Dancing About Architecture

Here We Go Again…

My friends on Plurk will know I have been having problems with my mobility and have been in quite a bit of pain recently.  I was diagnosed with Fibromyalgia in May 2007, but my rheumatologist at the time Dr W was just pathetic.  He kept telling me that I was in pain because I was depressed and offered no advice on how to manage my condition.  I stopped going to him in July 2007 and tried to deal with the fibro on my own.

A couple of months ago, I was ready to try going back to a rheumatologist to help properly manage my condition and I was referred to Dr M.  Today was my first session with her.  She was amazingly thorough, asking me heaps of questions about my symptoms and did a complete physical including some neurological tests.

However, the outcome of those tests is that we are back at the beginning to try to work out what is wrong with me - the “It might be lupus” phase as I like to call it.  All autoimmune diseases are back on the table along with muscular disorders closely followed by neurological disorders and because all the letters from old rheumatologist say I am depressed, mood disorders as well.  I had blood and urine tests done this afternoon and I have to go and have a chest x-ray for some strange reason. I am really not sure what a chest x-ray is supposed to show.  Depending on the results of those tests, certain other tests will follow.

In the meantime though I am on a multitude of drugs.  Turns out that Dr W gave me the wrong instructions for taking my current medication which helps regulate my sleep cycle.  He told me to take it at bedtime, so I took it before brushing my teeth and heading to bed.  I am supposed to take it 2 - 3 hours BEFORE my bedtime, which explains why when I wake up in the mornings I feel absolutely exhausted as the drug is still coursing through my body and telling my body I am supposed to be asleep.  Also I got a lecture from Dr M about not experimenting with my dosage of medication.  When is the last time you heard a doctor asking you why you didn’t try taking more tablets?  It was a very surreal moment having her tell me off for not taking more drugs and also for not trying out other drugs to see if they worked.

So now we play the waiting game.  If my blood and urine tests come back with some interesting results I will be called in, but if they are normal I need to wait until October to see her again.  I have also been referred to a physiotherapist who uses Feldenkrais to help me with my mobility and general movement.  Has anyone had anything to do with Feldenkrais?  It sounds kinda wishy-washy to me, but the physio works at the pain management centre so maybe there is something to it after all.

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Tags: Feldenkrais, fibromyalgia, rheumatology

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Tips For Living With Fibromyalgia

Jeanie asked for some tips for living with fibromyalgia for her sister-in-law who has just been diagnosed. Instead of putting it in the comments section or a private email, I thought I would write a post so that others who have just been diagnosed can also read it and maybe my tips can help them out.

Assemble a good medical team

Once diagnosed with fibromyalgia, it is important to assemble a good medical team to help you through the challenges you will face. Believe it or not but there are medical professionals and other healthcare workers that do not believe that fibro is a real disease. They believe because a test does not yet exist to definitively diagnose this condition, that it is all in the patient’s head and will repeatedly tell you things like “ you are in pain because you are depressed” and other stupid nonsense. Fire them and find yourself a doctor that has actually read a medical journal about fibro in the last 20 years. They may be hard to find but they are out there.

Join your local fibromyalgia or arthritis society

Your local fibromyalgia or arthritis society can provide a wealth of information about fibromyalgia as well as the possibility of meeting other people with fibro. In NSW, the NSW Arthritis Society also include people with fibromyalgia and have monthly meetings where professionals speak about various topics. They also provide hydrotherapy classes for people with arthritis and fibromyalgia which brings me to my next point.

Exercise

When I was first diagnosed with fibro, I hated all the books and websites out there that told me that exercise was an effective way to manage my fibro. I could barely walk to the bathroom let alone exercise. However, as time passed, I realised, with much horror, that they are actually correct. Exercise releases endorphins which is the body’s natural painkillers. The trick to exercising with fibro is to start off slow and slowly built up your levels of exercise. If you can only walk to the bathroom, then walk to the bathroom a couple of times a day and then slowly build that up or walking the length of the house, then the length of the block and so on.

Hydrotherapy classes, like those run by the Arthritis Society, are brilliant for getting you slowly exercising and moving. They are specifically designed for people with limited mobility. I attended my local arthritis hydrotherapy class and despite being the youngest in the class, including the instructor, by over 30 years, I really enjoyed it and it made a drastic improvement to my pain levels.

Rest

I know I have just been talking about exercise but rest is equally important. With fibro you need to pace yourself. You have to be able to forgive yourself for not being able to do as much as you used to do and learn to accept that fact without feeling guilty. It is a really tough thing to do and is something I still struggle with. Take things slowly and break tasks like cleaning and other physical work into tiny chunks. If you overdo it one day, you will spend the next two days unable to do anything – and it really isn’t worth it.

Join online support groups

When you are first diagnosed, online support groups are a great way to meet others with fibro, learn valuable information about this disease, share tips and most importantly realise that you are not alone. However, a word of warning, be careful about the support groups you join. Some are fantastic and really inspire their members to live life to its fullest, but with others the members of the group almost try to outdo each other with just how sick they are. This makes a really negative environment to be in and will not help you live with this condition. It is important to know that fibro affects people differently– some people are unable to work and need mobility aids, whilst others like me are able to hold down full-time jobs and only need mobility aids at certain times. Just because you can work and don’t need aids doesn’t mean you don’t have fibro and don’t need help in learning to cope with this condition.

