Nurse who suffers chronic tailbone pain

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I am a Registered Nurse who has suffered with tailbone pain for over 8 years. Like all chronic pain, it is essential that sufferers get the correct support, diagnosis and treatment appropriate for them as an individual. This blog follows my journey with chronic pain, it expresses my personal opinions and thoughts. It is not intended as a replacement for advice or treatment from your normal Healthcare Provider.

Monday, 13 July 2015

Rheumatology letter No.1

So I think I got my wires crossed or something. There was a lot to take in during my consultation. I have just received the letter from the Private Consultant. In it he says;-

 "I think she does have hypermobility syndrome, or Ehlers-Danlos Syndrome- hypermobility type (previously Type 3 Ehlers-Danlos). The nomenclature can be very confusing, as terms /diagnosis are often used interchangeably". "It can be very difficult to differentiate between joint hypermobility syndrome and Ehlers- Danlos Syndrome (hypermobility type)."

This ties in with what Ehlers-Danlos Association told me "Hypermobility Syndrome is generally considered to be the same condition as EDS Hypermobility Type".

He recommends that I have an MRI of my lumbosacral spine and pelvis "to look at areas of abnormality" as well as an echocardiogram. He has referred me back to the NHS for this as he is aware of my financial situation.

I now await the letter from the NHS Consultant, which I know will be different again!

None of this changes how I move forward though. I am trying the Nortriptyline tablets to improve my sleep. Which in turn will hopefully improve my pain, and/or tolerance of it.

I will continue regular exercise and relaxation.

I will continue with pelvic floor exercises.

I will try Cognitive Behavioural Therapy (CBT). This is meant to help me manage chronic pain, and retrain my brain which is currently wired up to receive and act on pain signals inappropriately. This is according to the second Rheumatology Consultant I saw anyway!

I will have the MRI and echocardiogram just to ensure nothing else obvious is being missed.

I know this is the problem when one sees so many 'specialists'. They are obviously going to give different opinions, usually a diagnosis that ties in with their area of expertise.

Ultimately all I have ever wanted and been striving for is to live a pain free existence. Seeing so many people does not make me a hypochondriac, it shows how desperate I am to get some answers and solutions. Anyone who judges me should try living with this pain for a while, then judge me again.



3 comments:

  1. Mummy physiatrist also thinks I am hyper sensitive to pain and too focused on it. He recommended this book - Explain Pain. It is expensive though. My Physical Therapist recommended Why Pelvic Pain Hurts. My Physiatrist doesn't think my tailbone issue will be long term. Well- so far I have not received any treatments that have helped my issue much. Keep us posted.

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  2. Oops.....I meant My Physiatrist.

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  3. Thanks for your comment. I will try and see if I can find these books. Jill.

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