monica

Kris, That's awesome!!!! so very happy for you Keep us posted on how it all goes!

It looks like you might have EDS/other connective tissue disorder. If you are in the Chicago area..definitely go to Dr. Brad Tinkle..he is one of the leading experts for EDS. I just read his book and it is wonderful. I think they are scheduling into May for him right now. So, earlier you make the appointment, the better. As suggested, take a look at ednf.org..there's a great group on Inspire for EDS. You don't have to have a diagnosis to participate there.....

Thanks for the suggestions Dana..I've sent you a private message. Thanks for the reminder Corina, will not elaborate on doctors experiences on the forum If anyone else has any suggestions, please let me know..Thank you!

Thanks Racer! I can't go to Dr.Giuliani ( Insurance issues) and Dr. Susan Baser is not for POTS. I called her office and they said that the Information about her on that website is wrong

Hi everyone, I'm so depressed and urgently need your help. My Insurance changed recently ( not in my control...can't do anything about it ) and my awesome Doctor who diagnosed me with POTS and was treating me doesn't take the new Insurance. I really need to find someone who knows about POTS asap. I can't seem to find anyone.... Can you please suggest someone who treats POTS in the Pittsburgh, PA area. Thanks so much!

I fly a lot, most of the trips are overseas( more than 7 hrs long)..sometimes one after the other with a 3-4 hr stop. I have realised that if I'm well hydrated which means a LOT of water, I do pretty well and don't feel as jet-legged/fatigued later on too. I do have a drink or two so that I can sleep on most of the flight but anymore and I feel awful. I take an empty bottle of water with me to the plane and ask the flight attendant to fill it up with water. They usually willing do it but the last time I flew, the attendant was so mean..he made a face, so I said that I have a medical condition where I need to drink water all the time.... He made a bigger face, so I said that I have Dysautonomia/POTS...to which he sarcastically told another attendant that he had never heard of a medical condition that required you to drink more water..Sigh!

Ephedrine causes Tachycardia...I have POTS and can't take any meds with ephedrine in it. The last time when I took some cold medicine with ephedrine ( this is before I knew I had POTS), I fainted a couple of times. It was scary! I also remember many yrs back I took some OTC diet pills that had Ephedra in it (the FDA eventually banned them ) and it caused severe Tachycardia...it took many hours before my hear rate went back to normal. Needless to say I never took those pills again I don't think you should take Ephedrine if you have POTS. What kind of Dysautonomia do you have?

Rach,I've read about it too. I've had local anesthetic just once long time back and it worked on me, I think. On the other hand, pain-killers of any kind just don't work on me at all. I have tried almost everything and nothing works. I wonder if other people with EDS have the same problem?

Thanks Chaos for the Link to this book..I'm going to get it This is the most updated article I found on EDS-Hypermobility type( though looks like it doesn't mention MCAS?!) http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3512326/ Also, liked this article for managing pain and fatigue in EDS/Hypermobility syndrome: http://onlinelibrary.wiley.com/doi/10.1002/ajmg.a.35483/full

A Lot! Mostly every half hr or so, somedays every 15 min. I also feel very thirsty and drink a lot of water. Sometimes I think that's what I do the whole day...drink water and go the bathroom I have to try this SMARTWATER...looks promising!

Chaos, I couldn't agree more with what you said. Naomi, maybe you can go to another good specialist who specializes in Connective tissue disorders? Fyi, most of my pain and hypermobility is in my neck, shoulders and upper back. My pain started with an injury/tear/subluxation ( I don't know what happened but I felt a distinct crack) in my upper back. Then it spread to my neck and shoulders after sometime and over the years now I get ankle sprains, pain in my hands and fingers. My Geneticist also wants me get testing done to rule out Stickler's syndrome, Fabry's disease and of course Vascular-EDS as the symptoms of all these Connective tissue disorders overlap each other.

Naomi, I never considered myself to be super flexible either..yes, there are a lot of things I can do though which show my hyper-mobility but always thought that others could do it too I score 5-6 out of 9 on the Beighton scale -Both thumbs can touch inner forearm -Pinki fingers extend by more than 90 dgrees. -Both elbows extend past 180 degrees( one more than 10 degrees) --Can touch fingers to floor without bending knees ( I think I could touch palms when younger, now back very stiff?) The Geneticist didn't ask me to show her all this ( she was focussing more on the Beighton criterion ) but I do have additional examples of Hypermobility: -Can easily do the "Reverse-Namaskar" pose. - Can touch both hands behind back by bringing one over shoulder. - Positive Gorlin’s sign-Can touch tip of the tongue to nose. -Hyperflexion of big toes on feet - Swan neck deformities of fingers ( hypermobility DIP and PIP joints most fingers as well as IP joints of thumbs) I also have : -Positive Walker-Murdoch sign -Positive Steinberg-thumb sign though these are more to test for Marfan's than EDS. I also have thin skin with visible veins, easy bruising, flat feet and get ankle sprains frequently.

Hi Tigerbomb, I agree that much more has been written about HEDS and Dyautonomia, maybe because CEDS is less common… I have been wondering about that myself. I suspect my brother also has EDS though his symptoms are not as bad as my mom’s or mine but he complains of pain, insomnia , anxiety and has sever GI issues. My mom’s brother who is super hyper-mobile, is in his 50’s and is completely pain-free…go figure! Mytwogirlsrox, Christyd, my reasons for pursuing a diagnosis of EDS were exactly as Issie and Tigerbomb described. I needed to know what was causing my pain all these years. My mom is also in a very bad shape, I really needed to get help for her too. She has horrendous, painful varicose veins, cranio-cervical instability, carotid-cavernous fistulas ( bleeding in whites of eyes), trigeminal neuralgia, multiple-awful allergies among other things. I want to protect my joints and prevent further damage and do all I can to slow the progression of EDS. I too was sick of being told it's Fibromyalgia/stress/anxiety/all in my head...I needed validation because deep inside I knew that something was very wrong......

Thanks Issie! Hi Badhbt! Along with hyper-mobile joints, the Classical type has more skin involvement than the hyperrmobility type ( though the hypermobility type can also show skin manifestations since there is usually a crossover between the different types). Hypermobility type : http://www.ncbi.nlm.nih.gov/books/NBK1279/ Classic type: http://www.ncbi.nlm.nih.gov/books/NBK1244/ Only a Geneticist/Rheumatologist who has knowledge of EDS can differentiate between the different types. The Geneticist said that I have wide scars and very soft, doughy skin which I didn't know. I also bruise/get cuts easily and have prolonged bleeding. I don't know if she thought my skin was stretchy or not... I'm curious to see her notes when they send them to me.

Oh! So looks like a lot of us get this. Yes! Brain-zaps would be the right word for it. This is interesting because I got checked for Celiac disease and don't have it but I was reading that you can test negative for Celiac but still be gluten-intolerant?!