Saturday, 14 February 2015

Chronic Fatigue Syndrome

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That ^^ is my cats contribution to this blog! The little shit deleted a different blog a few weeks ago too by walking all over the keyboard. He got promptly shooed away but the other fella is sneaking up on me now....





I had an entire blog written out about Chronic Fatigue Syndrome and i just deleted it by accident. I even sent it to myself in gmail and deleted that too and because I'm so ocd about deleting my trash its completely gone so here it goes. again....

A few days ago it was announced that Chronic Fatigue Syndrome was getting a 'rebranding' It is now going to be called "Systemic Exertion Intolerance Disease"
At first when i saw the headline and read the first part i was rolling my eyes and thinking 'instead of re branding existing illnesses why not work on a cure? But the more i read it the more it made sense. It isn't just a simple re branding,its more to do with making it better known and easier to diagnose. Its crazy but put 'disease' at the end of any condition and doctors take it more seriously.  I have both chronic fatigue and Fibromyalgia. I was diagnosed with fibro first then a few months later with CFS. My doctor at the time wasn't very helpful. In fact when i questioned her about having CFS too , seeing that both are very similar, she asked me coldly 'and where did you get your medical degree from'  I wasn't questioning her personally but i didn't want to start taken more medication if i didn't need it. It is what i was up against at the very beginning.

Chronic Fatigue Syndrome is extremely difficult to diagnose. There are no tests for it, and other illnesses can cause similar symptoms. Often your GP has to run through other illnesses which means you have to go for a multitude of blood tests, xrays, scans etc. This can take years. As it was in my case. I start having problems with energy from around the age of 24/25. I had just moved out of Dublin to Drogheda and has a daily commute Mon to Fri which i had to be up at 5am and didn't get home until 5.30/6pm. At the time i was putting it down to that and i was going to have to get used to it. But after 9 months i just couldn't hack it anymore and ended up quitting my job. I have never quit a job without having another to go to so it made me go to the doctor to see what was wrong with me. Blood tests would always come back fine so it was frustrating. My then doctor was trying to say it was because i wasn't working and even when i explained i was like that while i worked she just passed it off. I got a new job soon after and while i was happy to be back working i was dreading it. I was in that job for nearly 5 years and each day was a struggle. Id come home shattered every day. I had no energy on my days off and often just tried to recover. In the meantime doctors kept telling me to take a tonic and get more exercise. I was quite fit and healthy and often felt like a hypochondriac going to to doctor.

A few years back i dislocated my knee. It was just a freak accident while doing housework. (a good excuse not to do it haha) Ive never really had a serious injury such a a break or anything so it sort of freaked me out a bit. In the couple of years leading up to that the fatigue was overwhelming. I had moved to a new place in Drogheda  so we were still unpacking as we both worked full time. Id get up in the mornings and get ready, then i would sit for about 20 minutes most mornings in tears at the thoughts of working until 6 or 7pm. I was just beyond tired and my concentration was shot. This wasn't a tiredness like when you feel sleepy. This was pure body tiredness. It was a struggle putting one foot in front of the other. A quick run up the stairs would leave me wrecked.  Id go to bed at night and just couldn't sleep, managing only about 3 hours. I took weeks off as holidays just to rest. only to go back just as bad. Then my knee went. I started physio in the hospital about 4 weeks later and it was a nightmare. I had physio before in a different hospital in Dublin and had a pretty bad time of it. I had badly hurt my back in work one day and was off work for 3 months. The physio in the hospital was horrible. A real bitch. I was aware physio could hurt to a degree especially at the start but this was awful. I would come out in agony rather than feeling a small bit of relief and one day as i got outside my back just went. i had to sit down outside in the rain until my back sort of just popped back.. I just stopped going as that had been the 8th week and nothing was improving. With my knee, it was even worse. I was told by the doctor that i had to stay in bed for 4 weeks and keep my leg straight. Because of this my leg wouldn't bend after the brace came off. The physio was in a bad mood that day. She kept snapping at me and told me in a mocking tone that she dislocated her knee before and was up walking the next day. She then tried to put me on an exercise bike and tried to get my leg to bend . She kept shouting at me for not doing it and it was only when i actually screamed in pain as she tried to force my leg back that she stopped. Over about 4 weeks she just got worse. I was physically throwing up before every session and shaking like a leaf going in. The fatigue was quite bad too but again i put it down to the injury. Shortly after i just stopped going. The fear was unreal. I decided to go private after that. It was a few weeks before i had the courage to do so however. But i just decided if the physio was no good , id just move onto a different one.

