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.


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14 thoughts on “Fibromyalgia – Where Do You Go When There’s Nowhere to Go?

  1. I’m in a similar situation, because my doctors said they could not make anything more for me. But they aren’t giving me a programme or somewhere to go, they just gave me a website, “living with pain.com” or similar and that’s it. I do concentration exercise everyday, and I changed my diet drastically to be able to work 5 hours a day. When I return home, the way from the bus to the door of my house feels like forever. I wanted to lie near a tree today, the pain was so strong. When I have that, I concentrate again. I’be been doing this for a year. I have no idea if I’ll be able to stand for another year, but right now I do it. I’m lucky because my work is about social media and website management, and my bosses are very sensitive about my issues with pain.

    Where do you go when there’s nowhere to go? Family. You are so right about that. Your beloved ones, and the people around you. This was a very good read, really. Thanks for sharing, you know you have my encouragement and cheering.

    1. Thank you Zimnel – and your fight sounds similar to my last year of working. I was doing coding and search marketing but I was running my own business (and employing others right up to the end). Clients who pay have a right to expect certain things that bosses are more flexible on. I could probably do Twitter management but that would need a lot of typing all day…and measurable results so again I can’t really look at that.

      Thank you for your encouragement and cheering πŸ™‚

  2. Not unexpected news but still completely terrible πŸ™

    I keep thinking about the article I read a few months ago, by a scientist (or at least someone with a science background; the details are fuzzy now) who basically contended that pain is emotional and subjective rather than a physical state. His thesis was that babies (and by extension, animals) can’t feel pain “as we understand it” because they’re emotionally undeveloped (or, in the case of animals, have no emotions). I disagreed with everything he said–most emphatically that babies, young children, and/or animals don’t feel emotion (?!).

    This insight into the medical/scientific view makes me wonder, though, if fibromyalgia gets so shorted in research and treatment because somehow they just don’t “believe in pain.” What little exposure I’ve had to the fibro community has just demonstrated to me, over and over, general indifference from medical professionals.

    Here’s hoping these “topical” remedies, like the TENS or maybe essential oils (I use a cream called Deep Blue that has changed my life, but my pains are muscle/joint and not nerve, so not sure if it’d help you), are able to bring you relief. And hopefully you get benefit from the other treatments, but I hope you won’t hesitate to abandon the program if the strain outweighs the benefit!

    You’re an inspiring guy, so don’t ever feel like you’re not contributing to the world πŸ™‚ Feeling guilty at not being able to work shows you have character, but don’t let it run away with you! You’re doing good things just as you are.

    1. Thanks Megan, that means a lot.

      On the babies-and-pain issue, NJ felt pain – and I think to a *greater* degree because they just hurt and don’t understand why. At least when I hurt I know why, which does make a difference.

      I think in my case, the official line is that Fibromyalgia patients are best managing it themselves. But most of us don’t have enough knowledge to know how to do that. Which is why I’m usually in what I call “survival mode”. Surviving is not Pain Management, it just means it-hasn’t-killed-you-yet.

      As for the Programme, I have to complete it because some of my State support depends on me showing willing to go through what I am advised. Another Catch-22.

      But thank you for your encouragement, I may need more reminders that “I’m doing enough” as the next few weeks unfold. Bless you.

  3. Oh no, that must be so discouraging. Your wife has the right of it though – no point in beating yourself up just for the sake of it, though I understand how frustrating it must be if you just want to work and feel productive.

    You definitely shouldn’t feel like you’re not doing anything though! You’ve already done a lot to raise awareness of Fibromyalgia for example – heck, I’d never heard of it before I started following you, and just think of all the people you reached with your podcast appearances.

    An acquaintance linked an article on Facebook the other day about how Fibro might actually be caused by excess blood vessels (I tried to include the link but that caused your site to reject my comment) and it caught my attention since I now know what Fibro is! Sadly it didn’t seem very well sourced, so who knows how much truth there is to it. However, people are certainly trying. I reckon that’s also why you were prescribed that 99% failure rate medication: because the doctors also don’t like being unable to help either, and seeing if you’re maybe one of the 1% probably seemed better than doing nothing.

    Hang in there!

    1. Thanks Shintar – and yeah I had to stop people posting links in comments because of the amount of spam I was getting. But I know the article – it’s not well sourced, it actually dates back several years and the author keeps resetting the published date so it looks recent. Fibro has multiple possible causes which is why it’s complicated!

      Thank you for your encouragement re: Awareness raising etc, I do neeed people to remind me I’m doing something. Maybe acknowledging that a ‘normal’ job is not something I can do any more, I will see what I do here and elsewhere online can help me to feel productive πŸ™‚

      Thank you for your support, it’s really appreciated!

  4. Big hugs from all the way over here. From the way you’ve written this, it seems the news wasn’t exactly unexpected. I’m not going to leave you anytime soon – you’re a great boost to me when I’m down, so I’m going to repay the favour at every chance I can get. You’re an amazing human being, and never forget it. I’ll start supporting you as soon as I’ve got surplas for me… Keep on it, you’re amazing!!!

