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Hello, thanks for this site. A doctor recently suggested I have EDS but I’m being sent for diagnosis in rheumatology and genetics. I’m not sure the rheumatologist is actually a rheumatologist so am not getting my hopes up. I know many docs don’t even understand EDS. I’ve been in pain for several years, on painkillers and muscle relaxants. I had to quit playing violin professionally, and it’s like you have to have a meltdown in their office in order for some doctors to understand that this is not okay. The pain itself is enough to make me crazy, then add in sucking my soul away, you know? Holy crap.
Long story short: I’ve always been hypermobile in most joints (and also a little marfanoid). My shoulder was getting it worst and had lost almost all stability. But what really triggered the pain nightmares was recovering from an eating disorder. I was supposed to come out stronger. But almost immediately my hormones became chaotic and pain followed. I could feel for 1-2 weeks a month where my arms were almost attached to my body by threads. And it was phyiscally hard to hold myself up (also needed knee braces).. pain sitting, even when standing, and just exhaustion and even wanting to die if I can’t find the right doctor. I’m afraid to even bring up the hormone thing since the couple doctors I’ve mentioned it to don’t understand the connection. To me, it’s clear. I’m hypermobile to begin with. But a bad turn in my own chemistry has triggered some bad laxity. Since I need my upper body for my work, the muscles are in chronic spasm at this point, trying to hold my arms in place. I love my work but am behind and also feeling like I’m not doing good enough anymore. All those icky feelings of living with pain.
Recovering from eating disorder the hormones were supposed to normalize. Well, they did to a small degree. But none of this pain leveled out…it’s been five years and getting much worse lately. I wake up with head and neck pain daily and struggle to hold myself up by 11am because I’m so fatigued fighting gravity by then. I’m not even 35. I’ve done physical therapy for several years but different therapists and doctors have noted that my muscles seem fine, well-developed and well-proportioned for my frame. Recent doctor that suggested EDS was the first to spend over an hour checking and observing and talking to me and realized how hard it was for me to sit in a chair. So in spite of most bones and muscles looking okay suggested a different structural issue. It all makes sense. But I don’t have any diagnosis right now.
Is the hormone connection common? Are there good resources? Or ways to bring up with a doctor? I’ve tried hormone pills and IUD….all made my life pure hell and sometimes laxity was worse. But pain has been even worse off of them and I’m hoping it’s a transition. Can’t hold my arms up long without trapping a nerve in my neck, or having spasms in my back. Trying to stand or sit for long feels like a knife in my spine. My MRI is okay except my cervical spine is curving in the wrong direction. Migraines, accompanied by body temp crashing to 96, and what a radiologist called Chairi (but neurologist said it’s okay, enough spinal fluid…but looking at my neck I wish someone would order an upright MRI!). I’m afraid I’m a bobble head and nobody can help me. But mainly I’m interested in the hormone connection…or really just getting official diagnosis first I guess. Not thinking perfectly because I hurt and I want it to just stop…end of my rope. Sorry for the confusing mish-mash post. Just looking for others who relate too because my family seems to think I’m just a mental case.
I can relate. I recommend you send your MRI to a good Chiari neurosurgeon. They should order another MRI and they are educated about EDS. One possible hormone connection is if you have Empty Sella like many Chiarians. Another is EDS patients have trouble keeping their vitamin D3 levels up. D3 is an extremely important hormone.
Hello Stray Tulip
Your story sounds very similar to mine except the trigger was hitting my head on a door whereas yours was an eating disorder. Neurosurgeons and other Consultants have been unable to explain the amount of pain I am in and it was only after having an upright scan that Chiari was recognised as well as an injury to one of the vertebra in my neck. Now, like you, I am living with pain constantly and have gone from one doctor to another without finding an answer.
Last week I saw a Neurologist who asked lots of questions about my family and examined me thoroughly. He suspects I have EDS and has asked for autonomic testing. I didn’t realise I was hypermobile until he asked me to do a few things and said that most people are not that flexible.
I suspected that a dental implant I had four months before hitting my head may have caused a weakness in my neck and a blood test showed that I was allergic to titanium and had metal toxicity. Unfortunately, I can’t have it removed yet but you could see an allergy doctor to see if anything is causing a problem. I think people with EDS are extra-sensitive.
Dr Diana’s book would help you understand more about EDS and what you can do to help yourself without having Chiari surgery. I recognised so many symptoms that she describes and think that I have probably always had this syndrome without any real negative effects until it was triggered by trauma.
Best wishes and hope you find some answers.
Thank you Brenda, I have not been here for a while. A genetics doctor said no connective tissue disease because my knees are normal and arm span is normal and no major heart problems in my family. But she said I definitely have hypermobility issues but should see physical therapist. So I don’t know what this is. This week has been pretty bad and my medications aren’t working well anymore, but I see a new physical medicine doctor soon.
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