Stretch therapy and hypermobility

[alexc]

I'm trying to find someone to help my partner, but I haven't been able to find much information so far. 

They have hypermobility syndrome, chronic fatigue and potentially POTS. They need to stretch and strengthen, but they need to be really careful not to damage the joints which have hypermobility, which need to be strengthened. They can't stand up for long and they are currently in a wheelchair because of dizziness, weakness and fatigue. 

Can stretch therapy cater to their needs, or do we need to find a good physiotherapist? Do you have any suggestions?

We're located in Canberra.

Thank you.
 

[Kit_L]

Hello Alex, and welcome.

16 hours ago, alexc said:

They have hypermobility syndrome, chronic fatigue and potentially POTS

Three major problems are very different in their causes. My understanding of POTS is that it may be able to be helped by increasing sodium (i.e., for most people, common salt) consumption; here's a brief note: https://myheart.net/pots-syndrome/diet/

Re. chronic fatigue, the Epstein-Barr virus (one of the herpes family) is now thought to be significantly influential, and some people have had great success in eliminating all grains and grain-based foods from their diet for at least two full weeks; the proponents of this approach say that if this is likely to be successful, the person will notice significant changes in the way they feel within this period, which is a great positive incentive.

Re. hypermobility syndrome: the way we recommend beginners to stretch almost always has the joints supported; examples are hamstring stretches done on the floor, and not on a barre, so that the knee cannot be hyperextended; same with stretching the biceps and protecting the elbow. Many people are misdiagnosed with hypermobility syndrome when in fact they are simply flexible; any dancer tested by a practitioner will be "diagnosed" this way, even though their joints are sufficiently strong to handle the range of movement they have. The ST method explicitly strengthens joints at the ends of their ranges of movements by using the 'contract–Relax' approach (isometric contractions done at the end of the ROM). Once desirable ROM is achieved, I would recommend careful strengthening exercise be started, but with a low frequency and duration—anyone with chronic fatigue needs to be very careful in this regard.

We have  a list of teachers all of whom have trained with us over many years on our website; please contact them and discuss this with them.

[alexc]

Thank you for your detailed reply.

We have already been making most of these dietary adjustments, due to preexisting food intolerances and IBS. There might be more to do and I will look into this.

"Many people are misdiagnosed with hypermobility syndrome when in fact they are simply flexible". While I don't doubt this is true for some people, I think this is unlikely for my partner. For example, they are able to touch their thumb to their wrist with ease on both hands, this is not normal flexibility as far as i know. We are still in the process of diagnosis and our doctor thinks it might be Erhlers-Danlos. The symptoms are not limited to flexibility, there is a lot of unexplained pain also. We've been referred to several specialists to find out what is going on. I think we will be seeing a neurologist and a physiotherapist, as well as having genetic testing and an MRI.

I have contacted a local teacher now and we'll see how it goes. It sounds like stretch therapy is a good option.

[Kit_L]

34 minutes ago, alexc said:

our doctor thinks it might be Erhlers-Danlos

That could well be, and there are a few posts here on this syndrome. Good luck and please report back with anything relevant (or interesting/both).