PTSD is a Pain in the Neck!

I wrote this post from my phone app. I can’t get up. Dysautonomia isn’t known for verticality, but it is known for coat-hangar pain. Coat hanger pain is neck and shoulder pain that mimics a coat hanger in shape.

My current back pain is much worse than the coat hanger pain I’m used to. I often pull or twist something in my sleep, but this pain is on another level entirely. I couldn’t move even if I wanted to tough it out. I was too embarrassed to tell HR that I “threw my back out” when I called. I may be an older millennial, but I’m still a millennial! I’m too young for this?

I’m researching what it means to “throw my back out” to determine if that’s even an accurate statement. I’ve been in enough coat hanger pain to believe I couldn’t move, but I could theoretically have passed the “flee a fire test.” Not today…

My boss is uncomfortable with personal details – even details as innocuous as that I asked off for the long weekend to attend my partner’s cousin’s wedding – and I know he won’t ask. Others might, and I might be too embarrassed to tell. I’m supposed to leave for that wedding tomorrow. Will I be able to get on the plane?  Thank heavens we booked Southwest. If we end up not being able to go, at least we can cancel and still use the credit later.

The cause of my predicament was a nightmare. Literally, a nightmare. I managed to twist during one and hurt my back. Talk about adding injury to insult.

I initially self-diagnosed dysautonomia. I trusted myself because there were clear clinical criteria that I could reliably demonstrate. I fear not being believed, and being seen as a hypochondriac instead of someone who follows the scientific method is re-triggering. The expected outcome must be worth a lot to push back with doctors. There must be a preponderance of evidence for whatever I’m bringing up.

I pushed – and was ultimately vindicated – for the dysautonomia diagnosis. I haven’t pushed for any other testing because no other symptoms have met my personal standards of evidence for additional diagnoses or treatments sufficiently to be worth risking my hard-won street cred with my doctors.

I’ve read a couple of posts recently in which bloggers with dysautonomia have been referred for genetic tests for Ehlers-Danlos. I’m able to do most of the random things their doctors have mentioned as potential signs (e.g. tuck my toes into my armpits while standing, suffer TMJ, bruise easily, Flying Bird hand sign and Reverse Namaskar.) However, there are diagnostic criteria for EDS that I don’t currently meet. I am a 4/9 on the Beighton Scale. Further testing for EDS or the related symptomatic hypermobility spectrum disorders are usually indicated at 5+/9.

My rheumatologist administered it at our visit. I used to be a 5/9. For most of my life I could additionally forward fold to touch palms to the floor in yoga. He wrote “benign joint hypermobility” on my chart and said there was no need for further assessment because I wasn’t 5+/9 currently. I wondered about that later, since my brief reading of the criteria seemed to indicate that historical mobility counted. I’ve been curious about whether he should have recommended testing – especially after seeing others recommended for similar levels of hypermobility – but it has been purely intellectual curiosity. (I’ve also wondered why others have received iron transfusions for low ferritin levels that I display every time I run out of iron pills/my ADHD brain forgets to buy more, while I am told that I should just keep taking pills. Stylistic differences among doctors, I suppose. I’ve been taking iron pills for years, I suppose I can keep doing it ad infinitum. The idea of transfusions building a bit of a ferritin reserve and/or me ever achieving a ferritin level above 20 leaves me wistful, though.)

That rheumatologist was a dismissive jerk. I’d enjoy knowing he missed something in the technical criteria for assessing hypermobility that could be contributing to my dysautonomia and/or chronic pain just for Schadenfreude, but it hasn’t seemed truly important. While I regularly sprain joints, a) they don’t fully dislocate and b) that has always been the case for me. My personal hypermobility hasn’t seemed to have gotten worse as the dysautonomia has progressed. I’ve tended to treat those data points as reasons to assume the hypermobility the rheumatologist noted truly is benign.

I’m mildly doubting myself for not exploring further as I lie here trying to figure out what that twisting/popping sound was that woke me from the nightmare. I also really don’t want to deal with doctors dismissing me if I inquire now.

I’ve been through so many tests already, and the rheumatologist said there was nothing wrong with my musculoskeletal system. I can’t move at all right now, but going to the doctor and potentially opening a can of worms only months after my official dysautonomia diagnosis seems liable to trigger more of the nightmares (and thus more injury?) I’m also, as is anecdotally more common in people with dysautonomia per my doctor, not very responsive to prescription pain killers. Pills alone aren’t meaningful enough as a motivation for me to go to a doctor and explain I hurt myself during a nightmare.

