Ptsd And Chronic Illness... How To Cope?

[Kita5789]

Hello all,
I hope I'm posting in the right place. I am a supporter, but my partner suffers from PTSD diagnosed a long time ago, from childhood trauma and combat. About six Months ago, shortly after our relationship started she was diagnosed with a chronic illness, specifically endometriosis among a few other things. It has been a tremendous struggle that's only getting worse, as currently they can't find anything to manage the symptoms. She is in severe pain everyday and completely exhausted and fatigued. Recently, I think it is definitely affecting her mental health as well and she has been complaining of PTSD symptoms coming back that she thought were past her. In her particularly low moments, she tells me I don't deserve to go through this with her, because she just isn't capable of giving me some things that I need. She's hitting that isolating phase, from everyone. I know that stresses her out too because she sees she's hurting her family and me, but says she isn't choosing to. It's hard for me, but I care very much and I know this is not her fault. I'm wondering if anyone else has similar issues and can offer advice for me on dealing, or advice I can pass along I suppose. It's hard to watch her feel hopeless. I've kept mentioning getting into therapy again but her latest response is that talking won't help and she won't feel better unless she physically feels better.

 

[Friday]

I hope someone else has a different answer for you... Because I'm with your partner on this one: increased stress = increased symptoms. Especially pain. Not only is pain stress in and of itself, but it also precludes my best methods of managing my stress.

...one thing to know about trauma therapy? It's not like regular therapy. With PTSD, symptoms usually get worse in the beginning of therapy, and most trauma therapists won't touch you until you're stable... Which would mean managing her pain & endometriosis symptoms first. This is sort of backwards compared to most kinds of therapy, and is a huge stumbling block for a lot of people; their partner wants them in therapy because they're getting worse, they know if they do get into therapy it's going to get even worse, = land of 10,000 fights = even more stress. Is there middle ground? Yes. Working with a trauma therapist who therefore understands your PTSD, but doing stabilization work, not trauma work... But it's still a huge undertaking just to find someone, which still means a lot of stress. Worth it? Depends on a lot of factors. Probably yes... But... Not always. Not by a long shot. It's a risk. Getting back into therapy can be life alteringly good, or it can just be one more stress piled on, or it can be really, really, really bad (like if the person try's to take them into trauma land). So the whole "No therapy. Not right now." Thing that crops up with a lot of sufferers? Isn't pigheadedness. It's past experience.

 

[ShodokanJenn]

I have stage 4 endometriosis. It was diagnosed eight years ago. I've had surgery for it six times. Surgery helps, but only for a year or so. Then it regrows and the symptoms come back. I have pain, fatigue, gastrointestinal issues, bleeding into my kidney, liver, and lungs (I have it growing in all three places), chronic anemia caused by the bleeding. To be very honest, it is exhausting. I always feel guilty on the days when I just can't function. I LOOK fine, so I feel like people will think I'm faking it. My husband is incredibly validating though. He believes me when I say I am hurting or not feeling well. He takes care of me to the best of his ability. It definitely impacts my mental well being. And my mental well being impacts my physical symptoms. It can be a vicious cycle. I wouldn't be able to cope without therapy and narcotics. I take letrazole (Femara) every day to suppress estrogen production and shut down my reproductive system. We tried fertility treatments for six years. When I miscarried the twins I conceived with our last IVF cycle, we decided we were done and I started the suppression therapy. It helps considerably. Endometriosis needs estrogen to grow, so blocking the body from producing it results in slower or eliminated growth, and can even shrink the growths that are already present.

I'm sorry she has to deal with this. I wouldn't wish it on anyone.

