Thursday, 27 September 2012

It's All Going Swimmingly

The primary treatment for HMS is physiotherapy and strengthening exercises. I was very excited to at last have a diagnosis and looking forward to starting treatment. My first physio appointment was encouraging, the physio asked for a lot of information on my joint problems, and asked detailed questions such as "Which fingers go numb when your shoulders are bad?". She told me that I would choose my three worst joints and we would begin by doing exercises focussed on supporting those areas. I selected feet, shoulders and hips. She gave me some foot exercises to help my plantar fasciitis and said at my next appointment we would look at the other joints. I went away feeling buoyant and hopeful.

At my second appointment, the physio manipulated my shoulders and hips. She said she could not detect any problems in the joints except for them being hypermobile. She said that all my pain must be muscualr and due to me being "very unfit". I was concerned by that, as by my estimation I was not "very unfit", I may not have been able to do much formal exercise in recent moths, but I lead an active life and have been exercising regularly as much as I have been able, all my adult life. A lot of my shoulder pain is due to muscle cramps and tension because of the muscles having to work harder to support the loose joints but I have a lot of problems with my hips suddenly painful clicking or clunking so that they then feel as if they are out of position, I then can't put weight on my leg until I manage to ease things back to normal, at which point the pain is pretty much gone. My knees and elbows are similar. Even my toes can do the same (a bit of a problem if I am on the moors a mile from the car!).

The physio then announced that I didn't need any specific exercises and all I should do is "exercise". I knew this wasn't the answer, as I have been trying to do that for as long as I can remember, and my pain has become worse and worse, not better. And when I do manage to improve my fitness, soon enough I get an injury and then lose the gains I had made. Embarrassingly I then started to tear up, not surprisingly considering how serious this issue is for me I suppose. Noticing that, she relented and said she would get me some sheets of shoulder and hip exercises and some therabands, and that I could come back in a few weeks to see how  was getting on.

She did give me some good information on pacing and living with chronic pain and fatigue, although most of it wasn't new to me thanks to the internet. The information about how chronic pain affects confidence was useful. She also recommended strongly that I restart swimming. This was very helpful, as due to our tight budget I had not been able to go swimming this year, but this information from the physio enabled me to raise it further up our priority list, so I have been able to go once a week since then.

I made an appointment for a few weeks later, and went home, not sure what to think. I started the exercises and swimming and waited to see how things would progress. I then got a phonecall to cancel my next appointment as the physio would be away. I decided to delay making a new one and see how I got on working with the information I had for a while longer. After some experimentation, I have settled into the following routine:

Monday- a strength training workout, including the exercises given by the physio, or related ones, plus more for other parts of the body. I am using weights instead of the bands as they feel better for my joints (the increase in resistance from the bands through the movement, as they stretch, does not feel good as it causes considerable diagonal leverage on my joints) and are simpler to use.

Wednesday- DDPYoga workout (more about that later), done carefully, with modications where needed.

Friday- Swimming, usually 45 mins to 1 hour (I think if I can swim for an hour at mostly middle lane pace, I am not "very unfit"!). I love swimming, it is so soothing and while I am in the water, the aches and soreness in my body are considerably diminished. Sometimes my hips huirt at the beginning and i can't swim breastroke legs properly, but after a few lengths there is usually a clunk and then my hips start to function normally again (does that sound muscular to you?!).

In addition, I continue to walk the school run and lead a general active life. I also bought Wii Fit which I find useful especially for doing a short bit of activity to wake me up when I am feeling sluggish but not really needing or able to rest. Wii Fit tells me I have lost 12lbs since I began my new routine, in addition to some dietary changes with the aim of helping my digestive symptoms. I haven't gone hungry at all and am eating lots of nutritious foods, so I take the weight loss as a very good sign that what I am doing suits me and is improving my general health.

I rang the physio department this week to book my next appointment, to be told my physio is agai unavailable, and can't see me until late October. Still, that gives me plenty of time to see how my current plan is working for me. I need to work slowly and gently so time is needed in order to observe what the results are.

