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Holding Pattern

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Oh, how I wish I could come here and say that I have turned a corner. That the massive injection of steroids I had last Monday or the four week course of pred did it’s job and my body is now taking the hint and laying down weapons, stopping it’s vicious unprovoked attack.

I wake up every morning and try to lay for a moment and run through what’s going on in my body. Check each joint, how are the pain levels, Ali? The answer is always the same. It’s like waking up to the roar of a furnace blasting my entire body with white-hot pain.

We go through the routine. I call Beefy (who has already been up for ages and taken the kids to school, usually) and he gets my morning dose of pain meds, gets my breakfast, heats my eleventy million rice filled socks and giant pillowcase (also fetching children’s tights wrist bands) in the microwave so that we can try and get some of the muscle spasm under control and I get some pain relief while I wait for the meds to kick in.

I make a deal with myself that I have to eat x amount of whatever breakfast is and them I’m allowed to stop. I have almost no appetite. All eating is a bargain I make with myself. You have to eat enough to keep going, Ali.

Beefy tells me: “Look how much you ate! Well done.”

We laugh but my smile is tight. The laughter hurts.

I saw a different GP in the practice a couple of weeks ago when my back had some sort of drastic muscle spasm attack that left me in unprecedented pain. She prescribed muscle relaxants that help SOOOOOOOOO much. My GP is really against me taking them. She keeps asking me if I have.

“They are addictive you know”.

“Only occasionally”, I say. This is mostly true. Yesterday was a terrible day, I had three yesterday. Three is half the maximum dose as prescribed but three is three too many for my GP. They just help soooo much. Sometimes I just need the relief. I feel guilty.

I am just making my life bearable from moment to moment.

Still don’t know about bone scan results. I can’t imagine that they will show nothing. How is that even possible when I feel so awful? It is possible though. If anyone is going to end up with useless bone scan results it will be me.

I read up about the anti-depressant the PMU want me to take. It is not indicated (even off-label) for my condition. It is indicated for osteoarthritis, fibromyalgia, neuropathic pain caused by diabetes, anxiety and depression. Rheumatoid arthritis? No.

I read studies and reports from patients. They report very little help with pain and terrible, crippling side-effects. Even those prescribed it for depression who have had some success say it was a nightmare in lots of ways. To cap it off, there are apparently months of relentless, horrific withdrawals when you try to come off it.

Why would the PMU think it would be a good idea for me to try this drug if they are so concerned about my being addicted to pain meds?

They are moronic arseholes.

There can be no other explanation.

I had left myself open to the idea of trying it at some point but now I know that I will definitely not try it. Some of the patient reports said they had been off it for months and were still suffering. They said they were scared they would never feel normal again. There is nothing any doctor could say now to make me try it. I will not take the risk.

I am waiting to here back from the Rheum. I hope she has something else to try.

I am just waiting.

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5 responses

  1. Waiting is the hardest part.

    xx

  2. I don’t even know what to say – I’m in the same place. I’ve on the second of the worst two days I’ve ever had – I’ve never been so incapacitated.

    I’m hoping that someone soon has a reasonable answer for you. I’ve only ‘known’ you for a little while, but I think of you every day.

  3. Moronic arseholes running their own damned agenda that has not much to do with what’s best for you.

    I have been wondering how your scan went. Just get through one single day at a time. Something will present itself soon. And don’t be ashamed to do what it takes to get through each day. You have a RIGHT to live your life and you can’t do that when you’re suffering.

  4. If I could take even a fraction of this pain for you I would. I really, really hope the bone scans give you some news that means that you can take some positive, helpful action, and soon.xxx

  5. *sighs* I wish I could help. all I can say is keep on pushing those bloody doctors for answers. LOVE xoxo

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