Diagnosed With Fibromyalgia and ME – So Why Write About it?

Do You Suspect You or Someone You Know Has an Invisible Illness

Maybe you, or someone you know, has been diagnosed with fibromyalgia and/or ME.  Or suspects they have a chronic illness such as Chronic Fatigue Syndrome (CFS, CF), Myalgic Encephalomyelitis (ME) or some other invisible illness. Or maybe you just found yourself here through pure serendipity. However it happened, I’m pleased you found me. Welcome! 

Unexplained Illness, Pain, Fatigue 

A while ago I was diagnosed with Fibromyalgia and ME and I started this blog because I began to feel apart from society, different, misunderstood. I’ve indulged in more than my fair share of self-pity and, honestly, I’m done with that. Now I’m on a very determined path to understanding what’s happened to me, how I got from my old life to here! Because that is how I see it, there is my old life and my life as it is now. If I can work that out first of all, then I can start looking at ways to improve my life, help myself, and, I hope, help you all a little bit too.

In 2016, after about a year of unexplained illness, pain and extreme fatigue, a consultant diagnosed me with fibromyalgia and ME. I’d felt so ill for so long that I began to think I might have a terminal illness so boy did I feel relieved. I’ll just be able to take some tablets and it will all go away, right?

Yeah, you know it. Wrong, so wrong!

Life Before Getting Diagnosed with Fibromyalgia and ME

I am (I’m not going to say was because that is just too final) so I am a very adventurous person and driven to make something of my life. I’ve travelled a lot, lived abroad, been successful in my career.  I was also foolhardy enough to set up a business when I was 3 months pregnant with my first child.   Years later, after selling the business, I took some time off to get over the loss of my father and the breakup of my marriage. My kids needed me and I would be there, no question.

I then set up as an independent business consultant and eventually became a director of an ongoing business. My remit was to help turn the business around by increasing profits and turnover. I loved it, that kind of challenge really gets my juices flowing. Three years in and things were going great guns and then… Bam!

       ‘I had a car crash and thought I was lucky to get away with whiplash’

I had a car crash and thought I was lucky to get away with whiplash and a bad concussion. Then I started getting ill all the time, picking up everyone else’s infections and literally having to drag myself (and what felt like a 10 stone concrete block on my back) out of bed in the morning. I couldn’t think clearly, stuttered and slurred during meetings, became disorganised and snappy. My co-director asked me if I was drinking too much and maybe drinking whilst at work!

The Stressors of an Undiagnosed Illness

My family were worried.  I kept missing family do’s and get-togethers and making up excuse after excuse for not turning up for dinner at Moms, or the night out for my sister’s birthday. They knew something was wrong.  But I couldn’t tell them what was wrong, because 1) I didn’t know myself and 2) I was embarrassed by this weakness and pain that was taking over my mind and body. 

      ‘What I should have done is press the ‘HELP’ button right there and then’fibromyalgia-help

I’ve always been strong, always been a doer, an adventurer. How could I tell them that I was now bone weary tired but couldn’t sleep, that I was always in pain, that I could barely stand up long enough to feed my kids at night, or that all I wanted to do when I got up in the morning was go straight back to bed? How could I tell them when I couldn’t even admit it to myself?  What I should have done is press the ‘HELP’ button right there and then.

Instead, I started getting desperate and thinking that something was very wrong.

When Desperation Takes Over

Months went by like this. I’d been to the doctor a couple of times and had blood tests, but nothing showed up and his advice was that I was probably run down. My Doctor eventually told me to take a few weeks off work, but that’s easier said than done when you’re self-employed. I compromised and took a couple of weeks off.

      ‘Every last ounce of energy I had had been used up’

During the second week of my time away from work, the kids were at school and my sister popped around unexpectedly. She let herself in as she always does and found me in a daze at the bottom of the stairs. Every last ounce of energy I had had been used up and I couldn’t move my arms or legs. It was total, like when the battery runs out on your mobile.

I could see my sister was horrified and I was trying to tell her it’s OK, nothing serious, this happens, it passes. But I was slurring and stuttering so badly she couldn’t understand me. Inevitably she called for an ambulance and I was admitted to hospital with a suspected stroke.

Finally A Diagnosis?

When the results came back, I had not had a stroke, but I did have a chronic Vitamin D problem, (which apparently GPs do not always check) and probably had had very low levels for a while.  I have written a post about the symptoms of low Vitamin D levels and what it does to your body.  This did not explain the pain though, or the problems I was having getting and staying asleep.  Or virtually jumping out of my skin at any unexpected noise. One long night in the hospital, my legs were really restless and painful and I was having chest pains (which turned out to be costochondritis, feels like a heart attack but it’s not). I was used to this by now so I really just wanted to get through the night and, hopefully, be discharged the next day and get home to my boys and my own comfortable bed.

