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PTSD caused by Lyme **might trigger**

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Posted 7/29/2015 7:07 PM (GMT 0)
I have PTSD symptoms and I am convinced it's from a long battle with being sick; treatment; hospitals; tests; fearing I would be disabled forever (in my early 20s); bipolar manias (now I know it was from Lyme);doctors;waiting rooms; SEVERE insomnia; 3 picc line failures;chest port; horrendous depression and PMS; severe "interstitial cystitis" etc, etc....

I find that I very often don't talk about the illness because sometimes I cry uncontrollably afterward and have a sort of panic attack. Either that or I feel completely numb. It's a gamble and I would rather avoid talking about it at all and tend to avoid reading about it. I can only spend 10 minutes or so on the forum.

How common do you think this PTSD is? Anyone else have it?
Posted 7/29/2015 7:10 PM (GMT 0)
I have mentioned it a few times - vocally in my personal life...and also on the forum...but I think people think I'm joking...but i'm not.

Prior to diagnosis...I was really scared....with the sudden onset of symptoms...that kept piling on...


If I talk about those early days...i instantly tear up....
Posted 7/29/2015 7:22 PM (GMT 0)
Well, I deal with it - although as time goes on, it's not quite as bad as what you explained any more. I'm okay as long as I don't think directly about how it felt- but if I mess up and do that - it all comes rushing back - all the heaviness, fear, panic, depression - I swear, all of it. Which is why I rarely go into the depths of what I went through. It's still too painful - and scary - to think about. I have to stay impersonal.

My hope is that one day I will be able to get to the point where it never feels like that again, but until that point in time arrives, I find it best to stick to the medical side of things instead of bringing up how it all felt. Semi-avoidance has helped me deal with it.
Posted 7/29/2015 8:06 PM (GMT 0)
I understand Kayaklove

I have PTSD because of cancer, it developped at the end of treatment and after I was cured.
I'm scared it'll happen again with Lyme Disease and everything that goes with it. Actually, these last weeks, I've been feeling pretty awful, wanting to quit the Belgian Lyme groups, stepping out of them and not going back there.

It got pretty bad with the cancer. It has been 20 yrs this year, and it seems that I'm starting to be able to talk about it more and more. I could give cold, clinical advice to someone who was really in need, but I couldn't use the word itself, cancer. I would say 'it', or 'that disease', or 'back THEN'. I would get short of breath in hospitals, especially the one I was treated at. I went through some serious periods of depression, periods that lasted several years each, but no one knew, because I couldn't talk about it. Smells I know from back then, like perfumes and cleaning products, the smell of bandaids, adhesives, it all makes me so nauseous, and instantly throws me back to that time. And with Lyme, you encounter all of that...
Some things have gotten better with time, I can talk easier about it. But the smells, those feelings connected to my senses are still upsetting me very much.

With the Lyme, it's starting to show too...
I'm starting to show 'avoidance'... This forum, for some strange reason, is the only exception, I don't know why. It doesn't make me feel bad.
I've been wanting to unfriend Lyme acquaintances (not the people I got friends with), wanting to step out of groups, and other forums. I get angry, or feel bad. I was getting nauseous stepping into my llmd's waiting room. I'm starting to show signs of depression too. Not the short, herx induced bouts of depression, but the longer lasting periods.
Feeling numb about it is, for me, the worst. I prefer crying... at least it doesn't bottle up when I'm crying (like now...)
Posted 7/29/2015 8:23 PM (GMT 0)
Aww...Marie - so sorry - you've been through so much - more than anyone should have to go through!

I still cry often - not daily like I used to...but often enough that it shows me that I'm still 'raw' about it all.

Our 20 year old son (only child) moved out two months after the start of my symptoms...so that just made it worse. I was laying on the couch - with severe radiculopathy and cried when he told me. I should have been expecting it...the signs were all there.
Instead of being excited (yes, and a little bit sad) for him to be starting his life on his own...i was very emotional...to the point of upsetting our son.

That whole time frame - thinking about it - still makes me sick to my stomach sometimes...the emotions...the feelings of 'losing my mind'....blech!
Posted 7/30/2015 1:37 AM (GMT 0)
Journaling could be really helpful, as well as meditation. I really like Morning Pages:

http://juliacameronlive.com/basic-tools/morning-pages/

It's surprising how much we hold inside.
Posted 7/30/2015 5:35 AM (GMT 0)
Kayak... Yes to PTSD... In my case it's from childhood trauma, but lyme has either given me a sort of access to it, or another layer to it... In any case, my babesia herxes in particular without fail come with panic attacks re: past trauma. I try to roll with it, meet what comes up with the idea that I'm finally feeling emotions and letting them go. But honestly I'm not sure if this is really the case, or if I'm caught in a kind of trauma loop. Maybe let's keep in touch about this.

