VeganMonkey
Senior Member
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Allyson, I am going to ask my CFS specialist if he can refer me to an EDS specialist. I will see him the 19th. If he can give me the name of a doctor I will let you know
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Certainly laying down is absolutely necessary for me. I am dx EDS. The dysautonomia I experience fits more with POTS than NMH. Many have EDS and some form of dysautonomia. BUT my symptoms do not go away when I am laying down. Even horizontal I find it difficult to think and get exhausted from trying to.
It seems EDS predisposed me to something I call ME. See Byron Hyde's definition of ME and the section EDS. It seems that those with EDS are more susceptible to neurotoxin illness. If I take away everything that can be explained by EDS/POTS I am left with an extreme intolerance of activity...any activity making daily living difficult. I do not have a lot of viral symptoms on a regular basis. WHether I have ME or some neurotoxic illness, remains to be seen. I know I have gotten progessively worse with age which may be explained by EDS or maybe due to something else.
Certainly the people I know who just have EDS do not have the problems with exertion and cognition to the extent that I do, nor do those with purely EDS/POTS. I have met those dx with CFS to find that they do in fact have EDS/POTS though......so for some people that might explain all their symptoms.
d abouand
yet the problem her Sangroper is that so few people have been diagnosed with EDS yet ( as docs are not looking out for it)
yes even when i asked about it i was sent off for heart test no confirmation of dx and the cardiologist make some remark about people in circuses and put me though so many useless test...it took 2 years to recover and start over .......and even now that i have the dx it means nothing to anyone, except it helps my sanity
yes even when i asked about it i was sent off for heart test no confirmation of dx and the cardiologist make some remark about people in circuses .......
Its really great that you are persevering and you are right about people no longer accepting being fobbed off. The problem i have is my level of disablity precludes me from following up many of the things I would like to s i am not able to even write to my dr at present (though i am working on it).Yes it is really awful Sandgroper, sorry for you....and all of us.
I suppose we can only hope that with the speed of research and communication increasing and with advances in things like testing and genetics and epi-genetics some good things may still happen in our lifetimes.
Also there is a groundswell, it seems to me, of medical people who now take these conditions seriously.
I also think if EDS ME are the same thing or parts of the same illness then combining forces and knowledge will help.
There are so many pages out there of people all around the world with EDS ME POT and OI that we must reach a critical mass soon.
(Remember that MS has at least 4 distinct subtypes so we may have that happening here, so the more research the better.)
Also people are now not taking uninformed dismissals from doctors and are instead researching for themselves and persisting until they get accurate diagnosis and help. If I had stopped at the first doctor I saw - ok the tenth... - I would still think I was not gluten intolerant, not lactose intolrant and had no allergies and no IBS - all those things have now been proven by doctors who were top specialists in those fields and knew the right tests and answers to be able to diagnose them. However I might have stopped when I thought I had coeliac if not for ressearch on the internet wheere I found sites like this with others with the same weird symptoms as me and others who hda done reaerch inoto alot of them.
I am afraid with our health we just have to persist until we get justice- I have met a 12 year old boy with spine cancer who was sent home from docs and hospitals with just panadeine for a year beforo he got diagnosed, his mother told me (so it was all in his head too). When i met him he was going in for life-saving surgery - I never heard the result.
Its really great that you are persevering and you are right about people no longer accepting being fobbed off. .....
So yes..if we can get to the root of the problem and get dx early that would help a lot.
I did so many things i thought were healthy for me which were not.
Raising awareness of Arterial Tortuosity Syndrome:
http://www.hopkinsmedicine.org/geneticmedicine/Clinical_Resources/CTD/ATS Overview#Aiden
yes even when i asked about it i was sent off for heart test no confirmation of dx and the cardiologist make some remark about people in circuses and put me though so many useless test...it took 2 years to recover and start over .......and even now that i have the dx it means nothing to anyone, except it helps my sanity
d abou
I think the biggest help for patients with things like EDS is consideration not medication. There isn't much in terms of medication (some blood pressure stuff for POTS I think), having an accurate diagnosis can mean the different between being treated as if you are seriously hurt/injured and being treated as you're whining over nothing, the latter can cause permanent physical harm to both the body and the brain.Do if someone gets diagnosed with EDS what is the next step? Is there medication for it?
I know Phoenix that the thread is long now but there are more tips and ideas for treatment earlier up in the thread.I think the biggest help for patients with things like EDS is consideration not medication. There isn't much in terms of medication (some blood pressure stuff for POTS I think), having an accurate diagnosis can mean the different between being treated as if you are seriously hurt/injured and being treated as you're whining over nothing, the latter can cause permanent physical harm to both the body and the brain.
There is no cure...but for me it helped to understand why i had certain symptoms and use a variety of strategiesPeople in circuses? He meant they are ultra flexible and don't have issues? I was diagnosed as hypermobile more than 15 years ago and I thought it was nonsense (like one of the fashionable illnesses that pop up every now and then) because in my opinion being flexible was healthy and being stiff needed to be changed by exercises. As a dancer flexibility was handy, so again I thought it was a good thing (even though I was ill but I didn't know what my illnesses were back then)
Do if someone gets diagnosed with EDS what is the next step? Is there medication for it?
fortunately i do not have the vascular type..this is the one the drs seem to know about as the first thing they do when you mention it is get your heart checkedYes thanks so sorry for you Sandgroper; it is very tough for all of us. Yes I also pushed a crashed for year s which i don't think was good ...
On another sad note this was posted about a recent death of someone at 42 from EDS.... and it has some info about the disease.
http://www.firstgiving.com/fundraiser/clara-klap/stepsforstevie-1
fortunately i do not have the vascular type..this is the one the drs seem to know about as the first thing they do when you mention it is get your heart checked