Messages

Welcome!!!! I hope you can find comfort and support here - I certainly have!
and your kids are already lucky to have a mother like you because you are willing to face your demons and fears and fight for yourself and for them!!!!

Kizzie - thank you for sharing that letter... I just read it and it means so so much.

Hurting mother - I too am struggling with CPTSD and motherhood. Because of my childhood, I can't and won't have biological children of my own... but I currently have two incredible foster daughters and motherhood is kicking my butt (and triggering my CPTSD in a major way). If you ever want to share war stories or commiserate or just vent a little - I'm all ears! and if you didn't get a chance - definitely read the link Kizzie included... just brought me to tears while inspiring me to keep fighting!!!

thanks!

Thanks for following up, Kizzie.

While misery may love company - certainly sorry that so many of us are dealing with this.

Though I haven't participated in the book discussion thread, I've been reading the disassociation book and I'm wondering if maybe it's one of my personality fragments that's tied upin the physical health issues and maybe I can reconnect and ultimately better understand what's going on...

we'll see...

Thanks 

That being said, you may want to get a second opinion? I do have the tender points - but I don't wake up with headaches (ever really) - they build through the day and are the worst at night. I do have nausea but I think it's connected with GERD and IBS. I don't think headaches or nausea were linked to the diagnosis. Several doctors have diagnosed me with it over the last 6 months (I kept ignoring them and getting second opinions - but have since accepted it... kind of...) - but the main criteria for them (aside from the most recent rheumatologist who did the tender point test) was migratory pain in my muscles and joints with zero other explanation and major sleep disturbance... though I'm sure they took the headaches, IBS, depression and anxiety, etc. all into account. (Though at first everyone thought it was RA or my thyroid - but according to my labs i'm the healthiest person alive (ahhh)).

What type of doctor did you see? If you're still in pain - maybe you should get a second opinion? Or has anyone ever thought it might be chronic fatigue? I've been reading up and they seem very linked... the only real difference I can tell is that with chronic fatigue the exhaustion is more upsetting than the pain but with fibro the pain trumps exhaustion - but both have both.

I really do hope you find some answers though. It's kind of like w cPTSD... having a name allows you to google things and buy books which is one of the top things on my distraction/coping skills list.

Thank you so much for your understanding.

Did they say you didn't have enough tender points or something? I've been reading a lot of books on Fibro and some of them argue that the tender point exam isn't always fair bc part of the issue is that pain is unpredictable and migrates within the body so possibly someone with it but maybe not as severe might not register enough tender points but still have it. What did they say was causing your symptoms then?

I'm glad you didn't have FM - though it must be equally frustrating to have so many of its symptoms but once again end up with no answers. When I did get the diagnosis, part of me felt relieved that my pain was being validated with a name...

That being said, the name seems to be a blessing and a curse bc now the name seems to be a catch all to dismiss providing help. It's deemed as incurable and so.. yup.. you have FM... so you'll just have to make life adjustments to manage the pain as best you can and here are some meds but they don't actually help...

my neurologist has been trying to help me with the migraines and FM but now even she is saying maybe it's just stress... (which I'm not denying - I get that my psychology wreaks havoc on my body... but please still help me! I see a psychiatrist, I go to counseling, I take psych meds, I've essentially stopped working... I'm doing everything I know how to do to manage my stress... so telling me it's stress doesn't tell me what to do about that  )

Oh well, I'm seeing my rheumatologist on Tuesday and hopefully she'll be able to offer something more? If not I just don't even know... I'm in so much constant pain and so fatigued... how can this be the rest of my life? 

Anyway - I'll take your advice and try and revive the thread every once and awhile to see if anyone new joins that might have this... or possibly has it undiagnosed?

Thanks again!

Wow... this concept of the "Trophy Child" and your story, Vanilla, resonate so much with me... truly.

My father died over Christmas and the drama around the situation brought my younger sister and I much closer in having to deal with it... it also forced us to have to interact with our NMother (we were all in the hospital together for a week until he died). I'll tell the story of that week at another time bc I'm still traumatized from it... but... there was a strange recreation of our childhood roles and dynamics between the three of us mother and two daughters and it was eye-opening to see as an adult... also so helpful bc my husband was present for almost all of it and so for the first time we had a validating witness...

