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.
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April 10th, 2008 at 3:35 pm
Ooh - spooky comments section!
lol - thank you for that. She is amazingly computer illiterate, so I will print this off for her.
Cheers!
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April 10th, 2008 at 4:38 pm
Jeanie: I didn’t think my comments section was that spooky.
I hope my tips can help out your sister-in-law. Let me know how she is doing.
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