Myalgic Encephalomyelitis Community
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Ref Dr's appointment

Evening all,

I think i'm just looking for a little support, as i'm going to the Dr's tomorrow.....again!!

Although I was diagnosed with CFS in April last year, I was still suffering from chronic dizziness. I have since had a table tilt test, which confirmed POTS (although I am still awaiting the cardiologist appointment to discuss what steps we are going to take to manage it).

However, since looking up POTS I have come across Ehlers-danlos-syndrome. This condition, its symptoms and the impact it has on individuals, sounds exactly like me and what I experience daily.

I have made a Dr's appointment for tomorrow to discuss this with the Dr and have printed of the criteria to take with me to show him why I think this is applicable to me.

The thing is, i'm humiliated to be going back to the Dr's again. I cannot believe how many Dr's appointments, Ologist appointments, clinics, blood test, scans etc I have had in 16 months. I feel absolutely ridiculous taking up so much valuable time....just to try and get a full diagnoses of my symptoms and to find a way forward with my life.

It is the truest saying in the world......If you haven't got your health, you haven't got anything!!!

Sorry to take up people's time, but as you can tell I feel very down about more appointments....does anyone else feel the same?

Thanks kindly for reading my post.


2 Replies

Hi Lisa

Sadly that is the way it is with ME and fibromyalgia, I have both. They are both diagnoses of elimination. And given that they both have a very long list of symptoms that means there are potentially dozens of conditions that have to be eliminated before they can reach that diagnosis.

Don't feel guilty about it. After all it's not your fault the medical profession or science have not got to grips with the condition and figured out what it is, what causes it and therefore how to diagnose it.

Having said that my husband is diabetic and he has far more doctor and hospital appointments than I had even during my year of so of tests for diagnosis, despite the fact he knows what is wrong with him. It's just the way some conditions are.

Hope you get some answers soon.

Margaret :)


I hate to say Lisa that I am 8 years down the line and still visiting doctors. One recent article in the guardian has given me hope however!

Take heart in that you are not alone. Please sign the petition I posted yesterday. If we all fight together with what little strength we have then perhaps things will change.

Good luck Jax 💕


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