the imaginary pain

Filipina lives in Belgium. It started when I was 30. Im 37 now, cant walk properly even typing is becoming difficult. Ive been fighting for my rights for 7 yrs now, but still my case is questionnable until now since it cant be seen in scans. Been through all scans that they required me and most of the specialists that I met, are still in denial.1 specialist was even giggling while I was explaining my symptoms. The pain is undeniable and depression is always just around. I already signed a contract to donate my body in the future maybe it can help for future studies yet still I am doubtful since I dont really get full support from the state and I am always ridiculed and laughed at even by the society itself.

I had a GP laugh in my face this year and I tore a strip out of him and told him that he should retire, he missed my wife's breastfeeding cancer in 2012. So called professionals should be struck off as they over paid idiots. 

are sweetheart i am sorry for you its not much better here . 

i am in a lot of pain since this cold snap all over i am so tired as well it seems the pain when its all over tends to make me so tired . all i want to do is wrap myself in a blanket and sleep . i do mostly fight it . but other people including the medical proffession make me so tired   . because they cant see the pain we are in some how its not real .and we all nothat it is .i wish you well and hope you can find some help soon.

 

Filipina, please try not to worry about the dr's being sooo negative, unfortunately it's their problem not yours..even though you have to pay the price..I took info off google to my doctor and asked him to read it..he was just fascinated..this was years ago..but it did make him look into Fibro...such negativeness from Drs is quite normal...when they are looking for a diagnoses..I do believe, worldwide all doctors should be educated on this Fibromyalgia...it's terrible what we all seem to go through just to believed and that this pain is not just in our heads..No wonder depression is just around the corner..I am in Australia so our weather here us lovely at the moment...cold wether is rotten for Fibro...use as many heat packs and hot water bottles as you can...I did and the results were good..remember..heat for pain....cold fior swelling..stay strong..:-) xx

ya, as what I also notice nowadays a lot are getting more sicker. Our family doctor was the only 1 who was able to determine it. But the specialists , damn. So scared determining it since I am also a colored one and I'm sure ,inside their heads. I would be also like other races "thinking advantage of their subsidies"

hello, ja i do have prescriptions  but sadly due to my fibro, cant move that much like before, I gained so much weight even the touch of my own clothing hurts on my skin. Do you have electric blanket, try it it helps a liitle bit. God, I bought an electric blanket, footwarmer,&foot massager but it helps a little bit if im about to sleep. From the pain that I have and the stress of day to day life, I do sometimes wish that I am out of this world.

ya,its really worst here since fibro is aggravated by cold. As I am having difficulties now to move my left side of my body, it makes me feel that I am detreriorating so quick that I might end up in a wheelchair. And that I might not be able to accept. I was productive before always movingand never was dependent on my husband. But now its only him working ,with our son going to school. Its really undeniably depressing. If 2 of us are working, our fianances would just be enough. Its really tough for me,and de excruciating pain 24 hours a day.

Don't be thinking of wheelchairs precious...when the weather heats up you will have less pain...try to focus on the Ebola crisis or something like that..that's what I do when the pain is quite unbearable .there is always people worse off than me I found and it really helps my mind if not my pain...makes me feel better, pray it will you too..:-) xxxx

i cant win the summer nearly killed me i was totaly housebound due to the high humididty this year i swell up and the i get pressure on my nerve endings giving pain and pins and needles ,cold and damp the same .also these two weather conditions make me struggle to breath , i cant do saunas either. but now its gone reall y ice cold and clear from damp its another sort of pain like stabbing followed by tight acheing. 

i have to sleep on cool mats in the summer because i am so hot even in winter i take one to bed with me and hold it against my midddle .but if i leave my selff uncovered in bed i feel every little draft and its agnony .

i use a electric heat pad for my back and those ones you stick on clothing when i am acheing .i tell you some times i think i am going mad and just want to go to bed and not wake up . i am not weak or feel sorry for myself its just so crippling this condition ,and what with being an aspergers sufferer as well i am so sensistive to even the basic pain killer i have no let up because i cant take anything on a regular basis for the pain .

my husband has sent for a self help  programme , as part of my christmas present it has some really positive out comes and recoverys 

its in use all over the world

.and offers you a complete money back gauruntee if you feel it has not helped you in 6 months . if your interested i can private message you with its name. cant do it on this page as its classed as advertising. try adding b12 q10 and magnesuim as supplements they do help .

The cold never used to bother me until this year, I had an accident about 15 months ago / last year was Ok in the cold but this year for the first time ever I wear socks in bead and Gloves when I am outside.

