I have POTS AND IM NEW JUST WANT TO SAY HI

[Tabatha]

Hi to you all, I have ME, POTS, IBS, fibromyalgia, Ryanaurds. And been told I am hypermobile, I have sort of collected “labels each time I saw a different Doctor, I’ve had problems from the age of 15, it’s a very long story that I won’t tell now, I’m now 51 my ME started after a virus, about 18 years ago, then after seeing different Doctors I got some of the other labels, finally following a hysterectomy I developed the POTS. All along I have felt that something must be underpinning all these problems, I have read about EDS on line, even asked one of my Doctors what he thought, only to be told I didn’t look like somebody with EDS. just recently the question of what underpins my problems has come back to me, so I looked on line, and happened quite by chance across prettyill. I have now managed to find a Doctor who is a specialist in hypermobile syndrome and EDS I have booked a private appointment and will go to see him in June, I am so hopeful that he can, I hope tie everything to together, then maybe I can sort things out. I am looking forward to finding out more from this forum and maybe getting to “know” some of you.

[Barbara]

Hi Tabatha,
Many have been triggered by a virus or a trauma of some sort and also many have struggled for years to get a comprehensive diagnosis, you’re among friends here. When you get time maybe you might want to check-out Dr Diana’s symptoms videos, I think you’ll find some ‘aha’ moments.

(The links don’t work, so you have to cut and paste these into your browser) but look at:-

http://prettyill.com/videos/watch/DrDiana_and_her_symptoms_Ehlers-Danlos_POTS_dysautonomia_hydrocephalus

and

http://prettyill.com/videos/watch/my_symptoms_part_2

Happy viewing,
Barbara
(UK)

[Tabatha]

Hi Barbara
Thank you for your reply, it was coming across one of Dr Diana’s videos by “chance” that I found the courage to seek out a Doctor who could actuarially answer the question that I had about my Hypermobile joints and any connection with EDS and that being the underlying course, I have wondered for some years after reading things on the web. But when I’d asked the Doctors dealing with me, they didn’t know, said I didn’t look like I could have EDS and ignored that part. Trouble is modern medicine only looks at bit of a person ie the heart, or leg or tummy, so when somebody comes along with problems in all areas, they tend to be told its all in the head, or labeled with things like ME, IBS, FIBROMYALGIA, etc. for some reason medics have stopped looking at the whole person and seeing how one area affects another and all the knock on affects, thus they miss the point in an illness like ours. I may be wrong on this point and will not be in the lest offended if others don’t agree. I’m looking forward to getting to know more of you on this board, oh I didn’t say but I an also dyslexic, so sometimes my spell checker can’t catch some of the more strange spelling or a word spelled right but the wrong word used, so pleas forgive me when I get it wron.g

[Henry40]

Gosh, did the medical profession ever really practice holistic care? The last 20 years has seen attempts to bring in holistic practice into the training of doctors but it doesn’t filter though to the workplace sadly. The level of ignorance relating to a lot of chronic illness, but especially ME, CF, Fibromyalgia is shocking, especially in 2013. It is the bad attitude that is thwarting important research ino these conditions and more of an acceptance that these syndromes are complex and may have an organic basis.

[Tabatha]

HI Henry40
I’m not thinking modern medicine! I’m thinking more about the times when the local herbalist was all there was, then they didn’t have a glue about which bit was wrong, so they treated a person, but that is beside the point, the point I was trying to make was that Doctors, on the whole see somebody with more than 2 or 3 “complaints” and simply assume it has to be mental, made up or attention seeking, just because they are so use to looking at bits and not whole people. Im afraid that due to my dyslexia I’m not that good at expressing myself in writing.
Our modern Medication is wonderful, millions are alive because of it, but as you say when it comes to illness like ME, POTS, FM, IBS etc they really don’t have much to offer. Your right it is the bad attitudes of miss understanding, and off course that our type of problem dose not call the attention of big drug firms, who could make lots of money out of a wonder drug, that stops a lot of the research. But saying that thankfully there are Doctors and researchers out there who do believe us and are going full out to help, like Dr Diana, and others. I am very grateful to them, one day our voice will be herd. soon I hope, as you say it is a very complex set of illnesses.

[dab78]

hi could you tell me what ME is. i have been told i have everything you have, i’m not dyslexic
my daughter is though. my dr does not believe in TMJ, fibromyagia, chronic fatigue. he makes me mad sometimes but other times he’s great. i’m so tired i can’t talk or think. thanks for listening.

[Tabatha]

Hi dabs78
It is nice to talk to you, what is ME, I can only answer from my experience, ME stand for Myalgic Encephalomyelitis, hope I spelled that right! It is an acquired illness which means that it is something you “get” rather than something you are born with, for most people it starts with a flu like illness or some other “stress” like an operation, that you never seem to get over, there seems to be a disposition in some people to go on to develop ME why it is not yet known, ME is a neurological illness that has wide systemic affects. Basically it can affect every area, autonomic nervous system, endocrine system, digestive system, cardiovascular system, for some people it is very mild, for other very sever, so they are bed ridden. There seems to be a lot of people who have jiont hypermobility syndrome and EDS also with ME, there is a lot of cross over with FM, POTS,
For more information, I would recommend you visit the ME Association at http://www.meassociation.org.uk and Invest in ME at http://www.investinme.org sorry I don’t know how to do that link thing? if you go to Invest in ME look at the Guidelines page and find both the Canadian Criteria and the New International Consensus Criteria. They are the best as they fully explain the illness.
On a personal level, I developed ME following a Flu stomach bug about 18 hears ago, I just never recovered, was wiped out, I was house bound for the first couple of years fatigue exhaustion, in a lot of pain aching limbs, and joints, awful IBS type problems, headaches, etc. I saw lots of different Doctors, was given different labels, fibromyalgia, Ryanaurds, told I was hypermobile at the time that didn’t really take much notice of the hypermobilety I’d always been that way, I had no idea that it could actuarially be the underling link, I did after about 5 years start to improve, then I needed to have an hysterectomy, after that operation, my ME was exasperated and I started to have fainting fits, this eventually was diagnosed as POTS, I have been badly affected since, I’m mostly house bound, it has been the last few years that I have found out that I could possible link all my health problems to JHS, it would make sense, I have actuarially had problems since teenage years, but it was always put down to being a moody teenager, and before that growing pain, but now I can see that it could all be linked. I’m waiting to see professor Graham in June, he is an expert in hypermobilety and EDS so I am hoping he can tell me what is really going on.
Sorry to have rambled I hope I have been some help

[Barbara]

hi could you tell me what ME is. i have been told i have everything you have, i’m not dyslexic
my daughter is though. my dr does not believe in TMJ, fibromyagia, chronic fatigue. he makes me mad sometimes but other times he’s great. i’m so tired i can’t talk or think. thanks for listening.

Whether your doctor ‘believes in it’, or not, it still exists and it’s his job to identify and fix it, that’s what they get paid for. I don’t know how they get away with it really! Why aren’t they made accountable for their actions (or lack of) or sacked!!

A mechanic has to know the inside and out of a car, in it’s totality, so he can ‘fix’ any problems, so why doesn’t a doctor. The mechanic will listen to the ‘noise’ or whatever and INVESTIGATE it’s cause, not just say ‘I don’t believe in it’ and send you on your way. What would happen if they did, well something else would go wrong, then something else, then the car would grind to a halt – just like us!
Regards
Barbara
(UK)

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