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Hello Zebras, I have not been diagnosed with EDS but I strongly suspect it along with OI. Reading through these posts and watching the videos, I can look back and say OH! Thats what that was…LOL Anyway, I had Tethered Cord Surgery at age 36 when I wound up in a wheelchair after a chiro adjustment. Wasnt anything he did wrong, my body just didn’t handle the adjustment. I actually have quit seeing chiros as every time they adjust my neck I can’t move it for about 3 days and I get MASSIVE headaches. Like the last time I rode a roller coaster, I thought my head would explode and I couldnt move my head I was so stiff. My daughter had to drive us home…anyway, back on topic. 5 years after my spinal cord surgery I fell off my horse and landed right where they did the surgery. I broke the sacrum and coccyx (which remains 90 degrees forward) and over time I developed complete bilateral Pudendal Nerve Entrapment requiring surgery. Because no one knows about PNE it took me 4 years to find a doc that didnt call me crazy and another year of testing before surgery could be done. I am ashamed to say that even after being an RN for 20 years, I knew nothing of collagen disorders. I was told that Tethered Cord was a birth defect and that I probably made wierd scar tissue inside. I assumed that contributed to the total entrapment of the pudendal nerves by scar tissue. Never thought to look any further. So, just curious if anyone else has PN, believe me you know if you do. It is excruciating burning, stabbing, electrocution, stinging, aching, crushing, blowtorch like pain in the vagina, clitoris and anus (or similar male parts, guys get it too) or do you have this type of pain because of EDS?
Second part, if I take a calcium supplement..any kind, even veggie based, I feel like I have been beaten with a baseball bat. Now, I hurt 24/7 with nerve pain and muscle/joint pain as it is. Actually I rarely even mention my non-nerve pain as it seems minimal to the Pudendal pain but when I take Calcium…holy shite!! I feel HORRIBLE. Now, my motto is If you take something and it makes you feel like that, don’t ever take it again LOL so I dont but its just a curious thing. I watched a video that Dr.D did and she mentioned that Calcium stimulates or releases Mast cells….Could this be an indication that I have Mast Cell issues? I feel like I do, I have been blaming it on a Latex allergy because when I eat strawberries, bananas, avocado etc I get a rash and itch. My skin is hypersensitive, well so is my ears, my nose. I thought I just preferred QUIET and didn’t like stinking stuff LOL Thoughts anyone?
Sorry, I’ve never come across PNE, several of us have coccyx/sacral pain but not heard of anyone complain of this one before but the post stays open for 90 days, so someone might come forwards. Often people read these posts but don’t have the energy to reply at the time, so don’t be disheartened.
You’re not on your own not realising about collagen issues, it’s something very few doctors consider either and, unless they suffer from it, they certainly don’t understand the depth of how it affects people, many thinking I’m sure, that it’s just superficial. After all, I see many people who are obviously hypermobile, going about their business without any difficulty or pain whatsoever, so there must be something more going on than just hypermobility, after all, in many of our cases it has a detrimental effect on each and every bodily system.
More often is the case that life is good for us until something comes along to trigger this condition, in my case it was a head and neck trauma, which injured the ligaments at my cranio-cervical junction and left me with autonomic nervous system problems, for some like Dr Diana it was a virus, which makes me wonder if the common denominator is ‘sweating’.
I need to say at this point that anyone who knows they have hypermobility should stay away from roller coasters and trampolines, as they can have dire consequences.
Regards
Barbara
(UK)Thank you Barbara. I completely understand not having the energy to respond. PNE is another one of those Rare things that doesnt seem to be so rare. I was just curious.
I can see why they could be missed. All these things have their own diagnosis, it’s not until you step way back and look at the whole picture that things start to add up. I see my GI tomorrow to see how he wants to procede with this colonoscopy. Any precautions we should be taking just in case I do have EDS? The last thing I need is a bowel perferation!
I saw how Dr. D’s was triggered by a virus. The only thing I have been doing different is some trigger point injections using B12 and Traumeel. I doubt that would do it? Why so unstable so suddenly? Have I always been this unstable but are just now noticing? I have been paying acute attention for the past few days and I can see where I have been naturally bracing myself. All these times I have to reposition due to pain, it is almost always where I am hyperextended or flexed. The pains I feel when I walk, I can see where my ankles roll a bit and my feet are flat when I stand. My hips sort of roll out to the sides, not a sexy sway more like my leg bones LOL not sure how to describe that…anyway, I can totally see where much of my slow deliberate “guarded” movements are all around bracing myself from hyperextention. Also been noticing how many times a day I am putting something back into place. Is this all new or had I just adjusted over the years? Crazy!
I can completely relate to your experience with Calcium! I have EDS and Mast Cell Activation Disorder. I was just recently diagnosed with MCAD only after receiving IV Calcium infusions in the hospital for 4 days straight. I had a thyroidectomy and my calcium levels dropped following surgery requiring me to be admitted. I began having strange symptoms even in the hospital like itching and flushing but it got worse over the next week once I was home. I had hives all over my entire body and angioedema. Within a week I ended up having an anaphylactic reaction requiring an epipen injection due to my throat swelling shut. That was the first allergic reaction that I have ever experienced in my entire life. My Rheumatologist is very good and she suspected MCAD after that reaction so she sent me to a MCAD specialist in Atlanta which led to my diagnosis. My thyroid surgery was early in September and because of the Calcium reaction my body is still completely flared up and in so much pain. I will definitely never take Calcium again. I am sorry that you are having such a hard time. It is nice to know that we are all in this crazy thing together!
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