not to get lost in what is physical and what is a physical symptom caused by psycholgical stress. I definitely think I need to look at everything in the whole. I have noticed (As I am also on several health forums) that there are some people with pots/dysautonomia in particular who briefly mention PTSD but focus exclusively on their physical symptoms of illness. I guess it's safer but I think for the best hope of progressing in all areas I need to stay open to both.
It really started to make sense that as dysautonomia  (which pots is a form of) is a failure of the nervous system caused by problems in the sympathetic/parasympathetic nervous response years spent constantly stuck in fight/flight would take it's toll.

[Kat]

I hope you're getting help for all that ails you.  You said, "...it's hard not to get lost in what is physical and what is a physical symptom caused by psychological stress."  I soo get that and at the same time find it absolutely ludicrous.  This issue drives me nuts. 

Somewhere on this forum I posted about a severe headache I was having.  I asked when it was time to see a doctor.  Basically, I wondered how to tell the difference between a "real" headache, a "dangerous one" and one "only" caused by stress.  The reality is they're both * headaches.  They hurt the same.  The same physical mechanisms of pain are at work--the headache doesn't care about the cause: It's just a freaking headache.  And that's what is so frustrating about CPTSD.  The pain is the same, but the source can be hard to see.  And if it CAN'T be seen...well, then, it doesn't really exist, now does it?

When they say, "It's all in your head," they're right.  That's where the pain is coming from, so let's address it from that perspective. Saying "It's all in your head" does not equate to "The pain is not real," or "You're pretending to be in pain."  It means that something * hurts and you'll simply have to dig deeper.  I think that people (doctors are people) are afraid to dig deeper.

[ah]

Hi Sparkle2709, I have eds3 too with every possible complication for good measure.

I have IBS-ish symptoms too, I was told by an eds3 specialist that they're due to hypermobility of the intestines and possible chronic inflammation. But maybe they're also IBS.

I have a lot of what you mentioned too, some of the symptoms of trauma and eds3 overlap. For example fatigue, sleep disorders, migraines. Plus it's all happening in the same body. For me I guess the line is whether I'm in emotional misery, beating myself down viciously, whether I feel the physical signs of stress and panic and I feel the self hatred and catch myself caught up in flashbacks. Those are maybe the main things that eds3 on its own probably wouldn't do. Physical aches and pains for example probably are a result of both.

In my case what happened was I had eds3 genes, probably; then abuse in childhood, plus continued abuse in adulthood "kicked in" the genetic disposition so my eds3 became active and deteriorated quickly. I got early onset arthritis and low bone density and low vitamin D and Calcium, chronic pain, most of the known complications decided to take residence in my body. So it seems trauma jump started the genetic potential for illness.

I'm with you on worrying people might be misdiagnosed. It happened to me for years. I was told "it's all in your head" and "you're spoiled" for decades till I got an eds3 diagnosis. This is why I don't trust doctors so much. I tend not to mention trauma symptoms to doctors, I'd talk about them to a therapist. I always try to bring information about eds3, maybe if your gp is open minded you could bring some info about trauma as well?

Hope this helps and doesn't complicates things even further.