Other Somatization disorder (or similar diagnosis)?

[Chava]

First, I don't have a diagnosed somatic disorder. I'm seeing internal med. doctor, ob/gyn, a therapist, and have done (unhelpful) physical therapy... for eating disorder, chronic pain (localized in upper back but can take over whole upper body), bad bleeding and cramping and hormone disruption (assumed endometriosis but I canceled laparoscopic surgery), and complex trauma (seeing a somatic/SE therapist who considers it global high intensity complex trauma, related to various traumas, including assaults/abuse, but likely primarily rooted in early medical near-death and relational trauma). Pain creates meltdowns for me. I'm almost used to low-level pain and it allows me to isolate and keep life "predictable" but if pain tips beyond what I feel I can manage or tolerate, I get pretty crazy.

Supposedly the best researched therapy for this sort of thing is CBT, but I've found that to be unhelpful and even invalidating. To a point I certainly try to go about my normal activities, but I'm also trying to not ignore my pain because I tip easily into numbness and not noticing basic cues like hunger or tiredness, etc. CBT always feels like it's telling me to change my senseless thoughts and perceptions. The somatic and trauma approach feels more helpful because I have gotten better at staying connected and like I'm actually inside my body, and trying to respond to pain gently and prevent the meltdown scenarios. Along with anorexia, alcoholism, self-injury, pain, and the pelvic problems, I've had temperature issues, heart arrhythmia, and some breathing problems. These were all real (checked out at clinic or ER) but benign...not life-threatening and source unknown aside from presumed exhaustion or stress. It just feels like I'm crumbling. And there is a lot of emotional involvement in this, especially the pain. I become really disconnected, and it even feels like my pain is a separate part I can't get away from but cannot feel or respond to as "me".

Unfortunately, the therapy I am doing probably won't be covered by my new insurance and I won't be able to afford it all out-of-pocket.

So, my question(s), I don't know if it would make sense to seek a new diagnosis to either be referred to someone in-network (all "talk" therapies I loath) that might at least have some somatic or somatization specialization. ? Do any of you have a somatic disorder diagnosis? From the little I understand, it seems like one of those things that aren't even diagnosed. I've only seen a psychiatrist once since these symptoms became so problematic, and that was for the pill that would help me quit smoking. He creeped me out. But really, I've taken all the major psych meds in the past and that's all psychiatrists have done for me. My doctor and therapists have not pushed me to see a psychiatrist. Meds have always been bad for me (ended up hospitalized for a couple months after being put on an SNRI). But I don't think my therapist can diagnose things like this...maybe something a doctor and a psychiatrist figure out? I don't love labels or diagnosis, but I wonder if this would help possibly make a case to new insurance company so I can stay with current therapist. ?

I just don't know what to do. I can talk with my therapist some, but she can't help with most of this, and maybe I won't even be able to see her long. I need to figure it out with the insurance company and don't think I can make a case for somatic-type or somatization-focus therapy with just anorexia, pain, or ptsd diagnosis because to others those look like separate issues that have separate specialists within network covered by insurance (talk-centered e.d. or trauma specialists and physical therapists...have done all that for years and it was not helpful). I don't believe all of my problems are separate and disjointed and I don't want to see a load of specialists...just a good doctor and a therapist that understands the connection and can help me continue with somatic awareness, regulation, safety, and gentler and less disconnected responses to pain.

I don't really want (or think I need) some additional diagnosis. But I'm wondering how it has worked for others with somatic type disorders (if that's even what it is), if it's worth finding another route, or if there is even good help. I feel like I'm going to just be left feeling disabled for life. I'm trying to gather info and remind myself that I can keep working through this somehow. Sorry this is so long and probably hard to follow. Thanks if you read it.

 

[Nighthawk]

I wasn't able to read all of it in one go but i willl read the rest later. When it comes to the pain and certain levels pushing you over the edge I so get that. Also it is a very visious cycle as PTSD makes our cortisol level high wich can increase pain and inflamation. And pain creates our anxiety and symptoms to ramp up.

