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Ehlers-Danlos Support UK
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Hypermobility spectrum disorder and POTS. Has anyone had CBT? Was it helpful?

I'm 39 and recently had a diagnosis after 25 years of symptoms. I'm struggling with now not thinking it's all in my head....I'm giving myself a hard time mainly around pacing activities...thinking people think I'm lazy. I'm considering asking GP to refer me for CBT and wondering if anyone has had good results? Thank you for reading x

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I haven't had it but it is apparently useful:

ehlers-danlos.com/2017-eds-...

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Thankyou for replying, I've had a look very useful ☺️

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I've tried several types of therapy and CBT was by far the most useful. I still incorporate elements of it on a day to day basis.

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Thankyou it sound like you have found it helpful and the benefits continue x

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Please, don't beat yourself up. I was referred to UCLH Neurology department 5 years ago and had the same diagnosis as you. I have alot of strong meds as there are a few other problems. My last visit I let all my fears, hatred etc out and the Consultant was excellent. I've.now got a 4 week stay coming up in the Hughlings Jackson ward at UCLH which will look at the whole picture and work through how I could improve my quality of life. As an aside to this help, I tried Talking Therapies which was good but when that finished I struggled again. I'm now having CBT and it is excellent. I have a great Therapist with whom I've gelled and life is certainly getting easier to manage. I can't recommend CBT enough. I wonder how I would be if I had had CBT in the first place but I didn't understand what it is so opted for Talking Therapies. Go get the help and support that you need and don't be fobbed off. Message me if you want to chat more. Be kind to yourself.

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Thankyou that sounds very positive. My GP is very supportive so I'm sure he will refer me if I ask. You will have to let us know how you 4 week inpatient stay goes x

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Hello Kathy 0063and OTPOTS,

Your posts were really interesting thank you. My teenage daughter has hypermobile EDS as well as a diagnosis of ME. She is always in pain and chronically fatigued.

I am also interested in CBT as a strategy to manage pain and find tools to deal with life and chronic illness. You mentioned UCLH? Can you please advise how you managed to get an in patient stay arranged? I am desperate for a holistic approach for my daughter as her case is so complex but I cannot find anywhere who will take her as a bedridden in patient for EDS or ME? Any help or names to contact hugely appreciated!!

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Hope you get some help with your daughter condition, it sometimes feels like you are banging your head against a brick wall, im sorry to here she is bedridden, have you looks at the links between hEDS and pots/ chronic fatigue and pots. Does she have symptoms when she stands up? Take a look potsuk website is very good. All the best with your journey x

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CBT will help with things that CBT can help with. That is why for some it seems to work. But for others, they are left struggling again afterwards. This could be because there is a physical condition causing the anxiety for instance. Some autonomic dysfunctions are caused by a physical problem, so for those, no talking therapy will work.

digest.bps.org.uk/2019/05/1...

As an example I knew someone who had high blood pressure and high anxiety. She did everything right to lower her blood pressure. She was young, very fit, active, ate well, but nothing would lower it. As time went on her anxiety increased to the point that people were telling her to leave her husband, get therapy and so on.

then one day she saw the old Senior Partner at the surgery, rather than the young female GP that we all liked. He was horrified that no one has tried to lower her blood pressure with drugs and immediately put her on a prescription. And yep, the anxiety melted away.

CBT has its place; if you have faulty thinking that is harming you, then it might work, but if there is an underlying physical problem, it probably won't.

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Thank you for replying, I know this will not cure the POTS but I guess I'm hoping it will help with my struggle with diagnosis. 25 years of being told there is nothing wrong and now them saying actually there is something wrong...I think my brain has not caught up with it all. I am still thinking what if they change their mind and say I don't have POTS. It is hard to discribe the feelings....maybe a little like the greiving process x

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Hi, if you are looking at CBT check your local IAPT service, you may be able to self refer. Ask them for someone who deals with long term conditions. Their methods will be about you accepting the reality you have and changing your thinking about it. I've seen it work wonders! But, you do have to be willing to do the work as well, you will have homework and tasks to do away from the therapy room.

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Thank you for your reply, I will have a look to see if I can self refer, I have also made a dr's appointment for in a few weeks time to discuss it. I have an OT appointment on Wednesday so will see what they say too

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