ME or not ME, that is the question

ME or not ME, that is the question

Could is be Chronic Fatigue Syndrome and is it related to Coeliac, lets see.
It is really strange how you can go from rarely being ill, to spending at least three quarters of a year sick. In the last three months I have been in hospital twice, in the last year I have been in three times, before January I had only ever been in the hospital to go to accident and emergencies with minor problems.

The lastest trip to the hospital resulted in me being hooked up to some medication for the night and let out at 3am. I was sick for a couple of days with stomach pain worse than normal (I seem to constantly have stomach pain of some description these days) but managed to go to work however depite being at a desk all day I was so ridiculously fatigued you'd have thought I was working as a personal trainer or something I struggled to stay awake so much. After a day and half the pain seemed to ease "finally it's easing" I thought, I couldn't have been wronger. Looking back, I don't know how I got home from work, I can barely remember the drive home, in the whole 40 minute drive all I can remember is getting a really sharp pain in my right hip/lower stomach and being in agony. I can't remember arriving home, I do remember walking in the door and half collapsing on my Mum.

My Mum and Dad took me straight up to the hospital, after a 3 hour wait I finally saw a doctor, I was never examined, he automatically decided that because 6 weeks before (when I was admitted last time) an ultrasound had picked up a cyst on my ovary that it must be that since, like last time, it fell in time with my "time of the month" it was too coincidental not to be. He ran some blood tests (all came back fine),and hooked me up to an IV to take the pain level down, he didn't send me for another scan as I was already booked in to have one as an outpatient three days later.

Seven hours after going up the hospital and seeing countless people on trolleys and wheelchairs lining the corridors, I was let go with a little less pain that I went with. The next day I slept with pretty much 17 hours, yet I was still tired. And even 4 days later I am STILL tired.

Since doctors weren't giving me any answers I took to my best friends, the WebMD and Google. Yes, I know you're not suppose to self diagnose but since no one else seems to be doing anything. My first thought was Fibromyaglia due to the pains I sometimes get in my muscles, the constant hip and knee pains I get, plus it would line up with the intense pain at certain times of the month as it can increase menstrual pains, but on the other hand when asking around I don't get as much pain as would be expected, so I eventually decided that doesn't fit well enough even though it does seem to be fairly common with Coeliac's.

After asking around a bit more and researching an illness called Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME) stood out to me. Coeliac is often misdiagnosed as being ME as it can display gastrointestinal symptoms and IBS, it is important that Coeliac is tested for before ME is diagnosed, however it is also becoming increasing common to have ME alongside Coeliac.

I've been suffering with the tiredness for months but never thought it could actually be an illness itself rather than a symptom of something else. When I came across ME, I looked down the symptoms on a blog post and on WebMD and was suprised by just how similar they were to how I feel a lot: -
  • Extreme physical and/or mental fatigue - tell me about it, i get so tired I can't stand some days, and I get so mentally tired I actually feel like I am going mental some days
  • Feeling unwell after being active - some days I only have to go for a short walk and I feel ill
  • Sleep problems - some nights i'm fine others I'm all over the place sleep wise
  • Muscle pain/Joint pain - At least once every few days I get pain in my hips and knees
  • Headaches - yes, been getting those a fair bit lately too
  • Concentration problems, memory problems - Ironically discussing this with my Mum the other day, I have a memory of a goldfish these days (sorry for any possible to insults to goldfish there)
  • Sensitive to noise, light or emotions - Pain in the bum when you have to look away from your computer cos the of the light when you work on computers...and emotions, I only read about the Glasgow bin lorry incident and filled up
  • Muscle weekness/coordination issues - a symptom I don't have!
  • Lightheadedness/dizziness - umm, yep
  • Frequent urination, nausea, IBS, gastrointestinal issues - yes, oh yes, yep and definitely
  • Low body temperature - I am always cold, especially my feet
  • Feeling worse under stress - Definitely, more pressure on me worse I get
  • Depression - Badly, I get it bad

Without talking to my GP about it I can't say for definite but with almost all the symptoms falling perfectly, can it really be coincidence? Is what I have been suffering ME? Or am I being my own worst nightmare by googling what could be wrong with me? From the facts found, I know its common with Coeliac's, Coeliac itself can actually bring it on as stressful events, viral illnesses or traumatic events can trigger it and I almost definitley have all the symptoms most common with it. Now I just need to get a medical diagnosis to say if it really is this. Maybe after all these months I have found a cause, I can only hope I have actually found an answer.

Your Comments

Hi there, it's soooo interesting reding your blog as im have had something similar happen to me! I was diagnosed with the ceoliac condition 24 years ago (I am 48 now) then under active thyroid. All was good and these conditions were under control until 4 years ago when I went down with a bang, I believe I had the flu virus so was laid up expecting to feel bad for a couple of weeks, but then the fatigue crept, and I was eventually after 2 mo the taken into hospital to b told that I had has a nasty virus (of course) and was left with chronic fatigue, I now have to have the B12 injection every 3 months also! 4 years later and I have come through the worse, I still get days where I just have to go to bed, but the fatigue is manageable now. I would be interested to near of any other ceoliacs have had similar circumstances to us! Regards Hayley

Hayley - 28th January 2015

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