Scared and worried.

All your fibromyalgia experiences, questions and answers.

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Scared and worried.

Postby Libby Clark » Tue Jun 24, 2014 8:43 pm

Hello lovely people,

I am sorry but I need to let this out somewhere , so here I am, my DLA is due for renewal next April, and I am already stressing the hell out of myself about it, every time I have applied I have had to go before a board at a tribunal and they have made me feel like a fake and a liar, I hate it. I know it's months away but this last few days it's really been playing on my mind.

I have chronic degenerative disc disease as well as FM and Plantar Fascitus I am being treated for depression and high blood pressure too just to make it more fun. I am on so many meds that I have to do a pill box ,I take over 25 pills a day plus Ora morph.

I know in my logical head that I am being silly but things are just getting to me at the moment, I do work for myself and so am able to control what I do and when but it's getting so much harder , and I don't work we don't live.
The thing that is getting to me at the moment is the most is the incredible tiredness, I am just shattered, and I have no idea why I can get up In the morning have breakfast and within an hour I could fall asleep standing up! I can have a mid morning, lunchtime and mid afternoon snooze and still be falling asleep by six, but get I to bed and my twitchy back and legs keep me awake for hours. :(


If I do anything at all physical I am literally running with sweat, I have given up on my hair because most of the time it is wet through and dripping, I have to change my clothes numerous times a day because they are wet and this is such hard work, I have resorted to baggy cotton dresses and grannie knickers, cos I have to wear a pad, and jus t feel like rubbish.


I know I am moaning but everyone I talk to family and friends says oh but you cope so well. .......I don't want to cope :evil: I want to stand and scream till I am sick, like Violet Elizabeth Bott in the just William stories I want to sit and cry till I drown in the puddle and I want to hot something or throw something but I know I won't.

My GP is bloody useless and that me being polite ,the last time he went he said that I would eventually get used to it, and did I need a wheelchair yet ?????

Noooooooo I want to be me and not have all of this pain and hurt and stupid tiredness, was what I replied, he smiled, patted my arm and offered me a higher dose of anti depressants and Ketamine if I felt I really couldn't cope !!!!

That's right dope the silly bitch out till she shuts up. I left ..... Quietly, sat in my car and sobbed, the old lady in the next car bless her asked if I was ok, and I said YES I AM FINE !!!!!


Ok ran rover I am retreating back to the sofa with a cup of tea and my pill box and watching the clock till I can take my next fix.

Thanks for being there , you will never know how much I appreciate you all xxxxxxx
Libby Clark
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Re: Scared and worried.

Postby rubes » Tue Jun 24, 2014 9:40 pm

Mine not due till next July but have been sick with worry last 12 months.
I have found the only way to cope is to accept it, my GP's are great, I take much more medication I know how you feel honestly I do.
FM is hell, I also suffer severe anxiety and severe depression, I rarely go out of the house, I have hellish panick attacks.
The problem with FM is that there are so many symptons, please please try and accept, you are not giving in. X
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Re: Scared and worried.

Postby pipchase » Tue Jun 24, 2014 11:16 pm

Dear scared and worried, I am the wife and carer of a fibromyalgia sufferer and we are experiencing absolute disinterest from our Doctor.

My husband was diagnosed by a rheumatoid arthritis Professor who told my husband he would just have to learn to live with it! We had no information other than a booklet that made the illness seem to be mostly in his head, yet the accentuated pain, exhaustion, depression, and utter agony and tremors have been glossed over.

My husband has had four mini strokes and a condition called benign positional vertigo which leaves him constantly giddy , as well as the usual high blood pressure, deformed knuckles on his fingers and toes and a few other problems that just add to his wonderful quality of life!.

The point is, there seems to be no actual recognition of the symptoms so the diagnosis is very hit and miss apart from the fibromyalgic points and there is no recognition of the suffering or disabilitating effects of this horrible illness so perhaps every one should unite and push for proper specialists in this illness rather than be lumped with rheumatology , we need specific and specialised help with a universal acceptance and treatment like diabetes or even rheumatoid arthritis rather than an embarrassing cousin.

Different councils recognise fibromyalgia, ours doesn't, we need to be heard AND BELIEVED! We had our DLA taken from us for a year and have had to fight for every penny, even now my husband has been put on the support group of esa after a fight, yet because I get carers allowance we are now two pounds a week worse off, so where is the justice in that?.

I appreciate you are at the end of your tether, but please, please find the strength to fight it, you are worth it, those of you who suffer every minute of every day understand, and by fighting the idiots who play with our lives we are emotionally sticking two fingers up at the system. I personally am doing everything I can to bring awareness and justice for fibromyalgia sufferers so do not despair, you feel alone but you are not. I can only hope that this will help you and wish you peace of mind, or at least a little comfort.
Last edited by FluppyPuffy on Wed Jun 25, 2014 9:21 am, edited 1 time in total.
Reason: Split larger paragraph into smaller ones for easier reading.
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Re: Scared and worried.

Postby ouchisme » Wed Jun 25, 2014 9:44 am

just loads of squishy (((hugs))) and just to say that we all get overwhelmed at some point or other. Regardless how long we have been living with chronic pain.

:blowkiss:
Had symptoms for 5yrs. Dx February 2011
ouchisme
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Re: Scared and worried.

Postby Minniemum » Wed Jun 25, 2014 10:50 am

It's so weird the way Doctors, the various benefit agencies and local authorities treat FMS sufferers. I know the symptoms vary between patients but if there could be an agreed scale like GCS (Glasgow Conscious/Coma Scale) I think it's called, whereby patients could assessed and be entitled to support relevant at that level.

It's just an idea, no doubt flawed, but to those of us who get nothing it could make all the difference.

I know we all have differing symptoms but the are the basic things like pressure points, pain, insomnia, fatigue are common to all. Then with that as the foundational basis, for example, other things that differ like mobility, incontinence, IBS etc, etc, could be added for an individual 'score' that would then entitle us to the relevant support at that level.

Where I live there is minimal to no help, less than 5 miles away someone I know gets so much help to support her including home adaptations. It's not morally right that so many others get no help at all .

They're really does need to be a way of giving appropriate, targeted, balanced support to FMS sufferers.
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Re: Scared and worried.

Postby Billsmum » Wed Jun 25, 2014 11:50 pm

The trouble with Fibromyaglia is the word it's self! It just means muscle pain, which as we all know is total rubbish!! I had a Doctor at work tell me to take more exercise at the time I was working 13 hour shifts on a busy surgical ward. Needless to say I wasn't coping very well and had to take time off work( I was newly diagnosed. ) Go for a walk in your lunch break! What lunch break!!
We know it's a syndrome because of the other symptoms such as irritable bowel, sinus problems, vertigo, fibro fog, restless legs, these are just some of the ones I have, also the depression when you feel you cannot cope anymore!
But I'm lucky I was able to give up work , downsize and live on my and my husband's pension until I can claim my old age pension in a couple of years. Without having to go through the grilling you have had to deal with, I truly feel for you.
But what else can we call this horrible chronic disease to get doctors, etc., to take us seriously!!
Anybody have any ideas!
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Re: Scared and worried.

Postby Libby Clark » Sun Jun 29, 2014 4:25 pm

Thank you all for your support and encouragement,

I will not give up, I can't afford to have them say no and leave it at that, but as you all know only too well some days we just don't have it in us to fight.
Xxxxx
Libby Clark
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