I can’t bend properly due to joint problems and when I lean (began trying that as an alternative) it sends me into a wicked frenzy of debilitating symptoms. Awhile ago, I finally became so frustrated/devastated by that that I hysterically inquired of a reliable source (not Dr. Diana) why on earth my arms and wrists wouldn’t hold a tissue and when I would drop my ‘snot rag’, I couldn’t even pick it up. Oh my gosh, can’t even pick up own ‘snot rag’. Far cry from my identity -that one. POTS was mentioned to me again which returned me to Diana. She’d mentioned it to me awhile ago and I was too overwhelmed to accept an additional ‘issue’ at the time. I sorta ended up telling myself, “Yep, I spend my days on the pot and that is enough for me”. I withdrew myself from the idea of POTS. Well, after this alternate source AGAIN mentioned POTS, I had the umph and/or courage to come back to Dr. Diana and search for answers so that I can advocate for myself and my children. On a better day, I try to learn -try to make some sense of my body’s horrible and illogical betrayal of the very strong mental willpower that I’ve always enjoyed. My ‘will’ had always given me security, a sense of safety, independence, and a ‘can do’ identity! I’d always thought of myself as the ant that CAN move the rubber tree plant and my waif-like frame would always push forward. I would, sometimes, even sing the song, “Anyone knows an ant can’t move a rubber tree plant” but I would – I’d move it! Sheer willpower! Mind over matter! That began deteriorating about 10 years ago, in hindsight. I never let it bother me, mind you, because, after all, I’m a chick and a waif-like one at that, and it’s fine if God didn’t make me ‘sporty’.
Tethered cord was mentioned to me as well but I don’t remember if it was told to me as something to look into with regards to the nightmares that leaning causes me. I know that I feel as though there is a ‘too short’ rope in my spine. When I lean my head or move it (not every time so severe that it ‘breaks through’ as a layer above all of my other nightmare symptoms) it has a dreadful tugging on my lower spine/knot of bones/’my tail’. And visa versa.
I am, personally, positive that I am contending with dysautonomia. I am, however, not positive that I meet the text book definition of POTS – not saying that there’s not a great chance that I do but I wouldn’t swear to being exact same precision reaction each and every time I stand up. So crazy and all over the board.
Tethered cord, I haven’t really looked at as of now. It usually takes me awhile to even consider attempts at mentally ‘digesting’ possibilities. PLUS, I feel horrid every day (which doesn’t help either).
I will say that when I first started examining Dr. Diana’s site (when I returned to her after a several month sabatical of denial), I was only accepting of EDS, fibromyalgia and the chronic fatigue. I only had interest in figuring those out. I also was desperate for a place to ‘vent’ my questions about my terrible health after the doctors has been so abusive. Plus, my genetic doctor recommended support group (which I was involved in a diff one). Anyway, I am learning (at least for myself) that the reason Dr. Diana mentions all of the health topics is because they are COMORBID! I hadn’t considered that – hadn’t wanted to or been willing to. I’m sure I’m correct about this. She is the one studying and she’s the one working with the cutting edge specialists. I’m sure there is a reason she listed the conditions that she did. I will have to check into them bit by bit (as I am mentally and/or physically able).
I’m currently wondering about Chiari. Really not educated but think I should begin to look at it. Does it have any connection to tethered cord? I’m literally completely ignorant and just trying to psyche myself up enough to have the courage to take a peek. My legs have been a nightmare and without circulation (or so I think) – freezing and painful – for days now. My lower back is an absolute nightmare in ‘my tail’ region. Two days fighting a migraine – yeah, was successful at keeping it to only a 2 day headache. My stomach is a disaster too!
I hope and pray that all of Dr. Diana’s research ties this together and makes sense of it so that I can present to my doctors for proper treatment. God willing, at least they will stop MIStreating me!
I recommend checking into all of Dr. Diana’s research. I think CCSVI has to do with bending. I sorta get it but it is psychologically painful to have to learn about having something so ‘rough’. When I asked a non-PCP doctor she said that it was very technical. I’ve taken a break from learning about this but think it may be applicable regarding bending. You may be able to absorb more than I and might check this out. Also, there has been tons of posting with regards to this and you may wish to read the other posts. It seems that nobody can bend.
Bottom line, check into what Dr. Diana says and answers may be ‘right under your nose’. I plan to continue my understanding as I am able. Then I have to figure out how to present to doctor.