Friends I have never met

Bones, joints and muscles
1

Do you remember the day of diagnosis - How did you feel? This is called Friends I have never met.

I still have that piece of paper

With its scribbled word Fibromyalgia

It’s tucked away now crumpled with dried tears

Tears of frustration or grief or relief

I really don’t know.                                                                      

So many years of not knowing the how or why

I felt so ill.

So what of now

Well from that lonely day of diagnosis

When sent away with the words

Be positive how could I be positive

I knew nothing, knew nobody afflicted with the same illness.

I looked around me the sun was shining

How could it shine today of all days did it not know

I watched the world go about its business

It seemed in slow motion

Oblivious to me and my tears

I watched people wander by and it struck me

They too had their trials and tribulations and may or may not

Have an invisible illness

I felt abandoned until

One day I discovered an on line world filled of people like me

Names,  no faces but characters all the same

With kindly words of advice and support

Friendly banter for the good and not so good days

And suddenly I feel alive, understood, appreciated

For I am one of many in a global fibro family.

 

2

Looking for the day when FF whill be only F for.....

3

Maggers youve done it again youve hit the nail on the head. This is exactley how I felt on the day I got my diagnoses, we are a global fibro family all sharing our experiences supporting each other through good days and bad, its a family that appreciate each other and understand each other, of what each every 1 of us is going through. thankgoodness for our fibro family gentle hugs take care 

4

A heartfelt read Maggers!  Especially for me today...Firbro still being something of a novelty at the moment.  After making contact with this great site and great people, I was beginning to feel almost human again, with that nasty grey cloud lifting a little.  I set to threading a new line on the old brolly-type washing line.  Not used to pacing myself, I battled on with the intricasies of getting it threaded right, not realising the effort was taking its toll until I went indoors, Then WOAH! pain kicked in in places it had not been before, then cramping in both hands, legs and back also not experienced before.  Frightening!  Being an ex nurse, thought process led me on to wonder if Fibro affects the breathing muscles too.  Haven't as yet read enough about it to find out.  Has anyone had any experience of this?

There is that overwhelming desire to go into a full stretch to ease muscle pain, but am now reluctant to stretch incase the cramps start up again. Any suggestions very welcome..

Blessings

Chickabee

 

5

Hi Chickabee

If this is a duplicate post I apologise but it seemed to disappear as I was typing it. Yes I get the muscle ache around the ribs or rather it feels like tentacles wrapping themselves around me and giving me a hug.  Only remedy for me hot epsom salt baths.  Find that sometimes breathing in I feel as if I am only using the top third of my lungs.  Like most fibro symptoms it comes and goes. We are all guilty of not pacing ourselves because on good days we like to get things done whilst we can, 

6

I think for me the fibro family saved me from sinking. I hadn't heard of fibro and was treated quite dismissively by the consultant. She just wrote it on a piece of paper and said go do your research. We don't treat it here so you will be discharged back to your GP. Nice..

7

Hi chickabee I went to see a lung specialist and had all different tests as I was having breathing problems. every test I had came back negative when I was diagnosed with fibro last year ten years to get adiagnoses. I did alot of research into fibro breathing problems is one of fibros many many symptoms. fibro throws all different symptoms at us, fibro is a learnig curve for us all legs back hands feet tinitus earache fibro fog are just a few of the symptoms of fibro.blured vision mobility is affected Im now in a wheel chair. symptoms and the severity of them vary from person to person. pain is the biggest thing in fibro the slightest knock is 100x worse than what some 1 else may feel. 1 of the hardest things we have to learn is paceing ourselves. because if we over do things we pay for it by being in lots of pain and zapped of all energy. research fibro as much as you can get all the help support you can. see if theirs a support fibro group in your area. ive brought different aids to help me like grabbers wrist thumb support Ive got walking aids a bath board ive got commodes up and downstairs as Ive bee bed ridden 3 years in a row  for 6 months and over with carers coming in to look after me.that wasnt a nice experience when youve always been an independant person and its you thats been the doing the looking after. take each day as it comes as fibro can vary from 1 miniute to another and from day to another day take care gentle hugs

8

A rheumatologist diagnosed me like you he said go and some research on it and go back and see your gp for pain relief and that was it. no explanation what fibro was or anything disgusting how we are treated. I was at a very low ebb 3 weeks a go and didnt want to carry on no more then I found this wonderful site and you great ladies this site was my saving grace. thankgoodness for this site and the lovely ladies on it take care hun gentle hugs

9

I am at the start of my journey, it is all very new to me still. The chiropractor suggested I may have fibromyalgia, when I started going to him because of excruciating back pain. My GP agreed but I am waiting to see the CMAT team now for a diagnosis to be confirmed. This forum site has helped me so much already to come to terms with all these rapid changes in my life, so I thank all the lovely people that I have met here for making life more bearable, even when I struggle! Thank you everyone. Being part of this community makes each day a little easier. 

10

Could not agree more.  Together we are stronger.

11

we definitely are! 

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the more we stand togeather the stronger we become take care gentle hugs

13

Perhaps that should be our mantra!

14

Scary that the so called caring profession treat us like that.   The consultant said to me "positive mental attitude otherwise you will never get out of bed"

and that was it.  Funny thing when I got the copy of the letter she sent to my GP well it was pure fantasy. She certainly wasn't in the same room as me! There was no way she discussed all the things listed in the letter.

15

I saw one of many specialists trying to get an answear for how I was he was so rude to me and dismissive baically I was called a liar I was so angry with his attitude to towards me that I gave him what for. The nurse said to me when I came out the room good for you. I went home got on the phone to my gp and complained about him I was fumeing. my husband was with me also he wasnt happy with him neither. he was a very rude arrogant man well he got dropped down apeg or two these so called specialists make so angry how we are treated take care gentle hugs

16

I agree I think it should be

17

Yes some of them need to learn how to communicate.  My GP is the exact opposite. Lovely, kind gentle person who is pro active whenever I visit her. Although she does look about 12, she is tiny and sits in an enormous chair. I always find it amusing.    I am showing my age - everybody looks so young, doctors, policemen, teachers.

18

so  glad you have such a good gp that counts alot even if she does look 12 haha. Im feeling my age also never mind onwards and upwards 

19

Definitely!

20

another 1 ive just thought  of is united we stand divided we fall