Tags: fibromyalgia

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One Year On

A year ago this week I started experiencing pain in my knees, by the end of the week the pain had spread to my entire body and I could barely move. A month later, I was diagnosed with fibromyalgia. Fibromyalgia is best described as a widespread chronic pain disorder. It causes pain and weakness in the muscles, fatigue and cognitive dysfunction. Nobody knows what causes it and there are few effective treatments for it. A year ago, I was working as a veterinary nurse. Two months later, I was forced to quit as my body just couldn’t handle the physical aspects of the job. I had to re-examine what to do with my life based on what my body was capable of. Needless to say, it was a tough period of my life.

I joined a couple of online support groups but I soon became tired of them as I felt that most members were trying to out do each other with how sick they were and how little they could do. I didn’t want to dwell on my condition and my limitations. I wanted to know what I could do, not what I couldn’t do. I stopped researching about fibro and quit going to my rheumatologist (he wasn’t much help anyway). I got my current job and tried to get on with my life. It worked to a certain degree. I gained back most of my mobility and learned to cope with the other crap that comes with fibro.

My life has changed dramatically from the life I had a year ago. I try not to dwell on the things I have lost but instead focus on what I have gained. I am debating going back to my rheumatologist to see if there is anything he can do for the persistent pain in my legs. If I can get that pain under control then maybe I can exercise more and be able to do more of the things I want to do.

Tags: fibromyalgia

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Thank you for pointing out the obvious

I have been using my cane for four days now and the one thing that has struck me is how many random people on public transport feel it necessary to point out that I have a cane. Do they honestly think that I didn’t realise? What is the point of telling someone that they have a cane?

Then when telling me I have a cane isn’t enough, they ask why I have a cane. I hate this. I do not want to share my medical history with a complete stranger. However, I have found that when you mention the phrase ‘autoimmune disease’ it seriously freaks people out. They hear ‘autoimmune’ and ‘disease’ and suddenly they need to be somewhere else, like I am contagious or something. It is really amusing to watch.

The people who are too scared to ask you questions just stare at you as you hobble past. I have had people literally stop and watch me walk past them. I am not seeing the attraction, but obviously for them it is very exciting to see someone with a cane. I am seriously expecting one of them to pull out a camera to capture the moment forever.

Being stared at makes me profoundly uncomfortable. When I don’t use my cane no one knows about my illness. I may walk kinda funny but no one takes any notice. However, as soon as the cane makes an appearance it is like having a flashing neon sign that says ‘person with a disability coming through’. Urgh.

The only upside of having a cane is that it guarantees me a seat on the bus. People can’t get out of their seats fast enough when I get on the bus. This embarrasses me greatly, but I am grateful for the seat, especially when my legs decide that they have had enough of being functional.

BTW, I just love this cane. I wonder if the flames make it go faster.

Tags: fibromyalgia, health

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Failing at Physiotherapy

Back in April of this year, I was diagnosed with Fibromyalgia.  Fibromyalgia is either an autoimmune disease, a neuroendocrine disorder or a chronic musculoskeletal pain disorder, depending on who you listen to.  What that all means is that no one knows what causes it, there is no cure and very few effective treatments.  What it does to someone who has it is cause muscular pain and weakness, fatigue, sleep disturbances and nerve pain.  It’s a bitch.  I had to quit my much loved job as a veterinary nurse and get an office job because my body just couldn’t handle the physical aspects of vet nursing any more.

In September, I started physiotherapy over at RPA Hospital to not only help with my fibromyalgia, but deal with the knee pain I had that no one knew the cause of.  The physios at the hospital noted that my knees hyperextend ie go backwards and that together with me being able to dislocate my thumbs as easy and painlessly as people can bend theirs,  I possibly had hypermobility syndrome too.  My feet are also incredibly flexible as well which means that I overpronate and that throws out my whole walking style.  Therefore, to compensate for all this I developed a way to walk that involves muscles I should not really be using.  When my fibromyalgia flares up, all of this compensatory behaviour breaks down and I have great difficulties walking.

So for the past couple of months I have been working with the physio trying to strengthen the muscles in my feet and learning how to walk properly.  I got some orthopaedic insoles from Athlete’s Foot which helped correct the overpronation and for a short period of time I was relatively pain free.  Then about a month ago, that all broke down.   Today, I was told at physio, that they had done all they could do for me.  My fibro meant that my muscles could never strengthen to the point they need to for me to walk properly and my best bet was to go to a podiatrist and get some proper orthopaedics, which hopefully would provide my feet with enough external support.  Other than that I am to keep practising my strengthening exercises and keep my knees taped in order to keep my kneecaps in place. I am not ashamed to say that after physio I had a little cry and then went to McDonalds for a bacon & egg mcmuffin and a hash brown.  I am all about comfort eating.  I used that time at Maccas to compose myself and get myself ready mentally for work.  Not good falling apart at work.

I am not upset at the physios, they honestly did a great job and finally got to the bottom of the knee pain I have had on and off over the past 10 years, which is more than the numerous physios I have been to in the past ever did.   It is not their fault that my body is seriously fucked up.   I am hoping that the podiatrist can provide me with some amazing orthopaedics that will solve all my problems.  However, a tiny part of me is terrified that this won’t be the case and I will be left with mobility issues.  I already have a cane (which pride prevents me from using when perhaps I really should),  I do not want to go down the path of even more mobility aids.  Therefore, I will be endeavouring to think positively and hoping that the podiatrists will be able to cure my mobility issues.  But tonight, I will be a whiny brat and wallowing in self-pity.

Tags: fibromyalgia, health

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