I hope you can find the right insurance as I have been struggeling on the new health system being covered in a lot of areas. I also know it is time to re enrol.

Just want you to know you are most definetly not alone in what you posted.

 

[Chava]

seems like somatoform type problems aren't understood very well but I heard one theory was that there might be some re-wiring, like instead of having emotions, the brain signals the autonomic nervous system and the "feelings" get somaticized (also early trauma can encode things this way). And that makes a lot of sense since it was never very okay to have feelings (emotion-feelings), and while I'm sensitive and probably pretty emotional (can feel emotional meaning of music very deeply), I don't actually feel many emotions. I've either been numbed out or in all this pain, with very little ability to explain either. So "talk" therapy makes me feel very stunted, stupid, foolish. I like having a therapist who can know my pain is real and help me understand the body communication so I can try to understand the pain differently and not just feel attacked and trapped by it.

 

[Powder]

Wow, You explain all of it really well. I'm sorry this has become very symptomatic lately for you.

As tough as daily life is with complex trauma from childhood, I think there must be found at all times a balance point. Getting into all kinds of therapy is a way of heading into the storm, and taking medication for anxiety and sleep is a way of resting from it so it doesn't lick you or get you too run down.

I have found that it's best for me personally to err on the later. I've gone in, ready to tackle it, and been quickly burnt out in both physical and emotional ways. If I pursue things like I tend to, I cannot sustain the effort without caving in on myself.

Have you tried taking the meds that are customary for PTSD and what has worked for you in the past?

Is your stress higher overall lately? What is getting to you?

I hope these are starting places to reflect on what's beneficial to you for a while.

Thank you for sharing better than I have what early child PTSD is like as an adult survivor.

 

[Chava]

Thanks @Muse . I actually only see my therapist a couple times a month because I have to travel. But before I saw her I was seeing talk therapist, physical therapist, doctor, nutritionist....I know how too many specialists can burn you out!! So if I have to go back to regular talk therapy because that's what might be covered under my new insurance, I just won't. I'll be whining about pain all the time, they won't know what to do, and I'll be sent to another physical therapist....so it's like they split my body-mind for me, when I'm actually trying to get it together better.

No psych meds have worked for me. I've done SSRIs, SNRIs, NRI (nnri?), some anit-psychotic I don't remember, and probably some other atypical stuff I don't remember. My doc won't prescribe benzodiazepines because I've been in treatment so many times for alcoholism. Flexeril helps some (muscle spasms). Painkillers help me function, but don't do a damn thing for treating the source of the pain, so I use them minimally. At some point maybe I find a psychiatrist who deals well with chronic pain patients. But I'd love to just feel better without meds...often medication feels like another unpredictable body invader and cuts me off from listening to my body.

The pain is bad right now because of a mix of things I don't want to get into today, but I assume part of underlying struggles has to do with psycho-social stuff like isolation and how I have (or don't have) emotions. I don't express feelings with others easily and I continue to get worse at it because I've physically isolated myself (and this feels like the safe and comfortable parts of being a kid...just being on my own, but I understand it's not healthy maybe forever). I can't afford to relocate right now, and even in a big city I keep a wall around myself, so not sure it would matter if I moved out of the sticks. I don't feel very connected to anyone. My body feels better when I hug my dog, so I know there is something to this lack of connection and not knowing how to manage or express feelings all on my own. I don't feel them, I don't feel lonely or sad or angry much, I just feel pain. If it's bad, I can have a total meltdown, but at a reasonable level it probably dulls all possible emotions for me. I try to do some artwork to at least express feelings other ways, but I hate my artwork when I feel really disconnected.

 

[Chava]

Here's a short article that feels validating. Even if I don't have diagnosable somatization disorder, I don't understand how something like CBT could do anything other than make me feel stupid through messing with my head and trying to tell me pain isn't real or my thoughts are flawed.