 

[Kita5789]

@FridayJones thank you for all of that information! I, sadly, hadn't thought about it that way. She definitely has a lot of stress right now, and has made comments about wanting to go back to therapy but doesn't know if she'd be able to even make it there due to stress, exhaustion, schedule, etc. your comment is much appreciated and opened my eyes to other possibilities and curtailed my slight bit of irritated-ness about the subject.
@ShodokanJenn thank you SO much for commenting. It's nice to find someone who knows exactly what it's like. I see her pain and it breaks my heart. I try to be as supportive and patient as possible because I can't imagine what it's like to deal with. I know she's doing the best she can... Do you have any advice I can put to use on my end? Also, she also has a condition that doesn't allow her to use the "birth control" method (for lack of a better term) or estrogen blocking, which I heard is basically a go to for doctors in trying to manage it. She tried the depo shot but it made things worse really. Unfortunately, it leaves her options significantly smaller. We are thinking surgery may be the only option at this point.

 

[lostforgottensoul]

I've kept mentioning getting into therapy again but her latest response is that talking won't help and she won't feel better unless she physically feels better.

This is partially true. I'll explain using myself.

Im currently 34, back in early '09 i fell off a ladder 3 stories up and broke my back; after 2 surgeries im left w/ chronic pain bad enough that w/o meds i cant walk and neuropthy down my legs; and evem w/ meds i cant do much that even an 80 yr old can do (i sleep in a recliner, i cant ride a bike or even walk my dog, and in non-stop constant pain. I just had a pain pump put in and they are leveling that off as it was the only way to give me the rest of my life as functional as possible as the Dr told me in as little as 5 yrs, even w/ meds, i wouldnt physically be able to work.

I also had severe complex trauma leaving me w/ a diagnosis of Broderline Personality Disorder, PTSD, Generalized Anxiety Disorder & possible but not yet diagnosed attachment disorder (and prob more in the future as i tend to gain disorders).

I say partially because no matter how you turn it, severe chronic pain is VERY depressing and absolutly adds to my symtpoms; so much so that my therapist starts every session w/ how my pain has been that week.

But, therapy helps, though pain is there, therapy helps even if its just to express that it f*cking sucks ass buckets, it helps.

That being said, is she in too much pain to go? Maybe phone sessions to start? And do they have her on any pain meds?

As for what you can do, not much but to be there to listen, support, and encourage therapy. You sound like an awesome partner by the way! You're doing all the right things but you cant take it away from her as im sure you want to and you can help w/ the PTSD either. Maybe even some good cognative thinking sites or good sites for whatever PTSD symptom she struggles with?

Just a few thoughts. Im sorry she and you and family have to go through this. Massive pain sucks no matter what its from!

 

[lostforgottensoul]

To add to my above comment, i agree w/ @FridayJones though my therapist took me and it wasnt hard at all to find (was actually forced into therapy but glad i was), i was already on pain meds, horrible ones but pain meds nonetheless and i would 100% say that stress and my mental state effect my pain and visa versa. So this one is a tough call. In therapy we took it slow and it was already sorta being somewhat controled so i would get that under somewhat control first.

But telling my therapist that being in this much constant pain not able to do much of anything at my age f*cking sucks ass buckets helps lol; but i think its just having an ear to complain to cuz i lack that elsewhere in real life.

 

[ShodokanJenn]

@Kita5789 Things that may help on your end... make sure she knows you believe her and IN her. She probably feels like she is letting you down. Let her know you are proud of her. Make a point of letting her know you appreciate her.

Don't feel like you have to come up with an answer or a cure. Truth is, there isn't one.

Encourage her to get back to therapy. It won't be a magic fix, but it will help. I really do understand where she is coming from in saying it won't help if she doesn't feel better physically. I believed the same thing. Turns out I was wrong.

What pain medications has she tried? Anti-inflammatory medications work better than Tylenol. Most of the pain from endometriosis is caused by inflammation. Advil or Aleve are best. If they are not enough, the next step is often a prescription medication called Tramadol. If that doesn't work, her doctor might consider a narcotic.

Surgery is a good option. It is almost always done laporoscopically. Tiny incisions are made and special cameras and instruments are used to remove all visible endometriosis. There is minimal pain from the incisions. The internal pain can be significant, but it doesn't last long. And for the majority of people, the relief is significant. When we were trying to conceive, I would use norethindrone between surgery and cycles where we tried for a baby. I am unable to take traditional birth control. And the most common estrogen suppression medication, called Lupron, reacts very badly for me. Letrazole is often used to induce ovulation, but when taken daily it actually suppresses ovulation. It works differently than most medications. I'd highly recommend that she see a reproductive endocrinologist. They are best known for being fertility specialists, but they are also the most qualified to treat endometriosis.

