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I feel... ashamed!

Dec 07, 2015 8:54 PM

I was first diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome approximately 6 years ago, but have suffered with it for over 10 years. As ridiculous as it sounds now, when I first started noticing the symptoms, I just thought I was lazy. Like I'd woken up one day and 'just couldn't be 'bothered'. But after 3 years I was starting to suffer painful intestinal pain.
I remember the Doc in her own flippant way tell me it was DEFINITELY this this time or DEFINITELY that, because we'd ruled everything else out, after being told I DEFINITELY had them.
I'll never forget the day I was told what was actually wrong with me. In fact, I almost missed it due to Doc's flippant demeanour: "it looks like ME, but most dictors don't believe in ME"
"I assume you don't?"
"No, not at all"
At that point I had to have her tell me about it and she described everything I was feeling perfectly. Initially, I was relieved. I finally had an answer, but the relief didn't last long as the penny dropped.
"You mean I've had classic symptoms of an illness I've never heard of but you have, and you never thought to mention this once in 4 years!!?"
That flare-up had me housebound for 9 months. I transferred to another GP's practice and a locum was able to instantly diagnose me, but now much else. Anti-depressants were the one and only solution. I got there, though,and, having not suffered a flare up in years, I finally felt comfortable hitting the gym again. I worked hard and, between January and August I managed to lose 7 stones.

I noticed by September I was having to start forcing myself up again in the mornings. Didn't think much of it at first, then I started skipping days at the gym. Firstly the earlier one before work, then 3 or 4 in a week to the point where I've not been near one since mid-October.
The basics of the illness haven't changed much. I over an hour to get my self out of bed, struggle to work (I'm late every day, but my boss is cool), try to keep my head held high, and get through the day as best I can, hoping no-one sees how much this affects me.
Sadly, this flare up has trumped the other one. The debilitating pain, the balance issues and crashes in BP, the brain fog, the forgetfulness and then there's the fatigue. Fatigue you just do not think is possible.
So, it was back to the GP, only to find that since my last flare up 6 years ago, ME seems to have been forgotten about: no new insights, no new medications, no lifestyle tips from my doctor. He just handed me the same anti-depressants he did last time and sent me on my way.
Yet, with every passing day I'm waking up feeling worse than I did when I ended the previous day.
I know there's people who look at me and wonder what I'm up to. 6'3, was hitting the gym every day and now I'm in agony just because I tried to use a pen.
When I think back to how hard I was working such a short time ago, I feel weak, pathetic and ashamed of my body for letting me down

I don't know where to go to ask for advice.
Does anybody tell me how they manage flare ups? Are their dietary advice that can help manage this?
I can accept never going to the gym again, but to have your chest burning with exhaustion because you've walked ten steps for a piss is a bit much

Thank you in advance

Dec 08, 2015 12:13 AM

First off,just want to say welcome, and no, this pain isn't your fault. I know it feels like you're lazy sometimes, but as my dad explained is basically the reverse of putting, your body is reacting completely honestly to everything that happens.

I personally use walks, DMSO, and a 7 minute workout to manage a lot of my pain, and stay mobile. I also usually ally get more stressed out in winter, so exercise can sometimes help to distract from stress.

Other than that, just experiment and find out what works for your body. Good luck!

Dec 08, 2015 12:41 AM

Have you tried using a Tens unit? It hrlps with my chronic pain. Slso i use my heating pad a lot. Another thing is i drink lots of ginger tea and it helps tremendously with gut pains but i notice that it seems to help my joint pains too when i drink it more often.
Hot showers are my friend, even if i dont clean myself and i just let the hot water work to relieve my aches and pains. I have a seat in my shower that really helps.
Don't be ashamed or afraid of mobility aids. Sometimes i don't need any, sometimes i need a cane and sometimes i use my rollator.

Dec 08, 2015 6:08 AM

Hi guys,
Thank you both for getting back to me.
I've not tried a great deal as I've pretty much gone into this blind with no real support or advice. I don't normally look to the Internet for solutions as everything will have you in a box before you've finished reading the senytence.

The only thing I've found that manages the fatigue, the certainly not enough to do any exercise in my case, is effervescent vitamin C tablets. Spoke to the doc who, after Googling, said staying under 10,000mg should be fine, so I try to hit 8,000mg maximum
Warm showers, baths or heat pads are amazing for either getting you through the day or making you feel better at the end of the day.

This particular flare-up is unlike any I've had before or seen in my limited time looking to others and their illness.
The fatigue and the pain are hellish, but at 5am I was watching a small box move around the room.
It wasn't, of course, and I was fairly sure I knew it wasn't but I still sat in bed watching g it for 3 hours. Then I somehow became convinced that I had a cats nose.
I would have thought these unusual symptoms to be symptomatic of something else (flu, viral infection, UTI) but I felt I've been able to track their process from amid headache, to thick brain fog, immeasurable forgetfulness and unimaginable frustration.
Have either of you experienced anything like this, or know of anyone who has?
Cognituve impairment in a mild form during a flare up is par for the course, but I can't even begin to describe how surreal a moment it was

Thank you both for your help

Dec 09, 2015 9:04 AM

I suffer from pretty bad anxiety attacks that can involve all sorts of symptoms. I've stared at my own reflection before intellectually knowing that was my reflection but at the same time not recognizing the image in the mirror as me. I sometimes have alice in wonderland symptoms where vehicles on the road look like hotwheels cars. Brains are very strange.

Dec 10, 2015 1:59 AM

Very strange indeed.
The mild visual effects stayed with me most of the day, thankfully not enough to impact me.
I always felt I'd be 100% if I was seeing something I shouldn't be, but because I wasn't on any medication and knew I didn't have anything like the flu, doubts were creeping in. The rest of the day, I just kept catching glimpses of cats jumping off things in the corner of my eye.
No sign of anything since I woke up from a 'nap' (which, instead of lasting the 40 mins I intended to go to the docs, lasted 15 hours), so that will probably be the end of that little quirk

Dec 12, 2015 6:30 PM

Seems the vision thing was a one off. I've pretty much levelled out at manageable pain, unmanageable fatigue and chronic sleeping bouts of between 12 and 15 hours a day, though I feel like I've not slept in weeks

Dec 13, 2015 5:02 AM

That sounds like typical fibro. I went shopping yesterday for a few things and i didn't use a store wheelchair because it was so crowded. I feel pretty much useless now. Glad your vision is "improved" now.

Dec 13, 2015 12:35 PM

I've been told I have ME/CFS and not Fibro.
What are the links or differences?

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