Looking after number one

From past experience physiotherapists are not my best friend. Their well meaning advice has unfortunately lead to more pain and suffering rather than better health and recovery, so I'm always a little nervous when I get referred to see someone new.

Today I met a wonderful physio, who for the first time in my life recognised what could be causing my pain. My muscles don't relax after being contracted. They stay tight long after the exercise or movement has been completed, despite me being in a physical and mental state of relaxation. This explains a lot!

My EDS consultant, Dr Cohen, thought it may be beneficial to have trigger point therapy on my neck as I suffer with very painful muscle spasms. The physio I saw today found a trigger point and tried to release it but she noticed that my muscle remained tight, and it was still tight several minutes later.
At this point I explained the problem I'd been having with my hands. A couple of years ago when I was investigated for Chiari malformation (which thankfully I don't have!) I showed the neurologist how if I grip something tightly my hand doesn't let go. She didn't know what it was but later wrote to my GP saying it was myotonia, which was a rare complication of EDS. I later discovered that it is not a complication of EDS and I asked for a referral to see Professor Mike Hanna at NHNN in London at his Muscle Channelopathy clinic. I have an appointment there next month.

Because my muscles do not relax properly the physio thought that trigger pointing may not be so beneficial so she showed me an isometric exercise for my knees to maintain the strength. It was a simple exercise that I had no trouble completing but after doing it the physio noticed that my muscle was still contracted. I was laying on my bed, comfortable, warm and safe, physically and mentally relaxed but my right thigh was tense. The penny dropped. This is why I feel muscle pain around my joints. The muscles aren't behaving as they should and that's probably why I'm ending up with trigger points which cause even more pain.

We had a great discussion about what I can do to help myself. I've always found heat beneficial so the physio recommended using hot baths and my wheat bag for relief. We also discussed the possibility of muscle relaxants. I have a prescription for diazepam for my neck spasms but it's only for occasional use as tolerance is an issue with diazepam.

I always get confused about the conflicting advice I've been given but the physio told me I need to put the past behind me and start looking after myself. I need to be more aware of my posture and avoid hyperextending and subluxing my joints. I also need to be aware of how activities affect my pain levels and not push myself to the point of pain. I'm not doing myself any favours my running myself into the ground.

I asked the physio what could cause my muscles not to relax properly and she said it could be fibromyalgia. I told her about my argument with a rheumatologist who dismissed all my complaints as fibro and told me to take gabapentin and do more exercise. She said that gabapentin and pregabalin won't help me because I don't have nerve pain and that exercise doesn't help most people with fibro.
I now understand a little bit more about the cause of my pain it's all starting to make sense. For many years I have described my pain as feeling like every muscle in my body is tense, even though I am relaxed. It's taken over 20 years for someone to pick up on it and I'm very glad they have. I understand now why the rehab course at Stanmore make me sicker, not better. The physio said that stretching would not help me, you can't stretch tight muscles, it would only stretch the already weak and over stretched ligaments and would provide no benefit at all. My goal now is to listen to my body and not push it to the point of pain because I that will only lead to more trigger points and more disability.


So now I have a good excuse for taking a nice relaxing bath - on doctors orders! :)

My story

My name is Clair and I'm a zebra.

I've been chronically ill since my early teens.  I was a relatively healthy child, I did well at school and enjoyed doing dance classes but when I hit puberty things started to change.

When I was 13 my mum took me to the doctors because I felt unwell.  I was exhausted and achy but didn't have any specific symptoms.  They tested me for Glandular Fever (mononucleosis) but the results were negative.  The GP put it down to puberty taking the 'spunk' out of me.

I never really got better.  At 14 I had a severe chest and sinus infection that caused a high fever, severe head and neck pain and hallucinations.  A few weeks later I told my mum I couldn't go to school because I had the flu and my knees hurt.  It was July and I hadn't suffered any falls or injuries.

I had recurrent tonsilitis when I was 15, I had achillies tendonitis twice and I became very run down with boils in my arm pits and bottom.  I felt ill all the time, I fell asleep as soon as I got home from school and it was obvious something wasn't right so my mum took me to the doctors.

I was diagnosed with Post Viral Debility and told that sometimes it takes people longer than usual to recover from viral infections, but I didn't get any better.  I went to see a neurologist who said I probably had ME.  That diagnosis stuck with me for 23 years.  No-one ever dared challenge it and as there was no treatment for it I was left to manage my symptoms on my own.

Through the years I got progressively worse.  I suffered with joint pain in my ankles, knees, hips, wrists, elbows and shoulders but the doctors could find nothing wrong.  My blood tests were all 'normal' and my x-rays were clear.  I became physically disabled, the pain in my knees and hips made it difficult to walk and I had to start using a wheelchair outdoors.  I was unable to complete my education and I was never well enough to look for work.

I suffered at the hands of doctors who didn't understand.  They thought my symptoms were all in my head but I had no psychological problems.  They thought it was due to inactivity but every time I increased my activity my symptoms would get worse.  I had severe flare ups that left me bed bound, I got so ill I was admitted to hospital as I could not stand or care for myself.  I struggled with normal activities but had to fight to get support from social services.

I felt like a medical hot potato.  No-one wanted to see me, never mind treat me.  My GP told me to give up looking for answers.  Then by accident I found out what was wrong with me.  My children all suffer from growing pains, as I did as a child.  I Googled to see if there was anything I could to help them and I came across the diagnostic criteria for Joint Hypermobility Syndrome.  It was like a lightbulb moment.  This is what was wrong with me!

I went to my GP armed with fact sheets to ask if I had JHS.  She told me she didn't know anything about it and to ask my rheumatologist.

My rheumatologist told me I had Fibromyalgia.  He gave me a leaflet which described people with hypersensitivty to pain, insomnia and depression - the exact opposite of me!  I questioned the diagnosis.  I'd already tried the treatments (tricyclic antidepressants, exercise and Gabapentin) and they made me worse.  the rheumatologist insisted I had Fibromyalgia.

I asked him about JHS again.  He examined me, told me I wasn't hypermobile but he was amazed that I could put my hands flat on the floor, especially considering I'd just got off my mobility scooter and hobbled across the room with my walking stick.  He wouldn't give me a straight answer and referred me to a physio.  She didn't think I had a connective tissue disorder and just gave me an exercise to strengthen my elbow, so I came to a dead end.

I don't give up easily.  I thought Joint Hypermobility Syndrome was a real possibility so I read everything I could about it and I made a private appointment with Dr Hakim at St John and St Elizabeth's Hospital.  Dr Hakim was brilliant.  He listened to my concerns, he explained things in a way I could understand.  He examined me, gave me a diagnosis of Joint Hypermobility Syndrome and best of all, he wrote up a treatment plan.

I finally found my identity.  I was a zebra.  A medical rarity.  Doctors are taught "When you hear hoofbeats, think of horses not zebras" but that doesn't mean zebras don't exist.  The more I read the more I began to realise that zebras aren't as rare as the medical profession think.  There are many other people like me who are misdiagnosed with other conditions such as ME, Chronic Fatigue Syndrome, Fibromyalgia and psychological disorders.  

In this blog I hope to share my thoughts and experiences.  I'm not qualified medical professional and I can't give medical advice but hopefully I can provide some food for thought.