Pain… 24/7

#Fibro - Awareness Day
#Fibro - Awareness Day (Photo credit: sand625)

Today my rheumotolgist confirmed for me that I have fibromyalgia (fibro).  Just another label to add to my collection.  It was over six months ago when I actually laughed at a GP (General practitioner) doctor who said she thought I had fibro.  I knew enough to know it wasn’t an illness I wanted to have and while I was in pain, I struggled to accept what she said.  Several doctors on, and I’m not laughing.  Fibro is now my reality and at least I have some explanation for the pain and tiredness that is completely unrelenting.

Fibromyalgia is:

“a chronic condition that causes pain, stiffness, and tenderness of the muscles, tendons, and joints. Fibromyalgia is also characterized by restless sleep, awakening feeling tired, chronic fatigue, anxiety, depression, and disturbances in bowel function.”.

In reality what that means for me is lots of pain in my muscles, my joints, my everything.  And I am completely exhausted regardless of how much sleep I get. At times my muscles are weak and I struggle to lift my 15 month old niece.  Our cuddles last as long as I can hold her.  This is actually one of the most heart breaking parts of it.  My feet and my legs are the most painful but somedays are better than others.  Of course that means some days are worse and just moving is a struggle.

What causes fibromyalgia?  Apparently the cause is not known but affects predominately women, with onset most common between aged 35 to 55 years.  I am 46 years old.  The onset of it is said to be : “associated with psychological distress, trauma, and infection“.  Like usual most of the information I have gained has been from people I know who have fibro, or people I know who know people with fibro.  Yes that is a little crazy but it’s hard to get sufficient information from busy doctors and when it’s affecting your life this much you just take what you can get.

So why do I have fibro?  No doctor has even begun to explain that one but here is what I know.  Last year was my most stressful year ever.  In addition to some 10,000 earthquakes (no, I’m not joking!), my parents lost their home in the worst quake, they then moved in with me (we hadn’t tried to live together since I was 18), my own home was severely damaged (and still is), my father then died suddenly and I found myself pounding his chest trying to resuscitate him without success.   You can probably guess the stress that followed.  Yes, I think “psychological distress and trauma” could cover me.  Toward the end of 2010 I was diagnosed with hyperthyrodism, caused by an auto-immune disease called Graves’ Disease.  Apparently auto-immune dieases and Glandular Fever, which I had at the age of 28, both are contributing factors for fibro.  Basically it seems I was a sitting duck.

The problem in front of me now is that because of the medications I take for my mental illness, there is apparently no drug that I can be given to treat this.  For some months I have been using anti-inflammatories and codeine.  These have done next to nothing and I thought that once I got the diagnosis today I would be able to be prescribed the appropriate drugs to treat the nerve problems that exist.  These are generally anti-depressants and my doctor has told me today that because I already take (mood stabiliser) lithium carbonate and (anti-depressant) clomipramine, that there is nothing she can give me.  I feel like the wind has been sucked out of my sails.

My mental illness drugs have been a problem for sometime, and now they cause a problem again.  I have been on this combination of drugs for nearly 10 years and in that time, with the help of a very good psychotherapist, I have stayed out of hospital, had no suicide attempts, and I have dramatically reduced the incidents of self harm.  This is a huge improvement on the previous years so I am inclined to think these drugs work for me.  But my auto-immune disease is caused by the lithium.  I will always have it, and am still awaiting long term treatment for the thyroid problems it has caused.  Last year I had the nasty (to say the least) experience of lithium toxicity because there are many drugs you can’t take with lithium, and a doctor forgot I was on it when she prescribed something that clashed.  I changed my doctor but I am left with a certain level of paranoia about medications and particularly lithium.

From what I know so far my alternatives for treating the fibro are stress reduction and exercise.  My doctor has recommended some form of cognitive behavioural physiotherapy.  Tomorrow I will find out what I can and see if I can get insurance coverage for this.  Without it, it will be out of the question.  I have yet to understand how exercise fits too as right now any exercise wipes me out for at least the rest of the day.

Obviously I am new to all this and I have much more to learn.  But for now, my head is spinning.  The thoughts have been racing almost out of control since talking to my doctor about five hours ago.  I assume the worst and jump to somewhat crazy solutions of self harm, to have me regain some control, and even to the point of thinking life is over and I may as well kill myself now.  I need to say this is normal for me.  I struggle to gain control of what I am feeling and I leap to dramatic end results.  Thankfully I am in control enough to stop myself acting on these thoughts.  I am used to this.  It doesn’t make it any easier, and I feel extremely frustrated with myself.  It just adds to the problem.  If I had no mental illness and was diagnosed with fibro today, perhaps I would be concerned at how I am to manage this chronic illness.  But having mental illness, it just makes everything so much more complex, frustrating and it is even vital that I seek the best advice and make my decisions carefully.  My life depends on it.  Fibro will not kill me although I now have it for life, but getting my brain to work appropriately and safely is a whole other ball game.

I’m off to see my pharmacist for advice in the morning.  As someone I trust he is a good place to start this journey.

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20 thoughts on “Pain… 24/7

  1. reversinginsanity

    My step-mom has fibromyalgia. Honestly she never comes out of her room. Even on yearly celebrations like Christmas or our American Thanksgiving. She just lays in her bed. She is also very addicted to pain pills and alcohol, I am sure because of it. I will pray for an alternative healing for you. Have you considered seeking out alternative therapies to just TRY? Maybe accupuncture…. reiki… etc.? I know this is a new confirmation of diagnosis.. just trying to help you brainstorm. I am not sure of the legality in NZ but marijuana is a known pain killer. It helps AIDS patients, Cancer Patients…. etc. In some states in the US they have medical marijuana for things just like this. My heart hurts to even imagine what kind of pain you feel. 😦

    1. Thank you. Gosh I so don’t want to be tied to my bed. It must be very hard on your step-mom. I will definitely look into alternative treatments but marijuana (even for medical purposes) is still illegal in NZ. It also makes me depressed so I don’t need ‘help’ on that front. But I will find something. 🙂

  2. I was diagnosed years ago and still struggle some days just to get out of bed. Try http://www.fibromyalgia.com/ for some useful tips. they have helped me over the years.

    As far as the exercise, do it as you can. Gentle stretches, yoga and swimming are well tolerated by most fibro patients. Remember to take it easy and drink lots of water.

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  4. Hi there,
    I’m so sorry to hear that you are dealing with this. I won’t lie. Fibromyalgia has turned my life upside down, and I would not wish it upon anyone. I would like to encourage you by saying that I personally tried various medications for years and after beginning to feel like I was being experimented on, and having trouble identifying what was a symptom or a side effect I decided to go at things from a more holistic/whole health approach. I kind of wish I would have started there in the first place! I am gradually finding ways to take care of my body as a whole vs just treating symptoms, and though it is still very trying, I feel more peace about these choices. The truth it though, that no matter what anyone says (in my experience people came out of the woodwork with advice!!), it is YOUR journey, and you have to be determined to research, educate yourself, and decide what you feel are the best choices for you. Don’t let anyone force things upon you that you are not ready for, or don’t feel like are a good fit. There are so many opinions, and everyone’s body responds differently, and you are the only one that can decide what is best for you. Wow. This is a long, rather preachy comment. :/ I just would like to encourage you, that there is a life after a Fibro diagnosis. A lot of good life to live. 🙂 It is not an easy road at all, but we are stronger than we think! Wishing you the very best. ~Aimee

    1. Thanks for that Aimee. I really appreciate your advice and one day on it looks like that is the route I will be heading down. And I totally agree we are stronger than we think! 🙂

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