joyce

you are in our prayers, of course. doctors can be scary, so many of them have hurt my husband i get scared of them when he has to see them. take a family member or friend with you whenever possible. take care, joyce

Doctors are not god-believe me. They are generally overworked and go on auto pilot. When it comes to dysautonomias it is so much easier to dismiss patients as 'crazy' so they do not feel 'lazy'. Even mayo clinic, they misdiagnosed gout for a friend of ours!!!! Complicated conditions take a lot of time and energy!!!!!! My husband was sent to so many shrinks and given anti-depressants that made him feel worse. Insurance companies support this behavior by not reimbursing doctors for taking the time to do the correct diagnoses on conditions. check out the good web sites, vanderbilt university has lots of info, keep at it, eventually some things will work and make sense. good luck and take care

Emily, you might let yourself color without looking at what you are doing. Watercolour crayons are great idea as someone posted. You can work on them, come back later and wet them down with our fingers etc. The product is not always as important as the process when you start. the finished product ideas come later whether ist be as framed art or gluing images on wood to later varnish and give wooden trays as a gift. joyce

I think in your post you said you like to scrapbook, if that is true you should consider making collage art. That is using magazine , newspaper photos, any paper element ie; wraping paper, fancy papers etc, You arrange the papers on a backing board such as foam core, cardboard and glue them one on top of the other. Lots of crafts stores have books and supplies for these crafts. some are called decoulage i thnk. let lme know if i can help in any way, i am a textile artist and do drawings for books.

My husband has EDS also and recently has been having similar problems with neck and shoulders. What sometimes works is: hydrocodone for pain, no more than three a day or two days in a row due to constipation problems muscle relaxants on dome days seems to help, SOMA has also helped but causes GI problems Ben gay heat patches are very helpful to keep the muscles warm and less painful It seems to take months for these muscle micro tears to heal.

My husband has dysautonomia, and he has all the range of emotions also, he takes xanax and it helps. It also helps to just sit with him through those times, let him talk them out, point out, sometimes what is not logical and why. He is so exhausted afterwards, but the fight or flight does not always stop, sometimes it takes days to come down. I wish I had an answer, take care, joyce

I am new so if most post is repetitive bear with me. My husband has a connective tissue disorder and dysautonomia, due to floppy heart tissue. Over the years all drs have tried anti-deps and told him it was all in his head. Be careful with anti-deps,he has tried so many and they have caused him innumerable problems. Doctors are so arrogant, but you have to keep using them, so just keep at it. Do not believe them when they say it is in your head or you have always been nervous. There are medical reasons and it is their obligation to help not hurt and ignoring is neglect which is hurt. I get very angry about this, as you can tell. good luck. joyce