The symptoms are real and are not under the person's conscious control."
"It is possible, for example, that people with this disorder perceive bodily sensations in an unusual way. Or they may describe feelings in physical (rather than mental or emotional) terms. Trauma or stress may cause a person's physical sensations to change."

http://www.drugs.com/health-guide/somatization-disorder.html

 

[Em C.]

I have what I would consider severe somatoform disorder (sigh) and I've kind of figured it out on my own. But if you have questions feel free to ask!

 

[greenleaf]

Hi, @Chava.

I just got an electronic copy of this new book that I'm really liking, that has some very relevant stuff to your post here. Van der Kolk isn't a big fan of CBT for complex trauma survivors... There's research cited in the book supporting his position as well as numerous other therapy types.

Well, "liking" isn't quite the right word all the time; I'm pretty variable in how much I can read at a time. But I think I would really like the author.

He's in the Boston area; not sure where you live...

You can read snippets of it on Amazon.

The Body Keeps the Score: Brain, Mind, and Body in the Healing of TraumaHardcover – September 25, 2014
by Dead Link Removed (Author)

 

[Nighthawk]

There are somatic therapists. Also you can look into the book Walking the Tigger by Levine. Its all about trapped trauma in the body.

I struggle with this greatly but could have never gotten it into words without falling apart.

Thanks for posting

 

[greenleaf]

@Nighthawk, love your title for Levine's book! :D

 

[greenleaf]

@Chava, what kind of physical therapy have you had? Maybe that can overlap with somatic therapy some, but actually be covered by insurance? My PT person is really helpful with my muscle stuff, and muscle things with associated emotion blobs feel so vaguely connected to those emotions that usually there is quite a gap in time before I can verbalize whatever the thing is (like hours or days), so I might as well be in the regular T's office for that part. This PT seems really well educated; also I've been trying to give bits of feedback and tiny bits of trauma-related stuff to clue her in to what is helpful. I keep feeling surprised that she hasn't told me I'm making it all up (yet). :rolleyes:

 

[Chava]

Thanks @Nighthawk and @greenleaf , I have been doing primarily SE (my therapist has other somatic and movement modalities she uses, but primarily SE is how the therapy works). It feels right, but this also isn't going to be covered by my new insurance. The only hope would be making a case (no SE or somatic therapies in their network, so somehow probably pointing out that I've done a load of CBT and "talk" therapy and that didn't get me anywhere).

Physical therapy seems helpful for injury and acute pain stuff. It didn't make a dent in the chronic pain stuff (have done several years worth of PT, four different therapists in three clinics...I believe they were all good, but the approach never did much). Beyond the right kind of psychotherapy I actually think yoga and Pilates is more helpful than PT for me because it's more body-mind and system focus, vs trying to strengthen one set of muscles with the assumption that my pain will go a way if I'm stronger (has not been the case). But I know it's important to feel empowered and not trapped, so I do walk and do some of this movement stuff or take lessons or classes when I think I have a few extra dollars.

I don't know what will end up as the outcome here. I'm not sure I want to check on somatoform diagnosis (I guess it's called "somatic symptom disorder" now and I fit that easily, but it's so new, recently changed in DSM, and poorly studied, so again all they point to is CBT). Even though doctors are supposed to know that somatoform pain is still REAL pain, I'd worry about some issues not being taken as real physical complaints, like I probably have twisted fallopian tubes or something but canceled laparoscopy because of all of this other pain stuff and intolerance. Anyway, an appointment in rheumatology and maybe something like biofeedback would be covered by my insurance. It's NOT trauma therapy but I just don't want to be on pain meds forever. :banghead: Turns out the stuff I'm on shouldn't be given out to chronic cases anyway. :poop: I've seen some family members crumble and deteriorate in every direction from chronic pain...I don't feel good about the big clinic and mainstream ability to deal with chronic pain. Having some kind of somatic therapist makes sense because there is the emotional component too.

I've read a couple of Peter Levine's books...not Van Der Kolk books yet, but I've come across some of his writing and I really appreciate his voice and viewpoint.