so i haven't posted in a long time, if you've read my last post then you know what was happening in my life over the last few months.
December 3rd 2017 I lost my best friend, my mam to complications of stage 4 brain tumour and the treatment she was receiving, as you can guess it devastated us, although she was seriously ill and we knew the dreaded outcome it was a sudden and unexpected complication that took my beautiful mamma from us.
Suffering from severe chronic migraines/cluster headaches, fibromyalgia, severe depression and all that comes with each illness has left me feeling trapped and out of control, although the stress and devastation has caused me flares and constant pain, I've seemed to have reached a stage where im shut down and numb, almost like my body is holding it all in ready to unleash the flares in one go and its actually terrifying me, in the last two years I've been bed bound for 80% of the time,I've gained weight suddenly and uncontrollably,which I've discovered is a normal part of fibromyalgia after a progression of symptoms but doesn't mean i don't want to get my body back. I'm also frustrated due to the lack of care and help im receiving from health care professionals, if it wasn't for my GP who's been my life line for the last two years i don't dare think where id be now, I've begged to be sent to a new neurologist due to the lack of care ive received from my neurologist who seems to have just given up helping me, I've also begged to be sent to a Rheumatologist but there seems to have been a understanding made that rheumatologist won't treat fibromyalgia.
I really need to try and see both neurologist and rheumatolagist and hopefully receive some answers and treatment.
My dad has also decided to contact social services to see what care and support they can offer me due to the fact my needs might pass a stage that my dad and brother can't help me, although i agree the thought alone is filling me with dread and anxiety, if you've got in contact with social services for help with fibromyalgia please comment and tell me how it is and your experience.
yesterday also marks a year since i had to reapply for pip and a year with no money, after my assessment two weeks ago and the fact that the assessor couldn't under stand why i was being assessed when my medical evidence covered everything they needed im hoping that will be the end to all this stress again for the time being.
Sorry that this is so long but i needed to get it all out of my head, if anyone has any advice,stories or thoughts please comment or message me. xo
Written by
MigraineGirl
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I am so sorry to hear about you're sad loss of your dear mam, I understand how difficult it must be for you having lost both my parents. I cannot say it is an easy process but it does get a little easier over time. I would consider getting Bereavement support (I did BTW), Cruse Bereavement Care website is below;
The stress and upset is understandable plus a natural response to losing someone you love, however this will be impacting on your symptoms through no fault of your own just the way Fibro works. It doesn't like stress and this often exacerbates how severe the symptoms can be, with time and support this should subside. You may need to keep as active as possible with bed exercises taken into account fatigue and working up slowly when you feel you can to increasing your exercise tolerance. Pacing can be hard to get used to and often people fall into a push & crash cycle which for us is best avoided.
I wondered also whether you had had bloods taken recently as other things like Vitamin Deficiencies can also make symptoms worse, so this may be something worth looking into. A simple blood test can be done by the community nurse at home if the GP requests it.
If your GP is not willing to refer you then when you can it might be worth seeing another GP and if s/he remain dismissive, you may have to write to the practice manager about your feelings that the healthcare you're receiving is inadequate. The link below may be helpful as it has a template letter which makes life easier;
Social Service may be able to help and a Social Worker will come over to talk to you. it may be direct payments for a carer to help you may be an option. I see you said you applied for benefits and you didn't get them - I would consider speaking with the Fibromyalgia Action UK Benefits Advisor , all contact information below;
Also if you can or maybe you're Dad can find out if there is any advocacy groups nearby that can help support you whilst claiming usually associated with the MIND Charity plus contacting Fightback4Justice (link below) might be worth considering;
I noticed your post is not locked to the community only, which means it can be found by internet search engines and read by anyone on the internet. If you lock it only the first few lines are visible and can only be read in full by members. Link below explains how to lock it;
Sorry for the long reply, but I wanted to cover everything I could to try to help you as I truly understand. I wish I could help you more but my main thing would be to say get support and use the community to talk if you need to If you ever feel really low or just need to speak to someone the Samaritans are there to support you too, link below;
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If you ever feel really low or just need to speak to someone the Samaritans are there to support you too, link below;