Fibromyalgia Stages of Grief

All your fibromyalgia experiences, questions and answers.

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Re: Fibromyalgia Stages of Grief

Postby maz 2k7 » Wed Dec 14, 2011 4:24 pm

Hi all,great post,im about to see a physio does this help.my doctor has told them i may need a walking stick as i have poor balance hes given me 9 out of 10.I go through stages when i feel good then within a hour or two i feel like iv been hit with a brick,I thought i would make a xmas cake today but when i went to make it i forgot what ingrediants i needed is this normal,i had to get a cookery book out.I wish my brain wouldnt just stop,i have to laugh at myself otherwise i would cry,so fed up with fibro,
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Re: Fibromyalgia Stages of Grief

Postby shazq » Wed Dec 14, 2011 4:41 pm

Hi Maz

I have never been seen by a physio for my fibro but we have mixed responses from people, some it works for and others feel it makes their pain worse but its worth giving it a try as you might be one of the lucky ones. :hugs: :goodluck1:

The dreaded fibro fog :facepalm: it gets to us all :roll: i am always forgetting things, i put things in the wrong places, i forget peoples names, i am forever walking into the kitchen only to forget what i wanted. :roll: Your not alone. :wine:

Good luck with your xmas cake. :-D
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Re: Fibromyalgia Stages of Grief

Postby maz 2k7 » Tue Dec 27, 2011 1:49 pm

Hi shaz,hope everyone had a nice christmas day.In november i was told to apply for DLA by my doctor,so i did,i put everything down what i cant do,how the fibro restricts me,the slow walking the pain i get,the not being able to get out the bath without help,my husband has to lift me out,the memory loss,etc etc etc.Well xmas eve i gets a letter to say iv been turned down for the dla,it seems everything i put down they,ve twisted it saying i can manage to get out the bath i dont need help,and if i cant stand long enough to prepare a meal then i can always sit down,i told them i cant sit to long and my hands hurt cutting veg etc,well im going to appeal against there decision and see what happens,i hear everyone gets turned down and its hard to get it for fibro,i also have poor balance and gout,i didnt go for a medical or anything,they said they couldnt give me the higher rate or any rate,and that i can do things for myself with help,they also said im not in danger of hurting myself though i could be in some danger of falling,i really dont understand there letter much,my husband says they are contradicting them selves,I would like to say to them i hope you you get fibro then you will know what people are going through and what we have to tackle with the pain etc,
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Re: Fibromyalgia Stages of Grief

Postby shazq » Tue Dec 27, 2011 1:57 pm

Hi maz
:goodluck1: with your appeal, not a nice time for it to arrive. :hugs:
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Re: Fibromyalgia Stages of Grief

Postby maz 2k7 » Tue Dec 27, 2011 3:31 pm

Hi shaz , I had physio last year before i was diagnosed i was in terrible pain afterwards,iv only been diagnosed since november this year,it was a relieve to find out for sure what i had,not looking forward to physio again but it may be different this time maybe i wont get no pain who knows,Just need my balance sorted out its like being drunk without the booze inside me,.We were asked to go out last night for a party but i just couldnt be botherd whats the point when your on so many tablets,you cant drink anyway, fibro takes alot away ,people dont realize how it makes you feel they said to miss my tablets it wont hurt,i think people dont understand.A doctor told my daughter that fibro is caused by a virus,we thought she may have it because of all the aches and pains she gets she has a double curverture of the spine, thank god she doesnt,
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Re: Fibromyalgia Stages of Grief

Postby FluppyPuffy » Tue Dec 27, 2011 8:04 pm

The actual cause/causes of FM aren't known yet maz, so I don't why a doc would say that a virus causes it :facepalm: :facepalm: :facepalm: It's confusing and frustrating when a medical professional comes out with duff info :-x :-x :-x A viral cause is just one possible cause, along with other ideas.

Glad your daughter doesn't have FM, I worry about my son being affected, esp when he says something hurts/aches/cracks and pops :facepalm: :facepalm:
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Re: Fibromyalgia Stages of Grief

Postby Katblack » Wed Dec 28, 2011 2:16 am

I don't know about grief, but i felt relief on Friday after my diagnosis, mainly because I have been feeling so ill for so long that I was beginning to think it was all in my head or I was some sort of Hypochondriac, but today I feel angry because I was diagnosed by a Pain Specialist Consultant at the Royal National Orthopaedic Hospital that I attend for my Spine/Scoliosis, and was convinced there was something badly wrong there, I mean my back is a big problem, I have Spondylolisthesis, Degenerative Disc Disease and Arthritis in my lower back and neck but have been told they are not the cause of all of my aches and pains, I thought they were going to cure me and realisation has begun to set in today that they can't :( The Depression was already there...
Kat x

Scoliosis, 2 major spinal surgeries, DDD in neck and lumbar spine, Spondylolisthesis, HMS and now FM!
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Re: Fibromyalgia Stages of Grief

Postby alikat1 » Sun Jan 08, 2012 12:21 am

A great post indeed!

The issue that continues to affect me the most is the realisation that I am most likely never going to work again...yet, as an entrepreneur I have tons of ideas! Just not the ability to carry them out...

It has definitely been a grieving that I have been going through... Knowing that I am not reliable anymore...and that we are now a 1 income family that struggles, reliant on benefits and hoop jumping excercises in order to even get these!

