• Welcome to Phoenix Rising!

    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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

Hypermobility syndromes, including EDS - the overlap with ME/CFS

charles shepherd

Senior Member
Messages
2,239
Hypermobility syndromes and the overlap with ME/CFS

A very good article in the on-line Daily Mail today about a GP who has been diagnosed with a hypermobility syndrome called Ehlers Danlos Syndrome:
http://www.dailymail.co.uk/health/a...s-bloating-fatigue-body-stretching-shape.html

Hypermobility syndromes, including EDS, are more common in ME/CFS and often remain undiagnosed, even when there is no overlap with ME/CFS

Quick notes on the overlap between ME/CFS and hypermobile joints:

1 There is quite a lot of good quality research evidence (which doctors are generally unaware of) from both the UK and the USA to indicate that hypermobile joint syndromes, including Ehlers Danlos Syndrome, occur more frequently in people with ME/CFS

2 Research references:
http://www.sciencedaily.com/releases/2002/09/020906065021.htm
http://www.ncbi.nlm.nih.gov/pubmed/16396727

3 Diagnosis and proper management of hypermobile joints is very important - especially from a physiotherapist who is experienced in dealing with hypermobile joint syndromes. There are NHS and private hospital based referral centres where expert advice can be obtained if necessary
In London: http://www.thehypermobilityunit.org.uk

4 Hypermobile joints can be associated with other non joint symptoms and signs that result from problems with the connective tissue - including orthostatic intolerance, delayed wound healing and varicose veins
Reference: http://www.ncbi.nlm.nih.gov/pubmed/10518084

5 With regard to examination, here is some information that is going to be inserted into the next (2016) edition of the MEA purple booklet:

Joint hypermobility Some people with ME/CFS also have a genetic disorder of connective tissue known as Ehlers Danlos syndrome (EDS). This can cause stretchy and/or fragile skin, lose hypermobile joints that may dislocate, delayed wound healing, and a tendency to develop early onset of varicose veins. Those with ME/CFS and orthostatic intolerance have a higher incidence of EDS (Rowe et al 1999). Professor Peter Rowe, a leading expert in joint hypermobility and ME/CFS from John Hopkins Hospital, USA, has also observed that those with joint hypermobility have postural abnormalities that are thought to be a consequence of the effect of gravitational loading of the spine, including a head-forward posture, a rounded appearance of the thoracic spine, and increased lumbar curvature. Rowe et al have reported that a reduced range of motion of the limbs and spine was significantly more common in adolescents and young adults with ME/CFS than in carefully matched controls (Rowe et al 2014).


6 EDS patient support group: http://www.ehlers-danlos.org


Dr Charles Shepherd,
Hon Medical Adviser MEA
 

adreno

PR activist
Messages
4,841
3 Diagnosis and proper management of hypermobile joints is very important - especially from a physiotherapist who is experienced in dealing with hypermobile joint syndromes. There are NHS and private hospital based referral centres where expert advice can be obtained if necessary
In London: http://www.thehypermobilityunit.org.uk
Strength training is often recommended for EDS. However, it's impossible for us.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
I was recently dx with JHS or EDS as my rheumatologist said they were the same thing. I was then promptly discharged with no follow up at all. 3 of my children show signs od EDS also.

I alaso have Lyme and MCAS - MCAS seems to be much more common in people with M.E and Lyme who also have EDS - the triple whammy!
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
With regard to examination, here is some information that is going to be inserted into the next (2016) edition of the MEA purple booklet:

Joint hypermobility Some people with ME/CFS also have a genetic disorder of connective tissue known as Ehlers Danlos syndrome (EDS). This can cause stretchy and/or fragile skin, lose hypermobile joints that may dislocate, delayed wound healing, and a tendency to develop early onset of varicose veins.
Apparent misspelling that needs correcting before insertion:

'lose hypermobile joints' should presumably be 'loose hypermobile joints', and would IMO be improved by a comma after 'loose'.

No charge for the proofreading. :D
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
I don't have EDS, but have a long history of connective issues: low back flares, Dupuytrens Contractures, frozen shoulders. In fact, I did have loose shoulder and knee joints, which resolved when I removed sulfur from diet.
 

Sushi

Moderation Resource Albuquerque
Messages
19,934
Location
Albuquerque
Strength training is often recommended for EDS. However, it's impossible for us.
I've got EDS and it has caused a lot of problems over the years. I have found a way to do core strength training but I realize that many won't be able to do this. I can do pilates, lying down, with pilates machines which take some of the training burden. I wear an HR monitor and stop if it gets too aerobic. I also take a beta blocker before class to minimize HR spikes. This is a compromise but it does allow me to strengthen core muscles without getting pay back and greatly reduces day to day pain from EDS.
 
Messages
14
I have EDS too and have had it since I was born. My joins dislocate often, my skin is really fragile and stretchy, my joints are extremely bendy, my knees are not straight and when I visited the physio about correcting it all and doing exercises to help, again like someone said, it's strength and building up muscle to support the joints, which is a huge struggle for us. I found using a low grade exercise bike in very small amounts helpful, but lately over the past few months I haven't been able to do any exercises and I've got joint paints again. It's not nice for those of us to have both.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Espero que mejora mi español
OK - bluff called - I only have very basic Spanish, but noticed 'gracies' instead of 'gracias'. I'm not actually sure what your sentence means, but am guessing it's "I hope that my Spanish is improving/will improve" or something like that!

Is this slightly off-topic, I wonder...? :lol: