May 21, 2013

The F Word

After months of tests and exams, I have an answer, sort of.

I have been diagnosed with Fibromyalgia.

I say “sort of” because there is no definitive test for this condition and it is diagnosed by a set of symptoms and ruling out other possible causes. Thankfully, all the terrible causes for my pain, fatigue and the burning/itching in my muscles, have been ruled out.

The treatment plan is medication and “gentle” exercise. Exercise that does not put stress on the joints, like swimming, aquafit, walking and yoga. I can, and do, do all of these in varying degrees of proficiency. My family doctor, my rheumatologist and my endocrinologist have strongly advised against running/jogging until this flare up has subsided and the pain has stabilised.

One of the biggest symptoms for me is poor sleep because the pain keeps me awake or wakes me up from sleep. Unfortunately, the lack of sleep plays havoc with diabetes and hypothyroidism – both of which I also have.

My plan, for now, is to take the medication to stabilise the pain and help me sleep – which will in turn help me get my blood sugar back down to the normal range – where it’s been the last 8 years except for the last 4 months while I’ve been going through this. These two things will help me continue to lose weight.

Oh and a bone scan shows I have plantar fascitis – but since I am not feeling the pain associated with it and I have no pain in the heels when walking/running/climbing stairs – I’m ignoring that diagnosis.

I haven’t been a complete slug while this has been going on, I walk most days – at least 2-3 km and go up and down the stairs in my apt building several times a day. And I intend to do some walks in events this summer and when I start to feel better, I will try running again…even though I will have to go back to Week 1, Day 1 of C25K. But I know I can do it this time, so I am sure it will feel much easier.

Today I had to go to Toronto (a 2 hour trip each way) to see my doctor and I am truly exhausted, both physically and mentally. This is has to get better as this is the same trip I take to go to work each day and I can’t afford to be off work much longer.

I’m hopeful that this medication will work and not have horrendous side effects. I have the utmost trust in my endocrinologist and my family doctor.

I have tried other medications but had to stop them for varying reasons after a very short time.

I have also been reading all I can find about Fibromyalgia  and there is a lot of anecdotal evidence/studies that indicate eliminating or even reducing wheat and sugar help to reduce the symptoms.  Two weeks ago I decided to go completely 100% sugar and wheat free.  I haven’t noticed a change in my symptoms yet but I am going to stick with it. Even if it doesn’t help this problem, it’s still a good thing.

Thank you to all of you who have emailed or sent me messages asking about me or keeping me in your thoughts and prayers. It has been a huge comfort.

15 comments:

  1. Now that you have an answer, you know what you are dealing with. I don't know much about fibromyalgia, but if the dr. told you not to run, then maybe something like aquafit or aquajogging might make you feel better. Take care of yourself!

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  2. Enz! Keep up your awesome eating habits, walk, keep on your doctors for information and take care of yourself!!

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  3. Sometimes it helps just getting a diagnosis. What I've learned after 20+ years of living with systemic lupus, is that I know my body best. I also work in the medical field, so I expect my physicians to respect my knowledge and act as a partner in my care, not a dictator. It's important to find a doctor that you click with.

    Rest is just as important as activity.

    Take care! xxx

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    1. Thanks for the good advice.

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  4. I have trouble sleeping too, my legs just hurt so bad all the time. I'm glad you at least know what direction to start heading in, so hopefully things will start getting better for you now.

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  5. Enz, I'm sorry to hear this because I know fibromyalgia can be a pain in the ass. Luckily, it's more manageable now than ever. My aunt has had it for decades and it was very difficult for her back in the '80s since it was difficult to diagnose and treat because it wasn't really well known or understood. But now that it's gotten attention in the medical community and it's been studied, there are more ways to handle the symptoms. Your diet and moderate exercise will help immensely. Just stay healthy and do what you can as long as your doc is on board with it. :) You'll be okay.

    HUGS!

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  6. Hell, Enz, that's awful. I'm so sorry to hear your news. My best friend (and my sister-in-law) both have this and it's been very debilitating for them both.

    My best friend has the most AMAZING positivity though, and I think it's really helped her throughout this trial. She is a firm believer in listening to your body and adjusting life around her diagnosis, but not letting it stop her without darn good reason. She's an inspiration, to be honest.

    I've read a few scientific papers about this on her behalf, and it's been suggested that Coenzyme Q10 and magnesium supplements may help.There is some evidence that acupuncture (and reflexology) can help, as can adjustments towards eating a much less inflammatory diet, i.e. to go low carb (as you said, cut out the wheat and sugar). The drug Nabilone has also been trialled for fibro sufferers - but it can be prohibitively expensive.

    I have the papers as PDFs. If you'd want to see them, we could figure out a way for me to send them to you - or I could send you the references.

    All of these things are worth discussing with your healthcare practitioner if you get chance. In the meantime, chin up and have a great big Zen hug from me.

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  7. Oh, it's so frustrating to have physical issues when you're trying to get somewhere. I truly hope things improve for you. Interesting about the plantar fasciitis, I have that and it has been a living hell for 11 days short of a year. I had to give up my dream of being a runner, bought a good bike, and that's my outdoor sport now. Chin up, carry on, kick some butt. Jo 282.5

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  8. Changing your diet will take up to 3 weeks before you see improvement so just stick with your plan and soon you should see the benefits.

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  9. Enz, I wish you good luck. Keep the faith.

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  10. Oh Enz, I don't know what to say...but at least you have a diagnosis. Like Norma said, keep your eating tight and stay off the wheat and sugar. I don't have any condition as such, but I feel so much better when they are not part of my diet. So proud of you for keeping active.
    Take care my friend and keep us posted.
    Sending you hugs all the way from DownUnder xxx

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  11. Very sorry to hear about the fibro. My mother was diagnosed with it about 15 years ago. She's had ups and downs. Once she found out, she read everything she could find and eventually found a support group because she really felt alone facing htis condition.

    She sayd that using gentle daily exercise (walking, swimming, yoga, thai chi, qigong) as well as healthy eating habits helps a lot with managing the pain. Getting a good night sleep on a great mattress helps her when things are not so great. But everyone is different... Listen to what your body is telling you. Good luck and take care.

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  12. I'm glad you have an answer and it sounds like you have a wonderful team of doctors. Now you can action and feel better! Rest up! Xxx

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