The next day the results of all the scans I had came back clear. Not MS, no issues with the brain, no broken bones in the neck or spine, so I was due to be discharged later that day. But the chest pain was lingering and when the nurse did a final run through of my vitals, my blood pressure was quite low and I had quite a migraine forming

Fibromyalgia Tender Points Hurt!

The nurse did not let me go me home that day; instead, a Rheumatologist came to see me.  After asking some fibromyalgia-tender-pointsquestions about my life and health the past couple of years, he started pressing various parts of my body.  It felt like torture! I didn’t know it then but there are specific fibromyalgia tender points across your body.  These tender points are painful when even gently touched if you have fibromyalgia, but not painful at all to others.  

The consultant told me that they would run some more tests but was pretty sure I had fibromyalgia and ME. Fibromyalgia was causing the pain, and many other symptoms, and ME causing the chronic fatigue.  He believed that the illnesses had been caused by the vitamin D issue and the car crash.  So there it was, I had been diagnosed with Fibromyalgia and ME. At last, I had some information and could research ways to cure this thing!

      ‘There are specific fibromyalgia tender points across your body’

Next day I went home with a little leaflet about fibro, CF, and the rheumatic system. I was none the wiser really, but at least now I had a place to start, to research, so that I could get back on track again.  This has proven to be a long and sometimes lonely road for me. Anyone who has an illness like this will understand that there is no quick fix.  You have so many bad days that sometimes you forget about the good and it has taken me a while to assimilate that, and change, not just my lifestyle, but the way I think about my life.

Thinking Ahead

Nevertheless, bad days or good, I want a better life, more energy, less pain. I want a future where I can be there for my kids, then my grandkids. And I need to find a way back to working again.  Money is tight as you can imagine, but at the minute, It’s hard to keep a clear thought in my head and just walking to the local shop leaves me exhausted and in pain.

So here I am, on this path to find ways to forge a better life for myself.  I’m prepared to try anything and everything to get there. First of all, I’ve written some posts about things I’ve already tried, starting with the medications prescribed for Fibromyalgia, like amitriptyline and duloxetine (Cymbalta). And I’ll be researching like a demon to find any cures, medical trials and new information, which I’ll share through this blog.

Peace and Love

Mojo Allen

NB – I also hope that maybe you can help me. How do you cope? I have found that writing and researching are very therapeutic, (on days when I have some energy and no brain fog), what works for you? Let me know in the comments section below, or, email me at Mojo (@) fibromyalgiame.com

Mojo

Wonder woman (...well I thought so!) to blunder woman after diagnosis of Fibromyalgia and ME

2 thoughts on “Diagnosed With Fibromyalgia and ME – So Why Write About it?

  • 28th October 2018 at 17:09
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    Hi Mojo, thanks for sharing your experience.  I suspect I have fibromyalgia.  How do I go about getting a diagnosis?  It seems many doctors don't want to investigate or believe this is a real illness.  They just want to prescribe a pain pill and shove me out the door.  I need to advocate for myself.  Where do I start?  Any advice you have would be appreciated.  Thank you!

    Reply
    • 29th October 2018 at 16:10
      Permalink

      Hi Amy.  I’m still very much working on the set up of my blog so was delighted to see your comment already.  Fibromyalgia is usually diagnosed (like ME), based on symptoms and after all other tests come back clear.  It can take so long I know, and it’s hard to get anyone to listen or understand because you can’t see this illness.  On the outside, you may look fine, but on the inside you’re suffering a bit more each day.  I was diagnosed by a rheumatologist, so it may be an idea to go back to your doctor and be very strong about needing a referral to a consultant that can rule fibromyalgia in or out.  Some of the worst times for me were before I was diagnosed.  I just couldn’t understand or control what was happening to me and 4 times my doctor asked me to come back if the symptoms were still there in a couple of months.  I became so stressed, and I’m sure that didn’t help as if you do have fibromyalgia, stress can make it a lot worse.  I don’t know your symptoms but I think you have a right to know, one way or the other, what is happening to you.  Can you recruit a family member to go to the doctor with you?  If not, maybe it’s an idea to go back and see him anyway.  I wrote down all my symptoms because I would often become tongue-tied when speaking to the doc.  At the end of the symptom list, I wrote ‘I’m getting desperate’.  These were words that I could not have said out loud.  Give it a try and let me know how you get on.  I had good support from my family, (not so much from some of my friends) and I hope you have people close to you that can help.  Feel free to write again, it may sometimes take me a couple of days to reply because…well… the fibro you know.  

      Peace and Love

      Mojo

      Reply

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