Monday, 28 July 2014


For years I suffered under the diagnosis of ME.  I was 15 years old when I was diagnosed, there were no treatments and I was expected to get better.  I didn't get better.

Over the years I suffered flare ups of pain an ill health.  I saw many doctors who were unable to help me.  No-one knew what ME was or how to treat it.  I'd tried low dose antidepressants but they just made my symptoms worse.  I saw psychologist but I had no depression or behavioural problems that would explain my symptoms.  There was nothing I could do but I didn't give up

After years of research I discovered my symptoms fitted Joint Hypermobility Syndrome, Ehlers Danlos Syndrome and POTS and after more years ofbatting with doctors who were reulctant to consider anything other than my ME diagnosis I finally got diagnosed with JHS, EDS and POTS.

Finally I had the right diagnosis I had hope that there would be treatments to help me.  I was wrong. Suddenly I had become untouchable.  My conditions were so rare that I knew more about them than the doctors I was consulting, they were not aware of some of the most basic symptoms and complications so they backed away like I had something horribly contagious.

I saw a local physio who barely even examined me.  She told me to stretch and do basic fitness exercises.  She encouraged me to do Tai Chi, which wasn't the best advice to give someone with POTS considering I can't stand unaided, I collapse when I do stand and raising my arms above my head makes the symptoms ten times worse!  I was discharged because there was nothing they could do for me.  Nada.  Zilch.

I was told to try Pilates and paid for private lessons but they caused me more pain and I was able to do less as a result of the increase in symptoms.  One worrying symptom was the severe pain in my head and neck that is brought on by any kind of movement or stress.

I saw a neurologist to rule out Chiari malformation as it may have explained some of my symptoms and it is more common in people with EDS. The doctor was doubtful that I had it and explained even if I had they wouldn't do anything about it as the surgery to treat it could make me worse.  I was given a laying down MRI to rule it out (even though an upright MRI is required to fully discount it) and was told everything was normal.  I was discharged, no closer to finding out what was causing my pain.  I did learn that I have myotonia in my hands.  If I grip something very hard for more than a few seconds I can't relax my fingers.  The neurologist said it was a rare complication of EDS but gave no other information or advice on how to treat it.

I've had the pain in my head and neck for 14 months now.  It affects me every single day and the only thing that helps is diazepam, which is not an ideal long term solution to the problem.  The pain gets worse when I move my head, raise my arms to lift a plate from the cupboard, turn to look over my shoulder when crossing the road, even sleeping can trigger it.  I went back to my GP and she wondered if it could be occipital neuralgia. She sent me to a pain clinic with a view to having injections to ease the pain.

I waited a month for the clinic appointment but unfortunately it was another disappointment.  I was discharged in less than 30 minutes.  Apparently my pain is not consistent with neuralgia and the treatments are not suitable for me.  I was offered injections of steroids and a local anaesthetic - my old friend lidocaine.  I had to explain to the doctor that lidocaine doesn't work in EDS patients.  The doctor had never heard about it before so I showed him my Stickman Communications card  He said he wouldn't inject me, especially considering the reaction I had to lidocaine when the ignorant ENT sprayed it up my nose.

The other option was acupunture.  I've had it before and it can be quite relaxing so I said yes and asked if he had any gold needles.  I have a nickel allergy and the last time I had acupuncture I broke out in itchy red dots where the needles had been.  He said no, he only had the stainless steel needles which contained nickel.  There was nothing else he could do for me so I was discharged.  The doctor was apologetic but seemed pleased to see the back of me.  I have become too difficult.  Untouchable.

I have the right diagnosis but I can't find anyone who even wants to help me, never mind is actually capable and knowledgable enough to help me.  I've exhausted NHS options so that leaves me with having to do my own research and pay for my own private treatments.

C'est la vie!

1 comment:

  1. Hi I've been reading through your posts. Have a look at thoracic outlet syndrome as an alternative dx. I have eds and tos and your description sounds very familiar