CFS and me

In 2004/2005 I had a time of immense stress,upset and ill health.

I was pregnant with my second child,My father became ill and was later diagnosed with a brain tumour and shortly after the birth of my Daughter in the August I began to suffer the most horrendous pain which was later diagnosed as Gall Stones.

So I had a dying father ,ill health,and a newborn baby who was ill herself.

In January 2005 my father passed away. It had been 6 months since he became ill.

My Daughter was diagnosed with reflux,after continually dropping weight and suspected Cystic Fibrosis

I had an operation to remove my Gall Bladder around June time.

After that my body stopped working properly.

The slightest thing seemed to wear me out,I remember walking to the post office 5 minutes away then coming home and having to sleep for two hours because it had exhausted me so much.

I was so tired,but some nights I couldn’t sleep and any sleep I did have was not refreshing.

I had headaches,muscle aches,clicky joints,palpitations,stomach cramps,dizzy spells,difficulty concentrating,panic attacks,sinus problems,sometimes I mispronounced words or struggled to find the right words to use. I just felt so ill!

The doctors were not much help and were quick to assume that I had depression,even though I told them I hadn’t.

In 2011 I suffered I had two ocular migraines in a week-it was scary and I honestly thought I was having a stroke.

In late 2011 I was diagnosed with Gastro Oesophageal Reflux Disease and given medication to control it.

In early 2012 things seemed to come to a head,I was sat at home one evening and I experienced two sharp shooting pains down my left arm then immediately after pins and needles. They did not go away so after an hour my Husband took me to the local minor injury unit. The GP there examined me and noticed I could not keep my arm up,also my blood pressure was extremely high. I was sent to the nearest hospital and spent most of the night in A&E wired up to machines. I was put on to the ward around 3am and then discharged the next day with a verdict of migraine.

The feeling in my arm to two days to return and it still feels weak now.

It was at this point,and if I’m honest out of desperation (and to much time on my hands as I was signed off work for a month) that I did what everyone tells you not to and Googled my symptoms.

I came across a page about ME/CFS and it was like reading about myself.

Armed with this new information I saw my GP again and suggested it to him,he agreed that it did sound like CFS and he was happy to refer me to my local Hospital where they have a speciality clinic for it.

I had to have blood tests and an MRI to rule out any underlying conditions.

But finally I had a name to put to the thing that had been blighting my life for so many years.

I have had to reduce my hours at work (on the advice of the Doctors),I’ve had more energy but we’ve had less money. My health is more important though and if I have a bad night I know I can rest the next day while the girls are at school.

I have good days and bad days,sometimes I have a month when I feel great then I wake up one day feeling as though I’ve been run over and it starts again. I’ve got to know my limits. I can still go walking (something which we enjoy as a family) but I take it steady and know I will probably pay for it the next day.

I count myself lucky,some CFS sufferers are so ill they are unable to work or even get out of bed and may have to use a wheelchair.

I have to go to the clinic 6 monthly which is good as they can keep a check on how I’m doing.

I will not get better,and there is no cure.

It’s hard as there is no visible illness and I feel as though people just think I’m lazy or it’s all in my head. I’d like them to try a week in my shoes!

It’s hard but I stay strong,my kids and family keep me going and one day I hope to beat it completely.


4 thoughts on “CFS and me

  1. This was really interesting to read. I have been suffering for a long time now with all of the symptoms that you have described. My mother has fibromyalgia so I just presumed that I have the same. From reading this though the symptoms seem to be very similar for CFS and fibro. I have given up with doctors now they don’t seem to have a clue. I’m glad that you got an answer, it must help to know what is wrong. (Sorry about the long comment) x

  2. Hi Gina ,Thanks for your comment ๐Ÿ™‚ Is Fibro hereditary? I think the symptoms are very similar between the two , I would see a different Doctor. Don’t suffer as long as I did!

  3. Oh my goodness, darling. This is so so similar to what Rob has been through, it’s scary. His also came on during a really stressful time in our lives, I guess in hindsight all that pressure just caused something to break, ya know? Or left him open to viruses etc that can be the start of all this. We’re still in the messy kind of think it’s ME, but could be something else stage – do you know in the 3 yrs he’s been ill he’s not had one blood test?! It’s really, really scary at times, I just don’t know what to do or how to help. There was an awful period when we were getting no help at all, all we had was google and we convincing ourselves that whatever it was was fatal or hereditary. He also gets the shooting pains in his left arm, pins and needles, pains in his chest, I quite often panic that he’s having a heart attack. At least we know sort of know what it is, the medication kind of helps with the pain sometimes and it’s just a learning process to see what helps and what doesn’t. At the moment he’s at a total with his treatment because he keeps getting terrible colds. Ugh. It’s so exhausting and I’m just watching it, I don’t even have it so my heart is totally with you missus. If it’s anything you can always email me if you want someone to chat to Loads of love dude, considering all the shit you’ve been through you sound like you’re shoving two fingers up to ME ๐Ÿ™‚ xxx

  4. Another one waiting for a diagnosis…had a brain scan last week and get results next week but currently considered to have vestibular migraine. I thought migraines come and go though and I have symptoms to some degree every day ๐Ÿ˜ฆ
    Haven’t had any blood tests either as it’s presumed my recurrent dizzy spells and tinnitus are connected to having Labyrinthitis last year. Menieres Disease was considered but my hearing test was normal.
    All I know is work is really hard if I feel safe enough to drive to get there, the newest symptom is numbness and pins and needles suddenly occurring. The dog goes without more walks than is fair and I need more sleep than is normal. Stairs are hard but I get motion sickness in lifts…
    I cant actually remember a day where I didn’t have a headache or brain fog but I have to go to work as I’m on my own and until somebody can tell me what’s actually wrong with me I’m a bit stuffed aren’t I?! It’s true there’s always someone worse off but I wish I could just put a name to what I have as I know when I stumble around in public I must look drunk!
    What the heck is making us all poorly? My cousin has similar but her useless doctor just said he didn’t know what it was exactly but expected it to get worse!
    Sorry for the ramble but it’s sort of nice to find people that understand the frustrations of invisible illness x

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