Well, rather a lengthy, dry post today, but I thought I should start by giving some background and explaining what I am currently doing. I'll write about my diet plan and DDPYoga at a later date.

Thursday, 20 September 2012

Why I am wibbly wobbly- What is hypermobility syndrome?

Hypermobility syndrome, or HMS (otherwise knows as joint hypermobility syndrome or Ehlers-Danlos hypermobility type (EDS III) is a hereditary connective tissue disorder. Due to a genetic defect, the body does not make collagen correctly. This leads to joints which can move outside of the normal range of movement, ie hypermobile joints. This does not necessarily mean being bendy like a gymnast or ballerina. Many people have generalised joint hypermobility, meaning that they have many hypermobile joints which cause no problems. Others are symptomatic and  therefore meet the criteria for a diagnosis of HMS.

People with HMS often develop painful and stiff joints. Some people are only affected in some joints, others have more widespread problems. In addition to joint pain, sufferers may experience muscle spain and cramps due to the muscles becoming overworked as they try to support the loose and weak joints. Joints are more easily injured- dislocations, subluxations (partial dislocations), tendonitis, sprains and strains may occur. Healing may be slower, so injuries are more troublesome.

There is another group of conditions which are related to joint hypermobility. Weak connective tissue throughout the body can lead to problems including IBS, gastroesophageal reflux, spinal disc problems, bladder problems, pelvic prolapse, hernias, varicose veins, striae (stretchmarks) and mitral valve prolapse. Some people also have problems with their autonomic nervous system, the part of the nervous system which regulates breating, circulation and digestion, leading to symptoms such as orthostatic intolerance (eg POTS), lightheadness, dizziness and palpitations. Dysautonomia can lead to the body over-responding to physical and emotional stresses, and over-producing adrenalin. Poor proprioception (sense of the body's location in space) can be a further issue, increasing risk of injury and even affecting the sense of self.

In addition, patients generally experience fatigue, sometimes accompanied by insomnia and/ or unrefreshing sleep. It appears that hypermobility syndrome may predispose to fibromyalgia and chronic fatigue. There is also an increased incidence of anxiety in hypermobile patients, possibly due to the body's excessive adrenalin response. Depression may also develop, especially as many people are undiagnosed for a period of years, often being told their problems are psychological, in their heads, or even that they are malingering or attention seeking. Family and friends may also be unsupportive, especially prior to diagnosis. Dr Alan Pocinki writes:

"Often, people who suffer from hypermobility syndrome are called hypochondriacs
or lazy because they avoid many everyday activities, because these
activities that cause them pain. Most of them don’t look sick and, as a result,
friends, colleagues, and even doctors can be unsympathetic. Furthermore, they
may spend years unsuccessfully searching for the cause of their chronic pain
and other symptoms because many doctors are unfamiliar with hypermobility
syndrome and its complex set of symptoms. Such long delays and lack of
understanding can lead to frustration (with doctors and with daily life), anger,
anxiety, and depression."

There is no cure for hypermobility syndrome, but there are a number of treatments and measures which can reduce pain and other symptoms, increasing quality of life and wellbeing. These include physiotherapy, and a carefully planned program of exercise and strength-building. Pain management, painkillers and education in techniques which support living with fatigue (eg pacing) can all be helpful. The symptoms of some related conditions, such as IBS, reflux, depression and autonomic dysfunction, can also be improved through medical care and the teaching of management strategies. However, this requires access to medical professionals and other experts, such as fitness instructors, who are understanding of, and educated on, the subject of hypermobility. This is proving, for many, to be very difficult to find, especially if privately funded support is out of reach. Thankfully there is a wealth of literature, online resources and support, and there are self-help measures that can be taken, though caution, and discussion with your doctor, physiotherapist or another appropriate professional (if you have one who is interested and helpful) is always a wise consideration.

For more indepth information, and an explanation of the current diagnostic criteria, please go to Joint Hypermobility Syndrome Article, Dr Alan Pocinki
Ehlers-Danlos Syndrome, Hypermobility Type

Other resources ionclude:
Hypermobility syndrome assocation
"Guide to Living with Hypermobility Syndrome", Isobel Knight