Tuesday, December 28, 2010

Seeking Answers

This time last year I was celebrating the news that my fibromyalgia was in remission. I was weened off the medication which I took for the fibro pain and my hope was renewed. Things were suddenly looking up. Little did I know that in less than a years time, that hope would be completely shattered. In September this year I saw a different rheumatologist while the usual one who I see was away. This rheumatologist gave me a totally different opinion and after my consultation I shared with you my despair in learning that my fibromyalgia never went into remission to begin with. It took an awful couple of weeks to get over the shock. The first day I was an emotional train wreck. Physically speaking nothing had changed. I was still experiencing constant pain but instead of having pain in my muscles, it shifted to my joints (now this is where it gets confusing). Fibromyalgia is a chronic pain condition that causes constant pain and aching primarily in the muscles but can also effect joints, but I also have arthritis and so in my case the arthritis has caused the fibromyalgia. At my appointment last Christmas I displayed minimal signs of 'pressure' or 'trigger' points which is the main diagnostic criteria for fibromyalgia, so this was probably one reason why my rheumatologist thought it had gone into remission. Anyway, where was I...... physically speaking nothing had really changed but it was tough emotionally and hard to get my head around the fact that I spent the last nine months thinking that my fibromyalgia was going when I still have fibromyalgia and no one can tell me when/if I'll get better. So to sum up the last nine months, here it is numerically:


1. I was told my fibromyalgia was in remission and that my arthritis would likely disappear also
2. I weened myself of fibro medication (under my rheumatologists advice)
3. Three months after my joint pain worsened and I entered struggle town
4. I was told that my arthritis was getting worse
5. I began different drug trials for the treatment of rheumatoid arthritis
6. None of the drug trial worked
7. I was told (by an other rheumatologist) that the reason for my increased joint pain was not due to the fact that my arthritis was getting worse but rather due to fibromyalgia aggravating it
8. I learned that 5% of my chronic pain is because of rheumatoid arthritis, the remaining 95% because of fibromyalgia
9. I started back on fibromyalgia medication
10. Joint pain drastically improved
11. Fatigued flared worse that ever before.... currently still struggling.

And that just totally did my head in! So, in simple terms my nine months of joint pain torture was caused by fibromyalgia seeing as I wasn't being treated for it . So that is the reason why the drug trials for arthritis failed- because fibro pain can't be fixed with arthritis medication. Seeing as the fibro pain wasn't under control, I couldn't tell whether the arthritis drugs were making a difference. So, you could imagine that I had many unanswered questions that I was seeking answers to. Well I've had another appointment with my rheumatologist, since being told about the fibromyalgia incident and I did get some answers to the following questions:

Q. Why Was I told that my fibromyalgia was in remission when it wasn't?
A. I didn't get an answer to this, she dodged it completely! The lesson to learn here? Doctors make mistakes, they are human also. Forgive and move on. Besides this mistake, she is the most wonderful rheumatologist, and she really cares about even the small details of my life, and the bonus- she bulk bills me every time I she her! I don't pay a cent. Ever. Even when I've had cortisone injections, I've been bulk billed! Such a blessing, and for that I am always grateful.

Q. Why would stronger arthritis drugs be discussed if I don't qualify/need them at this time?
A. She thought I was still on fibromyalgia medication and therefore thought that the arthritis was getting worse. And she was the one who told me to come off the medication in the first place! Major miscommunication. Obviously missed noting it down on my file and completely forgot about it. Like I said, they make mistakes. I'm proof.

Q. Seeing as the Fibromyalgia pain is a little more manageable now, will the arthritis drugs work? Can I try them again?
A. During my appointment I presented with fatigue being the worst symptom, so she said fatigue doesn't warrant a drug trial (which is confusing as rheumatoid arthritis causes fatigue).

Q. Should I be seeing a psychologist for cognitive therapy, will it even help? How will it help?
A. "It depends on the person, not everyone benefits from it". As there is no proven cure for fibromyalgia, I've decided not to give this therapy a try. Purely because my rheumatologist didn't highly recommend it, my gp said that it requires a lot of brain power of which I do not have with chronic fatigue, and the fact that it's expensive. And not to mention the fact that it may not even help/work for me.

Q. What exercise should I be doing that won't cause my fatigue to flare?
A. Seeing as I'm utterly exhausted just from doing gentle stretches, she said anything else is pushing it. I feel like such a lazy sloth! I'm just sticking with the stretches. Better than nothing, right? Although at the moment, I'm exhausted from just washing my hair.... stretches have completely gone out the window for now.

