*DISCLAIMER: I am not a doctor, therapist, or health professional of any kind. I’m sharing things that I have been taught that have helped me (or not). This is my experience.


Sunday, June 5, 2016


I thought I would write an update about what happened with my appointment with rheumatology and write out some emotions.

My appointment with rheumatology was...depressing.  The doctor said that from the physical exam it looks to be fibromyalgia.  She said that some of the medications I took close to the appointment could have affected the exam so I am welcome to come back in three months for another exam.  She ran plenty of bloodwork and did xrays.  She is supposed to call in two weeks with the results.  The reason it was depressing is that if it is fibromyalgia (which she felt very strongly that it is):

1)  There is no way to prove it.  When you have a psych diagnosis and drug use history it is hard enough to get people to believe you, damn near impossible when you're talking about pain.

2)  Medication is unlikely to help and I have tried most of the options.

3)  She insisted that I would have to find ways to feel better through eating healthy (which is expensive and eating what I want is one of the few pleasures I have left), exercising (which causes more pain), and meditation.

4)  While there may be some days that are better than others, I will never be well and the pain will never really go away.

I have been fighting with doctors and nurses trying to make absolutely sure that there is no way it could be something else; something that I can prove and something that there are real treatment options for.  I don't want to have to defend myself against accusations of trying to score meds, making up the pain, or trying to get attention.  I guess it is very similar to mental illness in that no one can see it and you can't prove you're sick.  You just feel it.  And the options for treatment are often ineffective with severe side effects.

With the debilitating pain and fatigue, I am also struggling with memory and keeping my thoughts straight.  I can't keep the days straight, forget what I'm doing seconds after I decide to do it (several times a day), and I have trouble figuring out how much time has passed.  Even now I'm having trouble focusing my thoughts enough to write.  Insomnia, while a problem in itself, exacerbates all the others.  Add in GI issues (which are too TMI to explain) and trouble regulating my temperature, it's like the perfect storm.

Other than my already scheduled colonoscopy/endoscopy, I have decided that unless there is something definitive on the test results I am just going to accept that there is nothing anyone can do.  I will take my medication and stop trying to convince people to help me.  I just have to accept that this is the way things are.  And as much as I would appreciate people helping me, it has become very clear that even if I can convince them to, it comes with very extensive strings.  I do not have the energy to continue to give what I don't have to people who are only around when they need something.  I have nothing to give.  I have to put myself first.  That's all I can do.

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