Bluebyyou I am so deeply into Julia Cameron! I use her books in my teaching all the time, and in my own creative practice :)
Posted 7/30/2015 6:03 AM (GMT 0)

kayaklove said...
I have PTSD symptoms and I am convinced it's from a long battle with being sick; treatment; hospitals; tests; fearing I would be disabled forever (in my early 20s); bipolar manias (now I know it was from Lyme);doctors;waiting rooms; SEVERE insomnia; 3 picc line failures;chest port; horrendous depression and PMS; severe "interstitial cystitis" etc, etc....

I find that I very often don't talk about the illness because sometimes I cry uncontrollably afterward and have a sort of panic attack. Either that or I feel completely numb. It's a gamble and I would rather avoid talking about it at all and tend to avoid reading about it. I can only spend 10 minutes or so on the forum.

How common do you think this PTSD is? Anyone else have it?

I know the feeling, although it is far less severe when I am having a good day .... Hopefully, when I feel consistently physically well, the experiences will have strengthened me to the point where nothing phases me ......

But just the thought of driving in the car on some miserable gloomy January day to a sterile doctor's office makes me want to throw this laptop across the room

I want to laugh at that - really - but it is true

I think keeping a sense of humor is a MUST - an absolute must

What also keeps me sane is the notion of all the fun I will have when I am fully healed, and driving my Land Cruiser across all the doctor's lawns who didn't want to stick their neck out and help me

LOL

Seriously, it can be bad sometimes ... I am constantly painting hallways and rooms in my house to change the reminders ......

I will buy a new CD ( .. yes, I still buy them ) and not listen to it because I don't want it to remind me of feeling this way - I will listen and enjoy it when I feel well .... those types of things are hard
Posted 7/30/2015 6:09 AM (GMT 0)
haha Tano - Will you be doing donuts in their front yards?

oh yes, music....I am very sensitive to music I was listening to during my darkest days....

Seasons changing really bother me, too. It's like - wow, another season gone and I'm still stuck in this life?
Posted 7/30/2015 9:16 AM (GMT 0)
When I got Lymes 5 years ago; going undiagnosed for 5 years; I was diagnosed with PTSD. I went to many different doctors, specialists, etc. Now I am sick and just got bit to pieces again with the bull's eye rash. Yes, PTSD, really: I cannot believe that psychiatrist and doctors don't test for the neurological aspects of this chronic illness. After being a Realtor for 30 years, I woke up one morning and couldn't think, remember what listings I had. Lymes come with brain fog--a very frightening thing for anyone. My mind was so sharp, then this fog. God bless.
Posted 7/30/2015 1:45 PM (GMT 0)
Tano,

Can I borrow your Land Cruiser? I have at least three doctors from Duke University that need some landscaping. LOL

Kim
Posted 7/30/2015 4:04 PM (GMT 0)
Whenever I would talk about Lyme disease in the first few years after becoming sick - my throat would tighten, heart would race, stomach tighten. It was a very physical response to just talking about it. There were areas of trauma that I had because of the disease - and just thinking about those memories (nightmares, anxiety, paranoia, absolute fear) of when the disease hit me caused this response.

I did emdr on myself through the simple online videos and all this type of panic went away. Look up EMDR for PTSD. It is very effective (the most effective therapy for vets) and it is not weird or spiritual or anything. It is basically thinking about the memory while moving eyes back and forth. The movement of the eyes back and forth simulates the brain waves that make us feel calm. So it is retracing those thoughts with peaceful brain waves and it really does work. Next time the PTSD thoughts come up - there is a calmness and peace that wasn't there before.

PTSD can be an engrained pattern in the brain of highly sensitive brain waves that are triggered by memories and thoughts and retracing the waves can alleviate MUCH suffering. I no longer go into a panic when I think about those memories and I can talk about them without my throat tightening and stomach turning in knots.
I wrote this on my iPhone so please forgive any grammar/spelling errors!

I recommend wherever there is trauma/deep stress reactions to feel those things and then look at this video (it is just black dots on the screen that go back and forth).

https://m.youtube.com/watch?v=OlfQIRJEsYk

Best!

Post Edited (SLML) : 7/30/2015 10:09:48 AM (GMT-6)

Posted 7/30/2015 4:47 PM (GMT 0)
I've never been diagnosed, but I studied/worked in the field of psychology and I'm pretty confident I'd be diagnosed with PTSD (if I wasn't too traumatized to walk through a doctor's office and talk about it, that is!)

