POTS and EDS

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Janmars1
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by Janmars1 on Sat Aug 03, 2013 10:14 am

POTS and EDS

It seems that lots of people diagnosed with ME/CFS have POTS and EDS. My daughter has recently been diagnosed with POTS although our GP was quite dismissive and had never heard of it. I think she needs a referral to be assessed for EDS but the GPs attitude is putting me off.

When will GPs and other medical staff receive an education in this area?

Is EDS and ME mutually exclusive? ie. Is it possible that she has received a diagnosis of CFS (not ME in this country!) and has then been continually dismissed by everyone when they see the CFS diagnosis, when in fact she has EDS and needs an assessment and good advice on how to manage her symptoms.

The situation surrounding CFS is very confusing for the general public and any medical staff we have seen concerning it are very wary. Is this because they know GET and CBT won't help but they have nothing else to offer as the NICE guidelines could do with updating?

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Dr Caroline Grayson
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by Dr Caroline Grayson on Wed Aug 14, 2013 11:47 pm

Re: POTS and EDS

I think this is a really interesting area as I am certainly aware that a number of my patients appear to have significant hypermobility and CFS/ME. I also certainly have at least 1 patient who has hypermobility/CFS/ME and POTS so the diagnoses are certainly not mutually exclusive. From my experience the children and young people with hypermobility and CFSME do appear to have more difficulty with pain management although I personally haven't seen any specific research in this area. I have involved my paediatric rheumatology colleagues for support/advice for those with significant hypermobility/EDS
Caroline Grayson
Dr Caroline Grayson
Consultant Paediatrician

cags2015
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by cags2015 on Thu Aug 15, 2013 6:42 pm

Re: POTS and EDS

Dr Grayson, perhaps you could clear up a source of great of frustration for me. My daughter (aged 15), has a diagnosis of ME/CFS, which was confirmed at the ME/CFS clinic she attends and she has also had a subsequent diagnosis of POTS after a tilt-table test. The assessment of ME/CFS at the ME clinic involved the completion of about 5 different questionnaires, mainly psychological and standard blood tests done through our GP. She was at no time examined in any way, not even to have BP taken and no tests were done or ordered!! POTS was never considered although she had the classic signs. I had to push really hard to get the POTS consultation as my daughter's Paediatrician and our GP didn't seem to know much about it.

My confusion is whether my daughter has ME/CFS and POTS or whether she just has POTS, as the symptoms overlap to a large extent. She has the classic Post Exertional Malaise associated with ME/CFS but also has classic autonomic symptoms associated with POTS. Apparently fatigue and intolerance to exercise can occur with both illnesses. What do doctors look for when diagnosing ME/CFS and is POTS even considered? If POTS is also diagnosed, is it as well as ME/CFS or as an alternative diagnosis?

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Dr Caroline Grayson
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by Dr Caroline Grayson on Thu Aug 15, 2013 10:55 pm

Re: POTS and EDS

Hi
This is an interesting area as you mention as there is an overlap with symptoms and it is an area which is being researched and I know Prof Newton in Newcastle is interested in this in adults.
For young people whom I see who meet the criteria for a CFS/ME diagnosis I routinely check lying and standing BP and lying and standing heart rate. I have then tended to make a diagnosis of CFS/ME and POTS if they meet both criteria as CFS/ME can lead to autonomic dysregulation rather than POTS being a primary diagnosis but other people may have different views.
Caroline Grayson
Dr Caroline Grayson
Consultant Paediatrician

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