Anyway the horrible situation exposed to me just how much my sister had suffered and also made me confront the fact that I had been the Golden Child... growing up - my mother only cared about me (to the point of terrifying and abusive and incestious obsession) but she couldn't stand my younger sister. She said she had had a second child in case I died - so she would still have one - but she was never interested in her. It also didn't help that I am most likely the product of an affair and am very fair in coloring vs my sister and my dad's other kids who are all very dark and look just like him. I was literally my mother's golden child...

But it wasn't that I could do no wrong... good God could I do wrong... and the wrath was terrifying... but the wrong was to ever have a thought or feeling or accomplishment separate from what she wanted. I was literally my mother's puppet in all things. I had to be the absolute best at everything... but I also had to think like her anticipate her feelings and needs - I had to pretend to be her - but one step ahead. She literally trained me to meet her every need in every way. Through this "attention" - I ultimately experienced more technical abuse than my neglected younger sister because as I got older, my mother viewed me as an extension of herself in her relationships as well and fed me to the men in her life like an appetizer... so I grew up resentful of my younger sister who seemed to avoid the pain and suffering that came with being my mother's "soulmate".

Meanwhile, I didn't realize how my thoughts were being manipulated about her. To this day, in the back of my mind, there is this voice that tells me my sister as the less intelligent, less creative, less attractive... but now - as an adult - since I've been confronted with this... I'm suddenly like, wait... what??? My sister is literally getting her PhD and she is objectively definitely more attractive then i am... does she come across as a creative type? no... but she was also told from birth that she wasn't. She was always made to live in my shadow and it has clearly shaped the way she sees herself and how I see her...

All this rambling though to say... only in the aftermath of my dad's death - when we were trying to determine how to handle our relationship with our mother - did it come to light that my sister was so deeply suffering and I truly had never validated that fact. In my mind, she was the lucky one. She escaped my mother's terror... but in her mind - her own mother couldn't even be bothered to love her... how can she ever feel that she has worth?

So my question is... Vanilla - or anyone else out there... how do you handle sibling interactions? I'm trying to be much, much closer to my sister and make up for all the hurt the best I can. I'm older and while I thought I was often protecting her while we grew up - I now realize that the physical hurts were not what she needed protection from
She's getting married and hasn't told my mother (I have returned to no contact since dad's death - but this is the first time my sister has done no contact because she was still financially dependent on my parents) - my husband and I are trying to take the place of parents (which can't truly happen) but we are trying to financially support her and play the role of parents for the wedding...
I have apologized to my sister and owned my misunderstandings about our childhood - she has done the same...
but at the same time... there's that selfish part inside of me that still views it as some kind of competition and feels bitter... as in - how can what she feels ever compare to my suffering?

I don't want to feel that bitterness deep down... she's my only real family - I want to be as close to her as possible... we are the only two people that will ever understand what we went through as children... but our versions are so different... how can we truly come to terms with it and understand each other? Our issues are literally polar opposite coming out of this.

Sorry for jumping on the thread and adding my own issues and needs for support! But thank you for starting it!!! So glad I came back to this site today!!!!

Has anyone else been diagnosed with this?

I joined an online support group for it... but feel like the connection with psych issues and CPTSD is so strong that I still feel alone on the site. I feel like a lot of support the other fibro people offer totally make sense but I don't know how to do them because I have such a disconnect with my body and such a hard time taking care of myself.

Just wondering if anyone else had both issues... would love to talk.

Thanks.

omg - this is such a major issue for me - thank you for starting this topic!!

I experience the EXACT same issue - when I'm at work (and in a crisis) - I feel no pain, no fear, no anxiety... so much so that in reflecting, I was and am clearly addicted to work... literally addicted - it's my drug of choice. Work distracted me so much that I would go to doctors or urgent care over holidays and it would turn out horrible things were wrong that I hadn't realized. Over Christmas one time it turned out my rib was broken and I hadn't realized it until the evening after the last day of work. Another time over the weekend my eardrum burst because I had realized how bad an infection I had was...

