Gastroparesis is one of the symptoms of Ehlers Danlos Syndrome. I have EDS with Hypermobility. One of the main sites about EDS is www.ednf.org Fibro often occurs with EDS. Yes I know I beat the subject of EDS to death but I want people to be aware of it because it lacks awareness, and because some may suffer with it without knowing. I was just diagnlosed.
Susan W
Waterwaves,
You're not beating the subject to death, you're educating people. And since many new people come on every day, you're catching a new audience every day. And I think you're doing a great job of it, so carry on!
Thank you,Petunia. I feel like I'm always going on and on about EDS but if I had known sooner I could have prevented damage to my body and I want to help others. I think it is so under diagnosed but it doesn't help that the medical community isn't very educated about it in general. When I see people mention symptoms that I've seen listed on many EDS sites and forums, I just want to say please please look at this possibility. but I worry about sounding like a broken record. Thank you so much for your post. I appreciate your support and encouragement greatly.
big big hugs
Water aka Susan W
Waterwaves,
Thanks so much for providing the info on EDS. I had never heard of it before and will talk to the dr about it tomorrow. Really appreciate you speaking up and making folks aware!!
Sunflower
Ok I am not any better yet. This is getting bad. I am back in the er cause I am very weak. I called the dr and he said to go in because of dehydration. I am so sick of drs and the hospital. I just want to feel already. I will try to give an update after I am done.
So sorry to read you are back at the hospital. Hope you get a competent doctor. Hang in there!!
Sunflower
You;re wekcome Sunflower. If you would like an invite to the sub group for fibro and hypermobility (double jointed but you don't have to be to join it) I can send an invite or give the link here. I need to go post it to my fb too.
Thanks and hugs
Susan W
Yes, exactly!
Are you any better than you were earlier in the year, Sunny? Hope you don't have EDS, it sounds like an insidious illness.
When I was working on getting my disability, the man I used told me about another person he was working with and asked if I mine meeting her or just emailing her since she was so isolated.
She has the disease you mention.. she cannot rely on her limbs digits to work every day.For example some days even holding pencil is impossible since her fingers bend backwards so she cannot grip it. True with walking and using her arms. It really is very strange disease to see since she her joints literally pop out and must be put back in...something her parents learned how to do...but as you all might have seen on medical tv shows popping shoulder joint back in is not for timid. She says other than those times she is not in much pain. She does get tired easily like most of us with issues with our bodies.
I had not ever heard of it...sad point is...only thing maybe she could do for job is something with her voice...such as voice overs or reading for audio books...but since her disease never allows her to use her joints normally completely she gets exhausted. She kind looks like albino since her skin has strange color to it. But she said for most part the pain is not bad except if larger joints pop out or bend backwards.
She applied for disability and was denied...she has not ever worked since what can she do? So my guy came to her rescue and started doing the work. Best thing about him on her case...was he asked them to give just a few jobs that realistically she could do...since they denied her. He would not let it go...going up later to main boss..who finally admitted that there was nothing she could do and wrong of them to turn her down. He said this why he quit working for them just due to cases like this where they deny it and it is bs.
I can say this..that her attitude about being this way since she has only known it as that way is great. She can walk but must do a lot of pt for days she cannot to keep muscles toned..same with her arms.So she spends a lot doing physical therapy...and it comes and goes how bad it is...but just matter of months till she cannot walk again, maybe just for day..and when she can she uses canes just in case.
i can honestly say she was inspiration to me and still is. I was glad that we made friends and because i accepted her plus with some counseling, she has now made friends her own age and trying to be as 'normal' as one can with this strange disease.
He did get her disability and at decent income..since they had nothing to measure it by since she had not ever been able to work. She has lot of hope that in her lifetime there will be drugs to make her life better.
Really...she is amazing but her parents really love her greatly with out spoiling her..they do make her try and have since get go. I think school was hard since she looks different and than is different. We all know how people can be mean to those who do not look 'normal'.
Anyways...i hope this might provide other person about what it is like...there are different kinds as site says so do not think this is how it only is.
But just to add..i have had abdominal cramping with severe diarrhea about all my life. I pass out a lot of time due to severe cramping plus often i am both vomiting and have diarrhea so i end up just putting down news paper on floor and just deal with it as best i can...laying down if feel i am going to faint.
My favorite doc of all time...internist who was great..got that unlike what other doctors and specialist asked of me to get to hospital while i am like that so doctor could first hand see symptoms. I mean, i cannot stand up with out fainting plus i must need a bathroom...I have gone in once it is kind of stable but they said they still do not know.
Any ways my Internist Doc said just keep hydrated...sipping Gatorade or children's pedialyte or if you belong to kaiser their handbook had recipe to make your own Gatorade. Just you need to keep electrolytes up normal or than all can sink quickly. She also said take Imodium or drug to stop diarrhea..where i had thought it was best to get it all out of you..she said no you get to dehydrated. They never did find out what it was for sure...specialist were arguing about it.
A good friend who's daughter has Crohns...thinks that is what it might be since i describe pretty much exactly what happens to her daughter plus, certain foods can set it off or well water..that might be slightly contaminated and for healthy person you be find but since my white count is low due Sle.it makes me sick.
I can say this...that there are tons of diseases it could be after all tests they put me through. Since it has been over 15 years since last going through complete work up to try and figure it out....i might try again here since so many things have been discovered.
I am really sorry, that you are suffering this...for me, cramping pain like that just knocks me out hard. Just is kind of pain i have hard time dealing with...if that makes sense..some pain is easier to handle than others.
Be careful because otc and prescribed pills often can cause these kind of symptoms too. I really hope you are better and that your doctor gets to the bottom of what caused yours problems.