Having only been diagnosed in September all of this is new territory for me. Lots of people look as if to say , yeah right swinging the lead a bit aren't you but some others do understand. 

I am going to go to a help group which truly is uncharted territory for me but I do need to speak face to face with people that understand how it feels to have this constant pain so maybe you could find a pain group near you I am sure that will help us to understand what we can or can't expect from our body. .....

good luck and best wishes 

 u get very few good doctors these days .there legalised drug pushers , i am glad your wife found help in the end and recovered 

but know one should go thru anything like that it puts people of going to the doctors

my friends husband was told he had acid reflux and he was fobbed of with ant acids he died from throat cancer 18 months later just 41 .

so you could say your wife was lucky in the draw but peoples health shouldnt come down to luck of seeing the right doctor , esp when cancer is suspected

.  eating an akaline diet is supposed to be of great help at keeping cancer and other illnesses at bay , i am trying to put more akalising foods in my diet , but as i have aspergers syndrom as well i do have an over sensistive stomach so have to do it slowly and build up .

there are lists of akaling foods on line maybe take a look apparently cancer cant live in an akaline body and most diesease cant live in akaline body either. . raw honey and apple cider vinger with ceylon cinamon is excellant hot drink .

 

What a great idea a support group, wish we had one here, I'm in Oz....

people who don't understand..it's their problem not yours..I've had it for over 17 years now..and others opinions of it matter the least to me....stay positive..it helps..:-) xx

Talking to people about personal issues face to face is totally outside my comfort zone but I can now see that it could help me 

Absolutely Graham, it's great, soooooo much support, encouragement and empathy..not to mention treatments that people have tried and passed on..enjoy...

yes i know that one to ,due to having aspergers i find it so diffitcult to get my worries across if something new appears thats the main reason i dont bother with the gp simply because i get so stressed knowing that he really isent listening and just wants to write a prescription and show you the door .so i never get to say whats wrong . 

I was at the GP's surgery about 3 months ago in tears with my pain and this particular Dr turned to me and said "it's not like the hospital isn't do anything for you is it" exploded.

This is the man that dismissed my wife with swollen gland in her arm pit........We then found out FOUR MONTH'S LATER that she in fact had stage breast cancer which had spread to her lymphnodes 

So this man shouldn't be allowed to practice anymore 

Thankfully she has made a full recovery 

i agree with you 100% they just dont give a dam in most cases fob you of

with anything , my left arm has been swollen for over 10 yrs since a fall i did go to see them all i got was we are all bigger one side , 

yes but not that much bigger , i am still here so obviously not cancer but just recently it has got bigger and hurts from time to time i was going to mention it a few months back when i went to get my bloods done but i hardly had time to draw breath before it was next please

, i didnt even go back for my bloods i felt so upset i hardly ever go i am not a winger there every week ,like most of us arent yet i was treated as a nuisence .its bad enough we suffer like we do but we should be treated with consideration and understanding of this very painful draining condition

A lady I knew had a very swollen arm...she was a FMG sufferer too. Hers was Limphodeama sooty about spelling..anyway she was fine, she wore a rather tight sleeve on her arm for quite a while to stop the swelling..it was a lot of fluid..,it's just terrible about how we are treated at the docs...there should be local Fibro Docs everywhere..juspdging by the amount of people with it...keep strong..,I took control of my health and just wouldn't listen to the docs that just thought I was a nuisance, I just became one...that seemed to work,..I never leave a surgery now without being satisfied with my consultation..I will even tell them they need to be more knowledgable on Fibro..that  it's their job to know and not mine...doesn't always go down too well  with them .but I'm satisfied,,:-) xx

yes it was fine before my fall in 2000 i only put one arm out to break my fall so my right arm stayed ridged my neck went back and i broke 3 ribs it was my right hand that i landed on but its my left arm that became swollen .

so i think it was like a ricasha with the impact going up my right arm into my left arm causeing the sweling. if youknow what i mean.it looks horrid to i have to always go up a size or some times two  in tops with sleeves if there not strech .its really annoying because then its to big every where eles . i wish i had your ability they just always make me feel so small . but its nice to know someone is kicking arse out there .i try the sleeve . it might help with the weight of it . its proberly whats hurting .

thanks for reply .

If you have hospice nearby pop in and ask if they have a lymphodema nurse or clinic. My wife where's a full hand and sleeve as the surgeons removed all of her lymph nodes on her right side. 

She also has exercises to drain the fluid from her arm.

You can actually have blocked lymph nodes so again ask at the clinic.

Holding your arm over your head and gently massage your arm towards your shoulder is the main thing but if there is a massage business that you can try then they could do it for you