Fibromyalgia – Where Do You Go When There’s Nowhere to Go?

Fibromyalgia: Where do you go when there's nowhere to go?The warning signs were already there really – when my doctor said “I have no more advice for you”, I thought it was a lack of training, or awareness. A General Practictioner by definition can’t be a specialist in everything – understandable really. So being referred to a Pain Management Clinic, a team of people who exist to help manage your pain, it seemed like there was an avenue available. So after today’s appointment, which was designed to be a medication review, what am I left with?

Apparently I’ve Tried All Current Medications

The last drug I was advised in February 2017 was a ‘new’ drug to hit the market. So, with an open mind, I tried that. After two months on this medication I was crying every day and barely able to get off the sofa much less be a semi-functional human being. So my own doctor advised (rightly) that I go back to my current mix of medication until the pain clinic could see me again. My doctor actually said this ‘new’ drug had an almost 99% failure rate so he wasn’t surprised it hadn’t worked. Begs the question “why was I put on it then?” but what’s done is done.

Fast forward to today, some 6 or 7 months later. Reporting the results of his last advice, and looking down the list of medication I’ve been on in the past, he basically concluded I’d tried all currently available drugs. Granted he could increase the dosage, but the body builds up tolerance to highly addictive substances so that wasn’t wise. On this I agreed.

There are some new drugs coming to market, but that was “years” away. That means, from a medical perspective, the pain managment clinic has no more advice for me. Great. Please read on.

Fibromyalgia Research in the UK is Lacking

The one positive thing to come out from this was: The Pain Clinic were the first medical professionals to openly admit to me that research into Fibromyalgia is lacking. Because diagnosis is kinda vague, and looks different for different people, a scientific framework is really hard to put together. There’s no concrete starting point for experimentation. I’m guessing funding is also an issue because funding first requires a proposal of approach to research. So Fibro’s in a Catch 22 – it needs funding to be able to do the research, but research is first needed in order to get the funding.

What the heck happens now?

Well my meds won’t be changing any time soon and I have to accept that my felt pain is highly likely to increase each year. Short of a medical break-through, there’s no point me asking about medication for 5-10 years. I’m not exaggerating. I’ve never put my hopes on tablets fixing me, but being able to make life bearable, or work possible seemed a reasonable request. Apparently not.

So where do I go when there’s nowhere to go?

  • Pain Management Programme: Starting mid next week I take part in a 6 week pain management programme. Looking a psychological, social and lifestyle coping mechanisms that are designed to help you manage, or cope with, your pain. As this is mostly going to be a ‘living despite of pain’ thing it may not reduce my “felt pain” but could help me feel mentally better. Maybe. I have to be open-minded. As a raving introvert however, I have to be careful that the social aspect isn’t too draining.
  • Self-Experimentation: As with finding gloves to help with my Hand Pain, we can try things for ourselves. So we’re going to retry the TENS machine and have bought some heat-creating cream to see if that helps. We’re left ‘on our own’ by the system, pretty much.
  • Psychology Assessment: A new Psychologist is joining the Pain Management Team in November. So I am on a list to speak with him (it is a him, I’m not being presumptive) about mentally coping with increased pain. November is unlikely to be my appointment month so sometime in 2018 for that one.

What About Work?

When I was first referred to the pain clinic last August 2016, I hoped they would be able to give me framework to handle/control my pain so I could work. The reality facing me now is that even if I cope better with my pain in my current scenario, that doesn’t mean I can cope with deadlines, or expectations of a client or a boss. And even if I can feel better mentally that won’t stop my hand pain, which stops me typing all day to pay my bills.

So, I have to let go of the idea of a “normal” job now. My wife chatted with me about this. She said she would be uncomfortable for me to be self-employed or employed in something that looks like a “normal” job because that would put me in stupid pain levels. That’s not negativity, that’s facing reality.

So she has said she would much rather me try to monetise (her words)

  • Gaming
  • Blogging
  • Streaming
  • YouTube

Because my audience would be more understanding of my pain limitations than a boss or a paying client.

TL;DR – Facing a New Future

The likely result of today is that the future looks drastically different to what I hoped from even a year ago. In all likelihood my pain will increase each year. All I can do is try to be at peace with that (ha!) and focus on new things. Fibromyalgia sucks as it’s degenerative. But maybe, just maybe, I can be a positive influence in the gaming arena – and still contribute towards feeding and clothing my family.

How You Can Help

Many of you already help me…psychologically speaking. You encourage, you care, you ask how things are. Keep doing those things. Those are priority. If you want to go further, here are some ideas.

  1. Subscribe to my YouTube Channel: I do both SWTOR and LOTRO Videos, for those that are interested.
  2. Support me via a small monthly gift – if enough of you just gave $1 a month that would make a huge impact. I’m trying to re-message Patreon, so keep your eyes peeled for changes.
  3. Share my blog posts on your Social Media Channels
  4. If you’re a Streamer I will need advice to get started (and overcome my inhibitions!)
  5. If you run your own blog and would like a guest post, please let me know and we can chat over subjects/topics.

And if there’s something you could contribute I haven’t mentioned, please let me know.

Where do you go when you’ve got nowhere else to go? To your family, and to your friends and those that already support and care for you. And that’s you, if you’ve got to the bottom of this post.

For all you’ve done and said and given up to this point, thank you.

All my content will always be freely available. However, if you'd like to support myself and my family, please consider buying us a virtual coffee. Either way, thank you for visiting, I appreciate it!

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Fibro Jedi

A 30-something Shadow Jedi, married and have a small daughter. By that I mean "young", not just "short". I have a chronic pain condition called Fibromyalgia andI play LOTRO, SWTOR and FFXIV and blog about two of them. Social Media has connected me with so many people and some of those have become amazing friends too! As a hobby I am relearning drawing, which you can see on my DeviantArt profile.

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