Orthostatic Intolerance is not really a medical term although it does sound like one. It just means that you get symptoms sitting and standing that are relieved by lying down. Many of the symptoms for orthostatic intolerance are very similar to those with ME/CFS, Fibro and Long Covid so it is easy to both not realise what is causing the symptoms at a given point and for misdiagnosis to happen.
Studies have estimated that between 40% and 60% of people with ME/CFS also suffer from some form of orthostatic intolerance. There are lots of ways that you can test and explore to see whether you might be one of these people.
The most common form of orthostatic intolerance is the PoTS or Postural Tachycardia Syndrome and you can learn more about that by visiting https://www.nhs.uk/conditions/postural-tachycardia-syndrome/ , looking at PoTS UK’s website or by replaying our recent talk by Emily Bland.
Most forms of orthostatic intolerance seem to be treatable whilst there is no known cure at this point. This is excellent news as it means for many people with these issues help could be at hand. Treatments include:-
- diet and life style changes including increased and controlled liquid intake and increase of salt
- specific targeted physiotherapy exercises
- Compression Tights/socks and
- pharmaceutical intervention including beta blockers.
What seems clear though is that orthostatic intolerance is not really consistently being explored by the medical profession in the UK and specifically where it is co-morbid with ME/CFS or fibromyalgia. In our group session on PoTS several members relayed experiences with the NHS consistent with them not handling these issues effectively. Some members have reported being diagnosed with PoTS but not then given any advice or treatment. Others have reported the issues and not being told anything about diagnosis or treatment options.
This is why I really feel that anyone with ME/CFS, fibro or Long Covid really needs to educate themselves about orthostatic intolerance and see whether they are impacted by it and if so what they can do working with a somewhat under trained medical establishment to get the right treatment for themselves.
The good news is that this could mean you could get treatment that could mean you could be experiencing less symptoms than you are now. There could also be less strain on your body giving you the best chance of getting better or doing more.
One of the leading voices in this area is Dr Lucinda Bateman. See for instance this video https://www.youtube.com/watch?v=7M7AjSdgJpE . If there is interest we could approach her or her colleagues to see if they would be interested in doing a short talk / session with us. There is also a great (if long) video with Dr Gupta and Sheffield ME Group here.
In the sphere of Long Covid orthostatic intolerance seems to be the cause of one of the main symptom clusters. Not everyone with Long Covid will have it but it is almost as common as ME/CFS type fatigue symptoms. Whilst everything here more or less applies for Long Covid too I am writing some specific content in this area over the coming weeks.
Ben