I, myself, am a sufferer. I got diagnosed last year in 2012 aged 21.
If you could please take 5 minutes out just to hear my story. It would be appreciated.
For you guys that don't know what it is. Well basically it's an illness that effects 1 in 50 people. It's a problem with the nervous system in the brain. That leads on to many different problems/ symptoms. No cute and is life long.
Main problems are: Severe fatigue (tiredness) Severe Muscle and joint pains Muscle stiffness and tightness Restless legs/jelly legs after short walks Anxiety and depression Immune dysfunction. Bowel and urination troubles Confusion and memory problems Chronic headaches Numbness to hands feet and legs Pins and needles in many parts of body And many many more
There has been found no reason for this as of yet. There is no cure. People are having to find ways of living along side this illness. Everyday is a struggle. Only doctors and specialists are using drugs as a way out. But majority of these are not working.
My story: From healthy to bed bound in a minute
I have struggled with joint pains and back pains and alot of my pain was in my shoulder. But it was getting worse.
Started to struggle at work. Was being sick before leaving for work at 5 everyday. By the time I drove into London I was exhausted. Going up ladders became a struggle. Sometimes I would go dizzy going up stairs or ladders. Lifting my tools or materials became increasingly harder. I would become confused at small jobs and mind would go blank with what needed to be done. Missing out small things. The company was questioning me after years of praising my work efforts.
I took a few weeks out to try and get myself sorted. Only to struggle even without the work. Stairs became harder to climb. Was sleeping ridiculous hours. Not had a refreshed sleep in years. All you guys that wake up feeling fresh and awake. I envy you. I wake up feeling more tired.
I drove to my dads on day and I walked into the kitchen which was only a few steps to come over with high heart rate. Uncontrolled breathing. Dizziness. Light headed. I felt like I was going to pass out.
I needed the loo. So I took the stairs only to find myself sitting down at the top. Didn't no we're I was. Felt sick. I felt like I was dyeing. Made it to the loo after my dad helping me (I'm 21!!) he then took me to accident and emergency. They stuck me straight on to an ECG. Done tests. Was worried for my health. Spent 3 days in hospital. 2 days I had a loss of use in my left arm. Had a steroid injection in the end to bring use back into it.
Doctors conclusion: Control your breathing. Thanks I'm so glad your a consultant.
Saw a rheumatologist few weeks later (still wasn't back at work properly) and he diagnosed me with this. Fibromyalgia. So I spoke to the company and said my health comes first. Have as much time off as I want and my jobs safe.
Been off nearly a year now. I've had no help from doctors. Every consultant have told me there's nothing they can do other than to refer me on further up. One doctor suggested I buy a mobility scooter to help... Great advice as I can't afford one. I'm now on a 6 month waiting list to see pain clinic.
In the mean time. I try to go gym most days ( that's all I can do in a day. I sleep before and after) I've been eating well and healthy. Keeping my sugar level up. Tried aloe Vera drink. I'm trying it all. But no major break throughs.
In the mean time I'm finding my own route in life now. Struggling every step. (Taken me 4 attempts to write this post bit by bit as I suffer numbness to hands lol)
Sorry for the long post. But I'm constantly judged one day I could feel fine the next I could be in bed not being able to move.
PEOPLE NEED TO BE MADE AWARE! Just because it can't be seen doesn't mean it's not there!
I hope people can find the time in there healthy life lol to just be cautious and aware of others!
Please read up on it. Please leave comments.
I'm not after sympathy. Just to worn others! There is so much more to this. I won't go on to much!
Thank you
2 L A T E S T R E P L I E S (Newest First)
jonnyc1988
Posted - 09/09/2013 : 17:12:07 Doesnt sound like much fun. Snakes are probably the best pet for sufferers though
Baobab
Posted - 09/09/2013 : 15:08:38 My cousin suffers with this. Not something you'd wish on your worst enemy.