On when to stop, and how to be patient

My pain started when I was 10, and has been constant since I was 15.  I saw doctor after doctor and got nowhere.

Some said I’d grow out of it, others seemed to content to tell me it wasn’t arthritis, and send me on my way.

I just wanted to know what it was.  I needed to put a name and I pleaded with them for one, but was told they didn’t want to ‘label’ me.  I was in non-stop, agonising, soul-destroying pain.  I couldn’t go out with friends, I was exhausted and felt completely alone.  I thought knowing the name of my condition would make me feel like there were others out there just like me.  I didn’t see how it was a label – it was the name of my bloody condition, and I wanted to know what it was.

In 2005 I was told by a rheumatologist I’d grow out of it.  In 2008 I got really pissed off, and saw three consultants.  In March it was due to subluxation, in July Chronic Myofacial Pain and by August it was simply ‘mechanically related’.  What the hell did they mean?  They were wishy-washy nothingness!

I was at university one day, and was probably putting off writing an essay, when I put every single one of my symptoms into google and hit search.  A condition called Fibromyalgia popped up.

I read down the list and read everything I could about it.  It fit me!  Everything it said I could relate to.  The relief was – I can only describe it as immense.  I didn’t even register the bit at the bottom that said it was incurable.

I hit print and phoned my doctors, and made an appointment for that day.  It was a doctor I’d never seen before, as I’d fired my previous GP for using the unforgivable phrase.*

I remember the GP finally asking for my symptoms that day.  Do you know how rare that it?  Most get to pain and stop there, as if the hundreds of other crap that goes alone with it means nothing.  He nodded and said yes, it does sound like Fibromyalgia – but you need a clinical diagnosis and so sent me to a Pain Clinic, who still did not give me a diagnosis – but gave me nine facet injections in the facet joints of my neck, and muscles of my shoulder.

It took until January this year – eight years – until I finally ‘hit the jackpot’ by getting some decent doctors and some actual diagnoses.  I saw two specialists on the same day, one who diagnosed me with Fibromyalgia, and the other with Ehlers-Danlos Syndrome (and lots of related conditions).

So, I’ve completed the battle in getting the names, and it did help.  When people ask what’s wrong, I can tell them rather than shrug my shoulders.  I can meet people in the same boat and keep on top of research.

But where do I go from here?  My pain hasn’t improved, and in fact gets worse all the time.  My lower back seems have gone on the warpath to unbearable levels, and my McTimoney Chiropractor, who usually has magical powers in finding the culprit and sorting it out, even temporarily, hasn’t been able to touch the problem.

Credit to Dennis Taufenbach

Credit to Dennis Taufenbach

 

Do I keep battling on?  Do I keep asking to see new professors who I hear have helped others?  Before I got my diagnosis I was going to ask to see an Orthopaedic doctor to try and see if they could do anything with my lower back, but now I have been told I have Ehlers-Danlos Syndrome and Fibromyalgia, are they just going to shrug and say well you have those, what do you expect?  Or might they be able to do proper scans and sort out some of the pain?  I just don’t know.   I feel a bit lost, and am not sure where to turn.

I am on the waiting list for intensive in-patient treatment at the Royal Orthopaedic hospital in Stanmore, for pain management, but it’s still not looking into causes and fixing it.

I guess what kept me going was finding out what’s wrong with me, and now I do, I wonder if this is it?

* The unforgiveable phrase is ‘there isn’t a magic wand that can cure you.’  Did I ask for a magic wand?!  No!  Just a doctor that does their best to help.  That’s all.

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1 Comment

  1. It is a battle to find a diagnosis. I started symptoms in 8/2001 and was diagnosed 3 years later with Fibromyalgia and Chronic Fatigue Syndrome/ME. That at least gave me a direction to go in for treatment. Last year I finally was diagnosed with Hypermobile EDS. It makes sense to me that if my joints are loose and the muscles are constantly over working to hold the joints together that we’d end up with a lot of trouble with muscle spasms. Definitely has helped me to finally know what the root cause is as that impacts how I go about getting treatment. Thanks for sharing your journey. Mine has been one of setbacks until I recently started working with a physical therapist familiar with EDS issues, and working on strengthening my postural support muscles. Finding as they get stronger that they don’t spasm or knot as frequently, very excited about that. Also started a walking program with a heart monitor watch. The key to exercise for me has been staying below 60% of max heart rate (Google for that calculation) and staying very vigilant to the signs that I was doing too much. Very gradually, I have actually built some stamina and have a little more give before overdoing it and crashing. Good luck to you!

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