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

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?

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.






To leave feedback click the comments link below. Your comments are appreciated.