I'm very lucky though...I have a wonderful, kind, supportive and generous husband (who gives me massages and does the ultrasound daily for me). Wonderful friends -who know I go through ups and downs (and a lot of cancelling out doing things together...).

We have a roof over our heads, food in the cupboards, 2 cats that give me/us so much pleasure.

For me, I know it could be so much worse than it is! I guess I just wish that there were pain relievers that did help. I am from Canada and in desperation, asked my doctor for Percocet (a pain reliever used a lot in the States). He nearly fell off his chair! And told me in the UK it is only used for people who are terminal! (My aunt was given it -for an infection in her finger...).

Every day is a new one! As my father says (and he has Alzheimer's), he woke up that day -so that's a positive start!

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Re: Fibromyalgia Stages of Grief

Postby animalhouse » Sun Jan 08, 2012 4:30 pm

alikat,

i am the same as yyou after going from such an active, buzzy, busy person to a what do i do now. i am not use to being immobile and virtually brain fog,

we have ran post offices, B&B, internet sites and sales and many other stuff but the though of anything more than surfing the net now nevermind setting up a website or selling on ebay is too much for me.

can i ask you mention massage and ultrasound - how come you have an ultrasound machine at home please?

its jsut i have tried heat packs, wheat bags, ice packs, massage, osteo, swimming, hydro but have never seen any at home ultrasound machines only little massage/heat devices.

thanks and take care.
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Re: Fibromyalgia Stages of Grief

Postby Trolldoll » Sun Jan 08, 2012 6:24 pm

Wow i almost feel better myself knowing im not really alone in this ! thanks guys :-)
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Re: Fibromyalgia Stages of Grief

Postby trafficklights » Mon Jan 09, 2012 3:31 pm

I still don't know what stage I am at. I was always happy go lucky nobody outside of my family knew I suffered from bouts of depression I was always up for a laugh and laughing at myself.
I don't seem to laugh as much as I used to and I believe laughter is a great antidote to many things. I keep going off the subject getting on my own nerves.
I used to practically live next door to the place where they hold fibro meetings (didn't know this, then that was before I'd heard about fm) now I live the other side of town and it would cost too much to get there.
As I'm writing this I'm re reading what I'm writing and that's the biggest cop out there is....cost too much I'm sure there would be someone who could give me a lift. My problem is I can't face it I'd much prefer to remain in the forum.
I wonder if anyone else feels like I do that with all due respect I don't want to be in a room full of sick people. Another cop out.
I guess I'm not ready to face the "world" with this and it embarrasses me. How weird is that!
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Re: Fibromyalgia Stages of Grief

Postby FluppyPuffy » Mon Jan 09, 2012 4:46 pm

You're not on your own with these thoughts trafficklights, for me it's not so much the :oops: :oops: :oops: or being in a room with sick people, it's the fear of meeting anyone new face~to~face, esp in a new, unknown place, which is the complete opposite of how I used to be preFM.

Laughter is a great antidote to things, but it's not surprising that we don't laugh as much as we used to with how worn down we get :( :( So long as there are still things, no matter how small, that can still make you giggle and smile, then the glimmer will hopefully keep you going and help you find your way thru the horribleness and back to something a bit brighter and better :fingerscrossed: :fingerscrossed:

We're all at different stages along the way, there are no hard and fast rules about where you should be by a particular time, we just make our own ways thru it at the rate that is right for each of us. It doesn't matter if there are a few steps backwards and a few revisits to some of the bits we've previously got thru. So long as you can keep that tiny glow in view and can head in it's direction, you will get there :blowkiss: :blowkiss: :grouphug: :grouphug:
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Re: Fibromyalgia Stages of Grief

Postby crazycat36 » Wed Jan 11, 2012 11:38 pm

i think im at the depressed/acceptance stage which is good the last i looked i was at the denial stage and thought the grieving was a load of rubbish but now ive got loads of things put in by OT still waitin for a couple more things but think there budget has run out for this financial yr lol.....its happened before.

the thing im still struggling on is do i get a disability car for gettin around on good days only as thats the only reason im allowed to keep my license which will mean my kids and i hav a lot more freedom as im a single parent of 4.

or do i get a mobility scooter for gettin around locally in an ideal world it would b both but this isnt and for over 6months ive been unable to decide which one to get as i live in a small village but with a scooter i could get to tesco from my house and bk for the shopping and take my dog out for walks again instead of my kids doin it but if i hav the car ill be able to go up town and to the beach in good weather and go to friends houses who live a fair bit away. ive talked it over wi loads of people but nobody seems able to help me decide. also another main point of havin the car is gettin my children to orthadontal appointments as thats a fair bit away and would mean 2 buses during school time instead of them just missing an hr as im there about 3 times a month. also my dentist isnt easy to get to and i cant change detist as there all full and i was lucky to get into the one ive got which in the car is like 15mins away by bus is over an hr there and the same bk.

sorry for goin on but i really dont no what to do
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Re: Fibromyalgia Stages of Grief

Postby shazq » Thu Jan 12, 2012 2:33 pm

Hi cat

You have to decide which is going to be the best one suited for your needs. :goodluck1: with your choice.

The car will take most or all of your DlA, I guess the scooter would be cheaper leaving you some extra money.
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Re: Fibromyalgia Stages of Grief

Postby FluppyPuffy » Thu Jan 12, 2012 2:40 pm

Cat, what about resorting to the tried and tested method of writing down all the pros and cons for each option, then see how you think and feel when you've gone thru it all :dunno: :dunno:
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