Somehow the trauma didn't seem to take over my life until the last 3 years - after I relapsed. Something about the total shock of having recovered after a decade of illness just to lose it all in 3 short months - plus I had A LOT of bad stuff happen all at that same time, a lot of shock, trauma and loss. Guess it got to be too too much and took over my whole identity and my whole world.

I can't even say "chronic lyme disease" - when I do manage to say "lyme disease" I cringe. It's so terrible the way this world has essentially conditioned us to feel. Every time I go to a doctor for some common thing I feel weeks of stress and fear and worst of all those fears are confirmed when I talk myself into giving someone the benefit of the doubt and they still judge and mock me. Two doctors I've never even met (my nephew's pediatricians) have MADE FUN OF ME this month for being STUPID and believing in chronic lyme!

I cry almost every day - and crying never seems to lessen the load like it used to.
Sometimes I wish I could just wake up out of this nightmare and accept what's happened and what's happening and find peace despite how difficult all of this is.

I find myself 3 steps ahead of every conversation, knowing that "what do you do?" is coming so I can find an excuse to leave the conversation so I don't have to admit I'm on disability for lyme disease. When people ask me what my symptoms are I PANIC because it's so complex that any sort of description makes it seem trivial "pain, fatigue, brain fog, insomnia, anxiety..." ...doesn't quite capture the misery of lyme disease.

Even when well meaning people are curious...I draw blanks and panic.
My heart goes out to every single one of you going through this same thing. Hopefully we can find peace.
Posted 7/30/2015 5:21 PM (GMT 0)
Having Lyme is being stuck in a constant cycle of grief. Constant mourning. The only constant is change. I hold onto that thought and live vicariously through lucid memories of what health feels like. I force the belief down my own throat that things will change, all of us will be healthy again. It's exhausting.

If I let myself drown in what has been taken from me I'd be even more miserable. It's a hard, tooth and nail type of fight everyday not to hold onto disappointment. Looking on the bright side can be so bleak. The truth is too brutal to face every moment.

I have severe PTSD after this. On the real, walking into doctors offices and hospitals where I know no one understands my disease is horrifying. Knowing that if I really needed help in an emergency and had to call an ambulance or something they would have no clue how to help.... terrifying.
Posted 7/30/2015 7:52 PM (GMT 0)
I was scared when my daughter had an emergency appendectomy before we knew she had Lyme. I was afraid she'd have a bad reaction to the anesthetic. I've thought we should wear a medical bracelet so an emergency doctor would know we had it. Not a lot of help in this part of the country where it isn't commonly known, but better to have the name than nothing at all to explain whatever might happen in an emergency room.
Posted 7/30/2015 9:58 PM (GMT 0)

Meishie said...
When I got Lymes 5 years ago; going undiagnosed for 5 years; I was diagnosed with PTSD. I went to many different doctors, specialists, etc. Now I am sick and just got bit to pieces again with the bull's eye rash. Yes, PTSD, really: I cannot believe that psychiatrist and doctors don't test for the neurological aspects of this chronic illness. After being a Realtor for 30 years, I woke up one morning and couldn't think, remember what listings I had. Lymes come with brain fog--a very frightening thing for anyone. My mind was so sharp, then this fog. God bless.

Meishie - you need to consider taking a preventative. I too got reinfected (what a horror that was to realize!!) last year, and as soon as I was healed, I started using a preventative. I can't keep going through this over and over again. I just can't.
Posted 7/30/2015 10:08 PM (GMT 0)
I have found myself re-experiencing PTSD with the very physical reactions when dealing with my FIL when he lived with us during his last months (it allowed me to see that I had severe dementia while I was at my most ill point too), and any time I help those that are super ill too - like IHL. I have to admit that there have been a few times that I have read things and it sends me into this downward spiral of fear, on the verge of a panic attack, and not being able to sit still. I call it the heebee jeebees, as no one around me would understand even if I did explain it.

I'm like BorderLyme - I don't think I could walk into a head doc's place knowing that I would need to talk about it. It's really too much to talk about in detail - besides, it's not like I'd be believed - not here in Arkansas. We don't even have a LLMD in our state! There's no way any head doc would ever admit that what I experienced is real, and that would land me in jail - because I know that I would not respond kindly to someone that I had just opened up to with those things and they even hinted at not believing it.

It's easier to just make some jokes about it, and insist that improving the lives of those infected with these diseases has become my life's passion - because it has. No one deserves this. We are NOT soldiers in battle, yet we have PTSD from our experiences. It just makes me very, very angry that we aren't believed.
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