My name is Charlene and I suffer from Fibromyalgia and I was diagnosed on the 25/01/2017.
I had not even heard of this illness before so I researched into this illness and I still research this illness today as things change all the time and new information is always available as they find new things out on a daily basis. My mother had rheumatoid arthritis from her mid 30’s up until her death in 2012 and my research has found that my mother’s illness is a related illness to what I have which I found interesting. I am in constant pain throughout my whole body I have muscle tightness, stiffness and spasms which is quite uncomfortable. I have trouble sleeping most of the time and wake up really hot and have irritable feet and have to put my feet into cold water to cool them down as my feet feel like they are on fire. This is due to my body cannot regulate my body temperature properly which is most common in this illness.
I also suffer from depression as this is also linked to fibromyalgia and I also have what they call fibro fog which is confusion or forgetfulness. I may look like I am ok and have nothing wrong with me but this illness is one of the invisible disability’s and I suffer a great deal with it especially in the cold or rainy weather as it is these times when I am in the most pain and also have problems walking and have to use churches to be able to get about. There is no known cure for this illness and all the GP’S can do is try to maintain the symptoms by giving you pain medication, antidepressants, muscle relaxants, anticonvulsants and antipsychotics medication but as with all medication there are side effects and some of them are not very nice like dizziness, sickness, dry mouth, irritableness, tremors, weight gain, constipation, diarrhoea and swelling of the hands and feet. Some of the medication may not work for many people as I have found this out myself as I have tried all pain medication and it does not help with the pain I am in on a constant basis so I have found that the only thing that helps me is heat pads or being in a warm room or the nice hot weather. I cannot walk long distances as I get really bad back pain and have to sit down till the pain has subsided and then I can start walking again so exercise, in general, is advised but doing the exercise is quite difficult but the GP always advises you to them to walk and go swimming and other easy exercises as this is supposed to help people with fibromyalgia but I advise you to do what you feel you can do for yourself and do not push yourself as you will be in a very bad amount of pain the following few days.
Even doing the housework is difficult and I have to take a break after each individual job around the house because otherwise I can’t move or do anything the following day due to the amount of pain that I am in due to overdoing it the day before.
I am also having problems with getting in and out of the bath and have to have someone help me to get into and out of the bath due to me falling as I get in and out of the bath as my wrists give way on me and I can no longer hold my own body weight due to this problem. People who suffer from fibromyalgia are classed as disabled as this illness only gets worse and not better as it is an illness of the nervous system due to our brains not making enough serotonin, noradrenaline and dopamine in their brains which carries the signals from the brain to the nervous system and the doctors believe this is why we have widespread pain throughout our bodies.
My name is Helen Lawley, I was diagnosed with fibromyalgia 12 months ago after other long term life changing illness which may have been the trigger for this condition.
Fibromyalgia is not an easy condition to get a diagnosis for and it has taken me 3 years to get doctors to actually define it and get any type of treatment. However, I was always a sickly child in and out of the hospital with Asthma attacks and other things most my life and looking back I may have had this condition since I was a teenager. It affects me in many different ways but mostly I have had a constant headache since 2011 and I have migraines on top of these headaches, then I started having different sensations and pain in my hands and lower legs when walking then my toes which is more of hindrance, I am also sensitive to cold temperatures as instead of sensing cold I sense pain instead. I am in a state of constant fatigue which feels more like the worse hangover you have ever felt or flu. I get dizzy and confused I have also swapped words without knowing when I’m talking to someone often people confuse me for being drunk (I don’t drink).
I wake up feeling unrested and It can take up to 20 minutes just to get out of bed due to stiffness and dizziness I have to rely a lot on my husband and my grown children to help me up and on my worse days I can’t even get out of bed due to the level of pain I feel, which makes me feel useless and I know people rely on me also and I hate letting people down, but I also know that the people that care also understand.
Last year I really felt I had to give myself a kick up since losing my job in 2014 I really needed to feel that I could do something and that I could give back to society rather than be a drain on it. I joined my doctors Patient participation group as they needed someone who could maintain the social media and I.T side of things and I became an information champion and ran a drop in for people to get information on health conditions or benefits etc. then I wanted to get back into work but felt that no employer in the right mind would employ me knowing I would probably only be in work half the time. So I started looking into things I enjoyed doing, what my hobbies were and I eventually enrolled back at college after a 10-year gap. I’m now doing light vehicle maintenance here at Dudley college and I’m in my 2nd year and hoping to do level 3 next year. I’m grateful that the college is so understanding with my condition and understand my limitations and my determination to get through them and overcome them on a daily basis.