I found a brilliant physio first time round and the difference was unreal. I remember i was so scared going back into it but the way i was treated was so different and much kinder.  Quite literally, after the first session my fears had gone. The clinic was called http://www.northeastphysio.com/ and John Maguire was my physio. I'm sure he was sick of the sight of me as i was going for nearly 2 years to get my knee sorted but it wouldn't have taken so long if i had known what was actually wrong with my re: CFS and Fibro. It was inadvertly through John that i got diagnosed finally. After he sorted my knee i thought id get my back sorted once and for all. He assured me it would take about 6 weeks and i was happy enough. Unfortunately after about 4 the inflammation was still bad so he suggested i get tested for arthritis so he wasnt treating me for the wrong thing. So i got tested for R.A among other things. While i was waiting the results i had come across Fibromyaglia and could identify with that so much more than anything else i was getting tested for. I think out of the main 15 symptoms i ticked 14 , with a further 10 more rare symptoms i ticked 8. So when my results came back fine, i asked my doctor about fibro and she agreed to send me to a rhuematologist for tests. This again took 6 months but finally i had a diagnosis. She told me i had textbook fibro even before she did the various stress tests on my body. She then said she wanted to see me again in a few weeks to test for CFS also.

There is no real way of determining CFS, no blood tests or scans will show it so it is so hard to get a diagnosis. But under this new Rebranding they have set guidelines for GPs and Rhuematogists to determine whether a person is likely to be suffering with CFS They are

(1) Impaired ability to engage in pre-illness levels of activities that persists for more than six months and is accompanied by often-profound fatigue. 

(2) A worsening of these symptoms after any type of exertion, including physical or mental exercises or emotional stress.

(3) Sleep that does not alleviate fatigue.

To diagnose someone with chronic fatigue syndrome, a physician also must find the person is suffering from one of two additional problems:

(1) Impaired ability to think.

(2) The inability to remain upright, with symptoms that improve when lying down.

A diagnosis also depends on these symptoms persisting for at least six months, and they must present at least half the time with moderate to severe intensity. In 2014, doctors linked chronic fatigue syndrome to inflammation of the nerve cells of the brain, and some now believe people with the syndrome are fatigued because something has gone wrong with their immune response. I was put on various medications and i cant take anti inflammatory meds at all as they make me violently ill. I tried quite a few and they either left me like a zombie or just did nothing at all. The one I'm taking now, Ixperim is the only one that's helped in any way. I do use cannabis to treat it too but i only use it when the flare ups are really bad. I tend to get electric shocks, excruciating headaches, pains in my upper body mostly but all over generally,  i cant walk properly or bend my limbs, i can barely talk or keep my eyes open, though i don't sleep. I just find it tiring to keep my eyes open. Bright lights, smells send my sensory system into overdrive and i often feel nauseous. I cant eat during these times and cant get out of bed. Thankfully it lasts only a day or 2 but this can happen every 10 days. The longest it went on for was 6 weeks. Its hard for me because i am a naturally active person. I always kept fit and was always cycling, skating, climbing etc. The lack of energy and pure exhaustion took its toll on me and i have only recently come out of a deep depression. It lasted nearly 2 years and i still don't know how i came out of it to this day. I've had relapses with it but for the last 3 months i feel more like myself. These 2 conditions are so hard to deal with and its natural to get down. Ive always set high standards for myself, in school, college or work so to develop something like this was heartbreaking. But i like to think I'm getting on top of it now. I have a renewed interest in my hobbies again and i got 2 kittens 7 months ago so at least now i can take my mind of the flares again.  In fact I'm hoping to see my physio soon to maybe set myself an exercise programme to get fit again . I was supposed to do that last year but the depression was so bad i just couldn't do it.

Awareness of this condition is still lacking however but hopefully in time it wont be the case. Its as much about getting quality information and help as the actual diagnosis. I was pretty much told 'this is what you have, have a leaflet and take these meds' and that was it.  I suffered for nearly 10 years before getting an answer to what was wrong with me. Its been a frustrating, painful and often lonely path and  I hope in the future others don't have to go that long and suffer in the way i did.