I’d go if I could be sure my injury would be taken seriously. It seems instead like the recommended treatment for a “thrown back” will simply be “take something for three days for the pain and call me if the sprain doesn’t go down.” Not sure that’s worth it.

My nightmare was about a situation in which I lacked choice. I guess it’s only fitting that I may be making the counterproductive choice to avoid calling my doctor about my back injury partly because of its lingering echoes. PTSD dictates my choices even as it never lets me forget when I didn’t have them. PTSD is a pain in the neck!

Need a recap of anything I’m talking about in any post? Check out the Glossary of Terms.


16 thoughts on “PTSD is a Pain in the Neck!

  1. You are having trouble moving, Along with nightmares? Sigh. I hate to say this, but it sounds afully similar to what has happened to me. It feels horrible when your limbs just lock up. Not something I want to reexperinece, that’s for sure!
    In my case I realised it was because of supressed emotions having physical effects on the body. After I balled my eyes out all that tension and stiffness just vanished.
    It takes a terrible toll on the nervous system to avoid feeling them.
    I wonder if this might also be a factor with you? Doctors really need to get with the times.
    Anyway, That was all.
    Just thinking out loud.

    Liked by 1 person

  2. Hope you feel better soon. Do you have osteoporosis or osteoarthritis. Is this acutal bone pain or muscle? Sometimes the pain in the lower half of the torso are difficult to diagnose.

    Liked by 2 people

    1. I saw a rheumatologist one time. He did order x-rays, which didn’t show bone damage from arthritis. He ruled that out as a cause of my joint swelling, and diagnosed me with fibro. Then, when I got diagnosed with Dysautonomia, the doctor said myofascial chronic pain and joint swelling are just part of that package. No need to add another diagnosis: our muscles have to work too hard to compensate for our inability to maintain blood pressure and knot or tear, and blood pools in extremities and swells. (I was in physical therapy for years trying to strengthen my neck enough to take strain off my back, but my issues never went away.) In addition to the back/neck issues, I just seem to sprain things constantly and have chronic tendonitis. Unsure exactly what of those things did it with my back, but now I managed to sprain an ankle this week and my swelling is suddenly even worse in my joints this week, too. I may have to give up, go back in and talk to my doctor about this after all…

      Liked by 1 person

      1. Were you on antibiotics as a child? Have you had Rx drugs for any of the *ozole antibiotics? That might be something to research. Research shows there are some “unknown” diseases directly relating to frequent use of antibiotics. One has to do with ligaments which hold the body skeleton together.

        Liked by 1 person

  3. Nightmares are awful and I can relate to those. I’ve woken up with panic attacks and have fallen out of bed because of PTSD nightmares. They are terrifying and real….the real part is what makes them scary to me.

    Liked by 1 person

    1. Yeah. *Hugs* PTSD nightmares for me are basically a replaying of real things that have happened, but with a loss of a sense of time, such that my sleeping brain thinks that is forever. My partner, the life I’ve built alongside those traumatic parts, all of that goes away. My brain thinks all life is trauma and the good things just…cease to exist for awhile. At night, no matter how much else I have in my life, I am forever in the trauma part of my life only…

      Liked by 2 people

      1. Yessss…this is exactly it. Mine are like flashbacks, but often with an added terror of being like something out of a horror movie. I even had one such nightmare last night. Sometimes they’re so bad that I’m not right all day. I was taking Prazosin for a while (something they also use to treat traumatized vets) but it was giving me wretched migraines and was not worth the slight benefit in fewer nightmares.

        Liked by 2 people

      2. Yeah, I tried prazosin and, umm, fainted from it. Well, that makes SO much sense now that I know how unstable my blood pressure is with autonomic nervous system dysfunction. I can’t take any meds now at night that are known for lowering blood pressure. My BP is already so low I often faint in the morning on my own. I wish something worked that was safe for me!

        Liked by 1 person

      3. Don’t get me wrong, it was effective and I wish I could have stayed on it. I usually didn’t dream at all, which was fine by me. My dreams are never good and feel like life continually wants to torment me even when I’m asleep. Perhaps that’s why it was giving me such bad headaches and leaving me feeling awful throughout the day. But it may have been interacting negatively with the other cocktail of meds that I was on at the time. This is a shitty disorder and one in which people still assume you have to have been in combat or gone through one severely traumatic event to even have.

        Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s