Thank you for telling us about your friend, Siskya. EDS is such a varied disease in the different types of it. People can have such a different variety and degree of symptoms. My joints aren't as bad as your friends as far as hypermobility goes but I have a great deal of pain with mine. I was diagnosed with fribro long before I was diagnosed with EDS. I have the trigger point pain and early osteoarthrtis that causes pain in a lot of my joints. Plus my skin hurts a lot too. I hope your friend is doing ok now and I'm glad you know someone who is good at fighting for diisability for people like us and glad he was able to get them to give it to her. I have a problem with dehydration too sometimes. I was going to write more but need to lie down now. Thank you so much and hugs
Susan W
well going to the er did pay off a little. i was given fluids and pain meds which r working well. i do feel better now that i am not dehydrated. the only thing is i am no closer to finding out what wrong. of course since i have not been eating i didnt have a bowel movement while i was there so there is no way they could run test. my blood work came back fine so i was sent home and told to call the gi dr back in hte morning. i just saw him monday i am not sure he will be of much help. but i will call.
on a seprete note as i was pulling in to my neighborhood i almost hit a cat. i stopped and got out and the cat came right to me. i was shocked. i took it to my car to warm up its only 20 degrees out. my mom let me bring the cat in and i feed it tuna and gave it water. it was very hungery and thursty. i feel horriable cause i know it has to be a pet it is so sweet. even though i can get in trouble i am going to take the cat to my room tonight. fingers crossed it doent pee all over. and tomorrow i will take it to a no kill shelter.
back to my health i feel like asking the dr to do a direct admit. something is wrong and its not getting better. i am so happy i could be pain free for awhile its a much need break from the pain. sitting at home in pain is not helping me maybe if i was admitted they could find out whats wrong. if this continues much longer i will be forced to go back to the er to get rehydrated agian. i hate going there again and again but i was so weak today i needed help.
well me and the kitty are going to get some rest.
Hi Steph,
So glad you got some relief. I wonder if you could get all the test results from the hospital, ER, and the GI doc and then find an internal med doctor to see you. They are just primary care docs but have more experience in complex medical patients than a family doctor.
Have a great nap
Maria
thanks i will have to try to find one. that is a great idea thank you.
well so far i still have the cat i found. i have to see if my stepdad will let me keep it. i found out its male and is a mancoon cat. he is so beautiful and so very loving. i have wanted a cat for so long and now i might just be able to have one. my mom seems to like the cat so i have one parent on my side.
i do feel better now that i got fluids i am hoping that this will pass soon cause after i lose all my fluids again i will be stuck back in the er.
I think a pet would be great for you, esp a cat as they are low maintanence.
Well saw the stupid doctor yesterday he wanted to take me off the tramadol i would of killed killed kim.All he can say is you will always be in pain dah but doesnt want to do anything about it doesnt want to put me disability dont know what to do.cant get to boston with no car im about just to give up.i cant takr the pain much more.
i am so sorry to hear that. is there some other pain dr u could go too?? i feel like drs think that just because we have a cronic pain condition we shouldn't be allowed to have pain meds. i get so mad at drs. yes we live with pain day in and day out but we deserve some pain relief. we need stronger pain meds for flares. i wish that everyone who doesnt have fibro should have to live with it for a month and in that month would be a flare up. that way ppeople and drs wouldn't think the way they do. i really think it has to take feeling our pain to understand it.
i will be praying that u can find a dr who will help you get the pain relief u need.
after being home now and dealing with all this pain from the ulers i was forced to go get the perscription that cost $110 to help with the ulcer pain. i was trying to get by with out it but i cant and the gi dr said there is nothing else like it. it better help a lot for the cost.
the pain is really getting to me. i was given a cough med that is supposed to be like liquid vicoden. i took that hoping it may help. so far no luck.
i was off work all this week due to the stomach flu. i did meet my boss to get paid and was told that the one grandma is supposed to watch the baby next week. the dad said he doesnt think she will last all week. i am hoping that she isnt doing this to see if she can handel it so that they can fire me. i felt bad having to call off right after just starting but i cant watch an infant with the stomach flu. i was also scared that i may give it to her. i guess that i will just have to wait and see if i still have a job.
Hi Steph,
I was just wondering how you were feeling and what was up with the cat. I hope your stomach is better. Talk soon.
Maria
so far no one has claimed this wonderful cat. he has become my best friend very quick. he is never very far from me. he likes to lay on the ledge that over looks our living room. at times he follows me.
i am doing so so. i am still in constant pain but its not quite as bad as it was but bad enough to make me feel crappy. i was in pjs all day only to shower and put clean ones on. i am hoping that in a couple days things will be better.
well the medicine seems to helping just a little. i am hoping in a couple days i will be ok and not in all this pain. the pain is a tiny bit better but not much. other than to pick up my meds i havent been out of the house this weekend and i dont plan to except to go to church.
i am still having problems tring to wear anything other than pjs and sweat pants. i hope this feeling goes away soon. i remember from my last surgey it took awhile to feel ok in normal clothes. due to my beliefs i do not wear pants except in my house. i wear skirts mostly jean skitrs cause they go with about anything. i have streachy leggings to go under them in the winter months and in the summer i have knee length skirts.
well no one has claimed my kitty. he is the best thing to have right now. he never strays far from me. this may sound bad but i hope no one claims him. i have checked agin online to see if there is an add in the paper of if someone has posted a pic of him on the online pet sites that post lost pets. i have noticed a big change for the good in my depression since i have rescued this cat. i have named him only cause i have to call him something other than kitty. so his name is Symba like from lion king. the fur around Symbas head kinda makes him look like a lion so the name is a great fit.