1. SPS Accounts:
    Do you find yourself coming back time after time? Do you appreciate the ongoing hard work to keep this community focused and successful in its mission? Please consider supporting us by upgrading to an SPS Account. Besides the warm and fuzzy feeling that comes from supporting a good cause, you'll also get a significant number of ever-expanding perks and benefits on the site and the forums. Click here to find out more.
    Dismiss Notice
Dismiss Notice
You are currently viewing Boards o' Magick as a guest, but you can register an account here. Registration is fast, easy and free. Once registered you will have access to search the forums, create and respond to threads, PM other members, upload screenshots and access many other features unavailable to guests.

BoM cultivates a friendly and welcoming atmosphere. We have been aiming for quality over quantity with our forums from their inception, and believe that this distinction is truly tangible and valued by our members. We'd love to have you join us today!

(If you have any problems with the registration process or your account login, please contact us. If you've forgotten your username or password, click here.)

Cane and Able: #12 What I Can Blame on EDS

Discussion in 'BoM Blogs' started by 8people, Dec 2, 2010.

  1. 8people

    8people 8 is just another way of looking at infinite ★ SPS Account Holder Adored Veteran

    Apr 20, 2002
    Likes Received:
    I was recently linked to this on the topic of EDS and headaches but reading it is like reading an alternative dimension me. It's a little creepy.

    From the Neurological aspect: I get headaches easily, probably related to stress I think, I get more headaches when it's rainy, which is also when my joints hurt more so I'm stressed from that, I get dizzy a lot standing up and when I bend over I get dizzy and feel like I will be sick. I haven't been tested for Dysautomnia as the process of being tested means a tilt table whilst linked up to a drip and having several injections. Neither of which goes too well with my condition, my phobia or past experiences! I get terrible neuropathic pain, usually in my legs, it makes me miserable, my current medical cocktail seems to help it a lot at least for now.

    Musculoskeletal aspects my joints dislocate constantly, I've even had vertibrae slip and move in my back which is hellish, proprioception and hypotonia is also associated with my dyspraxia so I can't tell how much each condition effects each aspect as I've never had the conditions separately. I have a lot of scarring, even slight weight change results in scars and marks, I get bruising randomly and often with no real evidence of cause. I have noticed my bruising is worse after exersize, common theory logically suggests that this is due to the leaky veins and capillaries due to the tissue having microtears, when pressure is increased during more vigorous activity blood seeps out the vessels at a visible rate, whilst at rest there is less leaking so it dissapates a lot quicker.

    My skin is velvety, it's very soft, very smooth, not stretchy or elasticy in any way. I once had a fellow EDSer claiming to have the velvety skin was, after a cursory look it was a case of they had non stretchy skin but with the elasticy texture - it feels smoother, almost artificial, but not softer. It's very difficult to describe, one person has described it to a soft putty, but I think that's just disturbing to think I feel like nice clay :mommy: I do heal very quickly though, which is one of the perks, most EDSers suffer from slower healing, I heal very quickly initially but scar terribly, so I guess it's a tradeoff. Cold intolerance again can by a dyspraxia thing...

    I'm a bleeder, and so is my mother, she had an operation on her back once to remove a lump and she coughed while the doctor was cutting. A doctor who had left the room came back, looked around and went "WHAT THE **** HAPPENED IN HERE?!" he was literally gone about two minutes :lol: I'm hoping in the future the extent of vascular involvement will be limited to bruising, but I've already had medications that have made my heart do funny things and there is a history of heart trouble in my family as well. Let's hope I get lucky! Think I've got a hernia, but not worth getting it checked out yet really, my insides wiggle about a lot, sometimes can see stuff move about when I shift position there'll be a moment and then can feel a slip and see everything just move. Could be normal though, I've never asked anyone how wibbly their internal bits are.

    Acid reflux, ulcers and rupters in the digestive system are old friends with me.

    I've had penumonia which has left me with less lung capacity, most likely still have scarring there, no asthma though my mother developed it as she got older and allergies I roughly develop one every other year, ranging from mild discomfort to anaphylaxis.

    My hearing has an excellent range, but I have noticed the depth getting worse. I have trouble hearing people now, part of me is utterly terrified of realising I'm losing my hearing, another part is wondering what colour hearing aids I'll get first. My mother has bright green ones but she couldn't afford to get the ones with little blinking LEDs in them. Most people presume it's a bluetooth headset. My eyesight is also pretty poor, I usually can get by pretending I can see fine to be honest, I have dents and scars from when I wore glasses which are a bit painful, my current pair of glasses are simply not strong enough for my eyesight to be worth the discomfort of wearing them. I think I'd like contacts but most of them are only available in natural colours. Growing up when I was little I was almost certain my mother was green eyed until they discontinued her contact lense brand and she went to wearing transparent ones. One of the things I enjoy about contacts is how vivid and colourful they can be, but if I want that with prescription ones it will cost a fortune. I know my medications have also affected my eyesight, I remember one of them within a few days of being on the tablets I noticed my eyesight was worse, and when I came off them they didn't improve much, not too happy about it, but what can I do?

    Sleep is affected by aspergers as well, but I sleep badly when the weather or temperature conspire against me. I sleep a lot better with another person in the bed with me but a lot worse in the same room but different bed.

    Pregnancy complications I can't really comment about on though... looking at my mother prospects aren't really that good for me. Only thing on my side is that now I know what my condition is, and now Jane knows she has it, it means if we need a specialist to help, we can find one easier by condition.
Sorcerer's Place is a project run entirely by fans and for fans. Maintaining Sorcerer's Place and a stable environment for all our hosted sites requires a substantial amount of our time and funds on a regular basis, so please consider supporting us to keep the site up & running smoothly. Thank you!

Sorcerers.net is a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for sites to earn advertising fees by advertising and linking to products on amazon.com, amazon.ca and amazon.co.uk. Amazon and the Amazon logo are trademarks of Amazon.com, Inc. or its affiliates.