Meanwhile, my health (I'm sure thanks to this) has taken an insane turn for the worse and in October I was diagnosed with Fibromyalgia and my world ground to a halt. I took a couple of months off of work (because my boss thought if I just slowed down to relax I would feel better) but instead I felt worse because I was just trapped at home with my pain. I had to step down from my position because my illness has incapacitated me and I was responsible for too much - so now I'm essentially just consulting and I'm miserable. I miss work and I miss being able to escape from my pain.

Here's my dilemma though... so even when I'm not distracted - I've done this for so long that I don't understand what is wrong with my body. Sometimes I go to the doctor and I don't know what to even say? I don't know what's hurting me... and frequently they'll say - but this is wrong? how has this not been bothering you? and then suddenly it does start bothering me - like I had to be told about it to realize I was in pain. Sometimes they will press something and ask if it hurts and I will say - "no - but please stop doing it, I don't like how it feels - stop" and they blink at me like... so is it pain? And I don't know - I hate the sensation but I feel like I've felt other things that are more painful that were different...

With the Fibromyalgia... to try and learn to manage it, I'm supposed to "listen to" my body and understand what it's telling me. I literally have no idea. Every day my pain seems worse but different and I can't keep track... I'm so overwhelmed. Sometimes we end up in the ER and my husband always says "why did you wait so long - why did you wait until things were this bad to say something?" and I'm just like... I didn't realize they were this bad but then suddenly I did? I don't know...

I've started trying to do yoga - and in addition to the magic of Lexapro (which I just started a couple of months ago) - I've stopped hating my body to the degree I used to (where part of the problem was that I was happy when I hurt because I hated it so much)...
now I am trying to be more caring towards it - but I don't know what it's trying to tell me or how to help and I feel so upset.

I've been diagnosed with Disassociative Disorder as well as cPTSD and so I think I also tend to disassociate so much from it that I'm confused by it.

Any help desperately appreciated - sorry to add my problems to this instead of offering support or solutions!

Vanilla - I am so glad you now know of this! I'm sure you've seen since googling it that it's actually become a pretty chic topic (which actually annoys me because now everyone claims to have it and I'm like NO - THIS IS MUCH MORE THAN JUST "NOT LIKING" CHEWING NOISES!!!!!! lol - I can 100% relate to you though with going crazy at work. I actually always travel with earplugs - no matter where I am. When I'm in meetings - I have two different types - good ones that block out all sound and then cheapo ones that just muffle it. I'll put a good one in one ear and keep the muffle one in the other so that I can hear what's being said (barely) but my body cannot rip itself apart from the inside... because why on earth do you need to eat carrots during this meeting??

mcq - interesting... I haven't really discussed this in therapy (mentioned it - but in passing)... I've often tried to figure out if there was a connection but I haven't found it yet... but hypersensitivty seems to be my schtick... as well as cross wiring because I also have mild synesthesia (which is when words/letters/numbers are automatically associated with colors and feelings in your mind) - like the word Wednesday appears in green to me, etc.

Thank you everyone for your support. And, Kizzie - thank you so much for following - that is so thoughtful of you.
I will reply with a longer response because much has happened... but I am going to post a general update first because a lot has also happened to me - so I'm going to post it in a new thread. Thank you again - so much.

with Fibro can you ever be pain free again?
I've been out of work and bouncing from doctor to doctor to try and figure out where all my symptoms are coming from... I'm going for a neck/spine MRI this week - but the last four doctors have said Fibromyalgia - only my physical therapist disagrees with that.
but... what then? I'm already on antidepressants, neuropathic pain meds, go to therapy, do yoga, go to physical therapy, do aqua aerobics, watch what I eat, haven't been to work in ages, go to five million doctors... but each day the pain is worse... I'm only 33. How can this be it? that's just it? fibromyalgia and good luck?

I loved that book!!! And I would be seriously interested in this too. Please share how it goes. How did you even go about booking something like this?

Thanks so much for your responses.

Quick Update - after a bit of a struggle - she came to two intake appointments (one with me in the room and one with just her) which was a huge step for her (especially because the intake person was a man - credit to him for being able to so quickly create a safe space for her). Unfortunately, because of her insurance situation we have to go to a clinic and the wait for everything is just so, so long. The intake person said she's ranked highest priority because of the symptoms she's presenting and they gave us a psychiatric appointment but it's not for another month. They're starting her with therapy asap (thank goodness) but now she's refusing to go again - and I'm worried because the therapy will be with a new person who sounded about 14 on the voicemail she left me. sigh...