If you have any questions, or she does, feel free to ask me here or through the messaging system.

 

[lostforgottensoul]

I really do understand where she is coming from in saying it won't help if she doesn't feel better physically. I believed the same thing. Turns out I was wrong.

I find that to be true too. The more i can get better mentally the better the pain is & visa versa. Some of the "getting worse beforr it gets better" stuff sucks ass though but all in all, if it were me id at least seek out phone sessions.

 

[Kita5789]

@lostforgottensoul wow that is a lot for such a young age. I am sorry you've had to go through that. She is similar, though not quite to your level. She's 32 and before this already had back/spine/head problems after being hit by a car. She shouldn't be working technically, but she gets up everyday and does her best and I think it's a good thing that keeps her going. She has a lot of pride and I think that may get in the way sometimes. I honestly am not sure the exact reason she hasn't gone back to therapy. There's different reasons each time I ask. I know that part of her realizes it may be necessary, because SHE has brought it up but there just hasn't been any follow through. I also know that she has done a few phone sessions a few months ago, but not sure if she has since. But I think that's worth a try. She's a very introverted, private person in general. I try to do what I can but just trust that she has best through similar situations and that she can handle herself and make the right decisions for her. And thanks so much for your kind words! We are also in a long distance relationship, which has its perks and downfalls. Especially right now when she isn't able to communicate with me often, and communication is all we really have..
@ShodokanJenn thank you :) she is on heavy pain meds, I think narcotics. And they don't do much sometimes. Plus she hates the feeling of "being high". Sometimes I think that the constant exhaustion is what really gets to her. She definitely feels guilty and like she's letting me down. She pretty much said those exact words. I try my best to never make her feel that way, but I suppose it's natural for her. I know she feels that way about her daughter also. I think seeing a specialist is also a good idea, especially since her case is not the typical one.
Thank you all again, your support, kind words and knowledge and appreciated so much

 

[lostforgottensoul]

She shouldn't be working technically, but she gets up everyday and does her best and I think it's a good thing that keeps her going.

Its actually a very good thing for her mental health to keep working. I was out of work for 2 yrs after and living w/ my dad and i about went mad! I was at the time 30 and couldnt work living w/ my then 70 ye old father, its a HUGE hit to your self essteem that you cant make it on your own.

Plus she hates the feeling of "being high".

I CAN relate to this too. I was on Oxys before i am what im on now that dont make me high or loopy.

Let her know to ask for a different kind or a different mixture as they are out there and what im on now is actually stronger but doesnt give me that "doped up" feeling.

Long distance can be hard for both. Hang in there! :hug:

 

[Once sublime]

I fully understand what she and you are going thru. Endo is the most painful thing to go thru next to migraines, just my opinion. I had stage 4, 15 laparoscopies and finally a hysterectomy. Thru it all, I spoke the very same words as she has...I was plagued with guilt for my boyfriend watching and suffering with me. He didn't sign up for this I would tell him everyday. Thing is, the pain is constant, depression sets in, guilt for all of the things I could no longer do, anxiety is devastating and all of these hormones spiking and feeding our emotions and ailments, never ending. Help her to remember it is hormonal, each emotion, wether it's cortisol or estrogen or pregnenalone. It's not her going crazy, it's her hypothalamus and pituitary and adrenals and gut thru the vagus nerve running her life. Vitamin E 400 Iu daily, up her fiber as excess estrogen is stored in the gut, cut out all PBA's which mimics estrogen. Deep breathing to keep anxiety down is huge, don't wait for anxiety to practice this. I would steer clear of male synthetic hormones that her doc may recommend, but the choice is for you and her to decide. It multiplied my emotions beyond my control. There is an amazing site called holistichelp that will explain so much for her. I wish I knew then what I know now, so I share this amazing site for those going thru what I once did. Best of healing to u both