  5. So sorry the doctors were unable to help you. I have fibromyalgia as well and have also found that we’re better off managing it on our own. Have you heard of the Paleo diet? It focuses on nutrient-dense food and eliminates foods that cause inflammation, and many people with all kinds of chronic illnesses find that it helps decrease their symptoms. It’s not a cure by any means, but it has definitely helped me. I have what I call a “default” pain level, which is the all-over pain that never goes away (and separate from more localized, intense pain like in my back or neck), and over the last few years a paleo diet has helped me get my default pain level down from a 6 to a 2. It doesn’t have much of a direct effect on the more localized pain, but it gives me a lot more energy to exercise, which does keep the localized pain under control most of the time. Food is far from the only tool I use to manage my pain, but it is what has the largest impact. Just thought I would pass the information along in case it’s something you haven’t tried yet, and if you want more info I would be happy to help!

    1. Hi Sara, I haven’t heard of it but there’s no harm in me researching it. I have cut down on gluten a lot in my diet, which I discovered via experimentation can cause a flare if I eat a huge amount in one go. I’ll look into it. My default is easily 5 or 6 as a normal pain level, but that can fluctuate to an 8 at points in the day. But my default is also localised – hands, shoulders and neck almost always hurt. Just have to keep trying things I guess.

  6. Thinking of you every day as I struggle through my own pain, meds-free because, basically, nothing works and who wants to be a zombie anyway? They tell us over and over again that sleep is vital, but I can never get more than a couple of hours at a time before the pain wakes me again. It’s a vicious cycle. What’s really maddening is the unpredictability. Doing the same activity on different days can either be completely innocuous or lay me out like I’ve been run over by a dump truck. I think that has to be part of what makes fibro so difficult to research. It’s invisible, unquantifiable and essentially unreproducible. Even if they can’t fix it, though, I think I’d feel better if I just understood why it happens. What causes all this pain and why does it progressively worsen? How long will I be able to work at the job I love? When will gaming be the final social activity I have to eliminate? Meh. No wonder sleep is so elusive. Anyway, thank you for the forum, FibroJedi, and keep up the good fight. Raising awareness is so very important. I’ll do what I can to support you–so glad to have you in our Crickhollow community. *gentle hug*

    1. *hugs* thanks Biblio. I think the only reason I sleep is because of the meds I have at night, but if I’m in a really bad flare I can still wake in the middle of the night. I had to give up work I enjoyed late last year, and Church is the only social thing I can manage in a week. Everything else is too much physical and emotional energy.

      Exertion usually wipes me out – so I do housework because I have to – my wife does two part time jobs and looks after our wee one most of the time so if cleaning is going to happen I do it. But it usually knocks me out that day and renders me almost useless the next day. But what’s the alternative? To let the house get dirty and cluttered, which will stop me from relaxing at all.

      I think even though you’re meds-free, getting something (even if it’s through natural remedies) to help with the quantity of sleep you get may be wise. I can’t fix sleep quality because that’s an issue I can never solve for myself. But look after you and thanks for having me on Crickhollow even if it’s just once or twice a week that you see me.

  7. Hi FJ sorry to hear about your troubles with the doctors and pain relief, but I agree with your wife the only sensible way you can make living is being self-employed and working when you can and hopefully you can make all the things you wish to try to cover your expenses. My wife as you know has fibro as well and she is currently in the process of being laid off from her job she loves as she is no longer able to do the commute and do the job.

    Like she said to her boss if they could let her work from home doing the hours she could each day she was able she would be still in employment but basically she is waiting on HR to do the paperwork to finish her on ill health. She too is looking to find some way of working from home when she is able.

    Blogging and crafting are where she is trying at the moment. I just hope she is able to keep this up as she does not have much of a social life these days has she had to give up singing in the church choir, as she needed the entire weekend to recover to be able to get into work on Monday’s. Sorry for the rambling post.

    Michael

    1. Hiya Michael,

      Thanks for taking the time to reply – nothing to apologise for. My employment situation before NJ was born was complicated. I was a co-manager of my own company with employees. That sounds flexible, but workload dictated I had to be full-time. Once NJ was born my health just crashed completely so I had to step back and we were effectively forced to close.

      Now ‘self employment’ looks different again. Your wife has blogging and crafting, I have blogging/gaming/streaming. Both your wife’s abilities and mine can be done…whenever, which can be releasing. I’ve nearly adjusted my mindset over life goals. It’s just taken me a while to know there’s no shame in taking another detour in life.

      I also don’t have much of a social life offline. I preach at church once a month and attend church one other weekend a month, but getting every week is nearly impossible. Sad to hear your wife had to give up the choir though, Fibro seems to be a condition that mostly just takes from you. Hats off to you (and to my wife too) for being the strong life partner, I know that’s not an easy calling!

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