It's just hard because her behavior triggers me and then my husband doesn't know how to respond to either of us.
I think some of her acting out is trust/love testing... seeing how far she can push me and if I'll still love her/be there for her/etc. (though my husband is the enabler - not me - I'm always the bad cop)... but I think sometimes something triggers her and she swings to a place where she's definitely not in control so not being manipulative... she's coming closer and closer to getting physically violent with me and I have to be SO CAREFUL when she's a hair from snapping and having to be that careful not to cause her to snap is the most triggering thing to me which it then makes it even harder to be therapeutic and clear headed with it... but at those moments my husband struggles to know how to intervene because my daughter is SO focused on me in those moments because of all the rage she has towards her bio mother I think...

Anyway - appreciate the support. I love both of them so much but am just struggling so, so much with my own issues that I don't know how to be everything to everyone. I know to take small steps and do my best, etc. but I spend so much of the time just wishing I lived in a house in the middle of nowhere all alone...

Anyone seen Frozen? I literally think I'm Elsa (before she got better lol).

my dad has started hospice and his end is nearing and I just feel so confused by it all...
I don't know how I feel... how I feel about him... how I feel about him dying...
He is still with my mother and so having to interact with her is wreaking havoc on and in me...
but after all these years I'm do disconnected from my feelings and my body that I know something is wrong and that I'm upset but I don't even know why and so can't figure out what to do next...

my dad was never around when I was growing up in the US (his job was based in Switzerland and he traveled all over the world for it.. he also had other kids in England). my mother was a truly terrifying monster but was brilliant and managed to manipulate us all. my younger sister, husband and i actually think she might be slowly killing my dad by withholding medication/medical care which is why I have had to stop the NC for now.

my younger sister and I had a long conversation last week trying to figure out how we felt about my dad - whether we held him responsible for seemingly looking the other way while we were growing up and just trying to stay away as much as possible. He's had such a hard life himself - holocaust refugee - spent his teenage years in an orphanage in a country where he didn't know the language... his first wife ran off with another man, his second wife committed suicide while their children were teenagers and then he married my mother who is a narcissistic BPD (in fairness - she also experienced extreme trauma as a child at the hands of her parents and it ended up destroying any shred of humanity in her). My father was wealthy and 30 years older than her - so I think she just wanted to pretend he could be HER father. Joke was on her because he lost his money shortly after they married... but by then she was living in a new country with a new baby (me) with no friends and no job prospects since she was a drop out.

anyway... where are these ramblings taking me? i thought i had decided to be at peace with his impending death and that - shrug - it didn't matter because I don't get attached to people anyway, right? but then it seemed i was repressing good memories with him as well as the bad... my sister started pointing out how similar him and i were in many ways with our avoidance and our (at times unhealthy) devotion to work. then, this week, my older sisters flew here from england to see him and my oldest sister continued that thread... making excuses for him and trying to show me who he really was - or had been - before my mother's influences...

now I don't know... is this all building up to realizing I do care about him, only to be devastated by the loss of him after so many years of NC? I guess.. better to realize it with a short time remaining than no time? (though he's not quite all there anymore so it won't matter to him)... or maybe this can just be a way of growing closer with my sisters (who I have always been distant from because my damage plays out in avoidance of connections/relationships)...?

my sisters have said that they will not return for the funeral because of my mother and so we are discussing celebrating his life in his old haunts in europe... but is it strange that I am looking forward to celebrating him more than being with him over the next couple of weeks? I want to rewrite him in my mind to be the fantasy father - and I can't do that while reality still confronts me... I don't know... it's all so painful... two days ago I went to their house and when I said goodbye to him he touched my arm briefly... but it seemed like it was a loving gesture and I ached and then cried the whole car ride home imagining what life would have been like if he had been a real father (like I see my husband being to our girls).

ok... ramblings over... just don't know what to do with myself since I can't seem to express this to anyone in my real life

Just curious if anyone else has this?