Q. Should I be seeing someone trained in fibromyalgia and exercise for a tailored exercise plan when I do feel up to exercise?
A. There is no set treatment/exercise for fibromyalgia at present, little is known about it and everyone has different opinions about going about exercise. So know one really knows what to do so for now I'm just going with whatever. If I feel I can manage a 5 minute walk, I'll do so but If my body is telling me to rest, I'll take as long as I need to rest. I don't push exercise, I've learnt that the hard way- major flare.

Q. Should I be seeing a chronic fatigue specialist seeing as fatigue is a major issue at the moment?
A. "Yes". Four years on after the onset of debilitating fatigue my rheumatologist has finally decided that it's probably best to see a fatigue specialist, especially considering this is my worst flare ever. So, I'm on a very long waiting list and by long I mean anywhere between 6 - 12 months!! Just goes to show how many people are struggling like me. It's comforting to know I'm not alone (not so comforting that people are suffering though).

Well, I got some of the many questions I had answered. Even though I can see no end to this, it's good to know the truth- that there are no real answers and solutions for now, so that's what I'll have to settle for. I'm doing well on the fibromyalgia medication. I'm now sleeping through the night, sleeping way too much actually. The drug makes me so darn tired, which also isn't helping the fatigue. I take the drug endep (for those of you who are wondering)- it's an antidepressant/ sedative that is one of the very few drugs available to help with fibro pain. I take it at night to help me sleep. If I don't take it, I don't sleep. The downside is I feel drowsy everyday. It's a horrible feeling but I've grown use to it. Get this though- my rheumatologist said that it should be helping with the fatigue...what the?! It's a sedative for goodness sake! I get where she's coming from though- a couple of years ago I was taking a much higher dosage than what I am currently taking now and I was able to work between 3-4 short shifts a week! So not all of my fatigue can be blamed on the drug. So I've officially entered chronic fatigue crisis city! I cannot even begin to explain to you how bad the fatigue is. Words cannot describe it, and fatigue is actually an insult- it's so much more than fatigue, but more on that later. In recent news though, my arthritis pain has gotten worse within the last two months despite taking the fibro medication. Especially my right knee. It's so painful to walk sometimes. I have my next appointment with my rheumatologist in February, so I'll beg for a cortisone injection, or see what she suggests. Everything just seems like such a mess!

So that's all the recent happenings. Oh, and on a side note I dropped into my work today, just to say hello, let them know I'm still alive and that kind of thing. For those of you who don't know, I work at Lincraft which is a craft/haberdashery/home furnishings store. I used to work part time up the front at the express counter, then changed to working as a casual and now I haven't worked for several months. My boss is still holding my job open for me despite not knowing when I'll be able to return. I kid you not. I have the most amazing boss and the most wonderful workplace and for that I am always thankful. So yes, I dropped in today (mainly to buy craft items, because they had 30% off!!) and I received my $10 dollar Christmas bonus! Ha! I also stopped by just to let my boss know where I was at (see, it wasn't just for the shopping!). I asked how he was to receive in reply "better than what you look, I can tell you that!" (Some days my illness is visible, there is only so much foundation can conceal and more to the point, thanks to Christmas, I'm beyond buggered.) And I was nearly hugged to death! Strike!! It's nice to know that my crappy customer service skills are appreciated (ha!) and that I still have a place to contribute my skills in the world when my health improves. In mentioning that my return to work seems highly unlikely for now, unless my fatigue improves; my boss questioned if anything in my life goes right. To tell you the truth right now, nothing seems to be going right, but despite things seeming downhill and on a totally different track to what I would have liked- every things sweet. One reason: Jesus. Because of Him, I get by and I do the best I can. I have so much to be thankful for and I'm heading into 2011 full of dreams and excitement; feeling positive and hopeful. There is always, ALWAYS a reason to hope.



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2 comments:

phylor said...

I understand your fatigue. Looking back, it was the first sign that something more than my usual health issues was going on. Like you, I blamed the meds. But even when I'd had a nerve block for my chronic facial pain, and was taking less drugs, I was still exhausted.
It is hard to describe the fatigue: I liken it to being in a bowl of jello without a spoon. Or, my life is going in slo mo!
Wishing you good luck with your health issues, and all the best for 2011. It's great that your work still has a spot, and a hug for you!

Emily Ruth said...

I love your description! That's such a great way to explain it

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