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Moving forward

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So, today was the long awaited Rheum appointment.

I finally got to see my bone scan report. I would have liked to see the actual images but they don’t include those with the report.

Basically, it showed nothing. I have no (or very minimal) arthritis activity. Very minimal inflammation. It did show some joint degradation, particularly in my shoulders and the joints between my collarbone/shoulder and collarbone/sternum. That’s a bit annoying as I had hoped that we had hit on the right arthritis drugs quickly enough that I would be without joint damage. It’s brought home just how quickly this disease can damage my joints and I’m now just really grateful that my arthritis is actually under control.

So, you may ask, why have I been in so much crippling pain?

After we discussed the bone scan I was a bit crestfallen, I was predicting that the next words out of R’s mouth would be to say that I am fine and I am imagining it all. I think that would have been the last straw for me. Fortunately, she was quick to reassure me that she knows I am in pain, the pain is just not inflammatory.

She feels that I am experiencing neuropathic pain.

In particular she feels that I have fibromyalgia.

I’ve always sort of thought that fibromyalgia was a bit of a weird mystery condition. It seemed so enigmatic. It didn’t make sense to me and I have encountered so much information that seems to suggest a strong association with depression and anxiety. I just never thought that I fit in to those categories. I’ve also read that there are still doctors that don’t believe in it.

I didn’t want to have fibromyalgia because it’s something that can’t be measured. There are no blood tests, you can’t have a diagnostic scan. It’s just a cluster of symptoms (many of which I have) most notably for me though, fibromyalgia causes serious pain.

I didn’t want to have fibromyalgia because I didn’t want to add another illness to my repertoire. I’d like to stick to just the arthritis, please.

I don’t want to be the person with a hundred different medical complaints. Do you know how that sounds when you see a new health professional? I have this, and this, and this. Sound like a hypochondriac much? I hate being unwell and I hate being in pain and being labelled a hypochondriac, that people might think that I want to be ill? I’m not really up for that.

R doesn’t seem to think it’s an imaginary condition though. Apparently Rheumatologists believe in it and treat it. We talked about how well it fit with many of my symptoms. Apparently many people who suffer from RA also suffer from fibromyalgia. Apparently arthritis patients who develop fibromyalgia tend to experience pain in the joints that are affected by their arthritis, who knew? This diagnosis would also explain the fact that my pelvis has continued to case me pain despite the fact that it is now structurally sound.

The more I read about it now the more boxes I can tick. I have soooooo many of these symptoms, predisposing factors, possible causal factors. It’s mind blowing.

She has prescribed a new medication that is supposed to change the electrical activity in my nerves and in my brain. If it works I will be able to stop having my other pain medication, which would be fantastic. Not just fantastic, it would be monumental.

It may or may not help to reduce my ongoing muscle spasms (also a symptom of fibromyalgia) but if it doesn’t there are some medications we can try for that too.

I don’t want to have fibromyalgia. I don’t know why my body has decided I could do with a bit of extra pain but I am feeling pretty optimistic tonight. If this medication works it could change everything. I might just be able to start living my life again. I am having fantasies about being able to exercise*. Something I used to do but haven’t been able to do properly for years. I am feeling that there might just be a light at the end of the tunnel and THAT would be amazing.

I might always cringe internally at the label of fibromyalgia but then again, if this works and I get my life back, I might not care at all.

* I can’t quite believe that I wrote that sentence**.

** I also can’t believe that it’s true. Surely it’s not normal to long for exercise. That’s just wrong.

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5 responses

  1. This is really positive news! It’s not a welcome diagnosis, but it is a diagnosis and it comes with new treatments to try. It really sounds like you’ve found the missing puzzle piece.

  2. Please, please, please let these meds work for you. That would be just about the most awesome thing imaginable.x

  3. Fingers crossed that finally you have found an answer to all of the questions and that the treatments do work for you. Bring on real life and fun!

  4. The fantasies are normal; I’m quite a sedentary person naturally, yet once I knew I had fibromyalgia I wanted to be out in the park, running around and pounding on treadmills. Once I thought that could be taken away (and it has been), I stopped taking it for granted.

    Can I be nosy and ask… what meds have you been given? No worries if you don’t want to say, but I’d be interested as I’ve been experiencing more pain lately.

    • No worries, I’ve been prescribed Lyrica (pregabablin) and am just working my way up to the dose that is recommended to treat FM.

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