no joy: The pain just to walk to the... - Fibromyalgia Acti...

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no joy

dpain profile image
20 Replies

The pain just to walk to the doctors !! 330 appointment to be sit waiting an hr, to go in the room be confronted by not the doctor made the appointment see?

Already i knew id have no joy!!

Ive been in constant pain from head to toe for weeks, memory playing up have no sleep, headaches an dizzyness on top :-(

I have all the symptoms for fibromyglia.along with osteoarthrities, an siatica..

But My doctor insist no one can be dignoised with fibromyglia, its just chronic pain nothing but pain killers to be given,

Wont provide a written medical letter if i need one

Yet again im made to feel as though its all in my head and im hypocondriac

Anxiety an depression is taking over feel so low an crying inside,...

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dpain
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20 Replies
clare_hart profile image
clare_hart

The ignorance of the medical community, not to mention that of the public in general, is so widespread. You will find references to it all over this site.

I'm truly sorry you are experiencing this. I hope someone can toss out the nonsense and see the freakin' truth. Push for your needs to be met. Maybe insist on a referral to a rheumatologist? Others on the site will have suggestions for you. I'm so tired of doctors who refuse to accept FM as a disease and prefer to think we have anything but, often going so far as to call us hypochondriacs.

lou1065 profile image
lou1065

If I had the energy I would be jumping up and down with rage, it never ceases to amaze me what some of us put up with, if I were you I would complain very loudly about your treatment, yes fibro is painful but its so much more, I am one of the more fortunate with the care I receive, everyone should have this. I do hope you get proper treatment soon, you do sometimes have to fight for it unfortunately. Lou xx

Regnofibro1 profile image
Regnofibro1

The main problem is medical community don't like to give a diagnosis of something that they can't diagnose with blood or something! Fibro is invisible and it can attack anywhere anyway anyone anytime it wants to! It is felt and doctors can't feel what we feel!!! They know it's there by have really no clue how to cure it!!! So what do they do a lot of pretend it's not even there that it doesn't exist! Or it's something else! We are lucky to have some doctors that will treat us the best they can! I truly hope you find one that will help you anyway they can! I also believe some research scientist out there will come up with a cure! With luck very soon!

clare_hart profile image
clare_hart in reply to Regnofibro1

Regno, you are so right. I never thought of it that way. I think it goes back to my favorite saying: they all have to pass "Arrogance 101" or they wan't make it to intern.

They think they have the corner on health and healing, when in fact, we are maybe a bigger part than they are and often know better than they do what we need. Fix, fix, fix. Sometimes there isn't a fix, just an attempt to make life less unbearable and do the right thing: be compassionate and admit that such a thing exists as a disease without one answer for everybody.

Manu2015 profile image
Manu2015

Hello dpain your doc is talking bull cos it was my doc who told me that I had fibro sounds like u got it as bad as me maybe even wrose u should see a different doc who will help u if u need my help just ask matthew

dpain profile image
dpain in reply to Manu2015

its got worse over 10years use to be odd now and again butfor last 3 years its been constant pain everyday...

My doctors are now are young husband an wife team,

quite happy to throw every pain killer and anti depressant my way an make me think its all in my mind an should just get on with it...

rosewine profile image
rosewine

What a horrible experience for you it must have been so disheartening to walk in there after that wait only to find a different doctor to the one you hoped for. I am worried as I will have to change doctors as at least the one I have now believes there is such an illness as fibro and has been trying to help me with treatments.

Did the doctor give any reason why they would not give you a letter, I presume you want one in order to use it as evidence for applying for a benefit?

Big soft hugs coming your way.x

dpain profile image
dpain in reply to rosewine

very disheartened as i walked in...

like going in for a battle never going win - my anxiety and emotions over took me and ended up crying...

to try explain the everyday pain-- disrupted sleep an headaches

Even hard take on board knowing others have doctor who are sympathetic and understand there patients

only suggestion my doctor gave is to be sent to a pain management clinic to told how to maintain the pain...

rosewine profile image
rosewine in reply to dpain

I would certainly give the Pain Management Clinic a go, in fact I have my appointment for my Electronic Acupuncture with them. They haven't actually arranged any other treatments for me but they always do a letter to my doctor after the appt and reiterated things like hydrotherapy might help or have suggested a pain killer. I find the one Pain Nurse very easy to talk to and if no one is waiting he sneaks a bit of extra treatment in for me, I am only supposed to have treatment on my back and he will do my hand and hip. Others have had quite a few treatments arranged for them so I would certainly give it a go.

If the Pain Clinic prescribe a certain treatment it will be difficult for your GP's to wriggle out trying to arrange it for you.x

My doctor sent me to see a rheumatologist because of problems with my arthritis. It was she who diagnosed my fibromyalgia. She did lots of tests and liased with my gp at all times. My gp is more supportive now and referred me to a pain clinic which has really helped. Perhaps your gp needs to see these posts so they can understand what we go through. If it's possible change your gp and ask your surgery if there's one who knows about fibro. I challenged my gp about my pain as I knew it wasn't just arthritis. It's a shame we have to fight to be heard. I thought we were an advanced country. Maybe not. Good luck.x

dpain profile image
dpain in reply to

I have been to both the doctors at my surgery and as there husband an wife, team,

feel as though no soon as you walk in the room, theyve already fed up with the sight an hearing same old story..

ive tried all meds they ve gave me which most were anti depressants, found the morphin patch eased the pain but didnt like the side effects felt high, fell down the stairs and when stopped taking them took 72 hours get over withdraw effects, plus most tablets triggered other issues off IBS, headaches , nausea,

Maladjusted profile image
Maladjusted

If I were you I would accept the appointment for the Pain Management Clinic. That's what I asked for, they diagnosed me and prescribed my medication, and arranged a lot of other help and support.

I can't say yours will be the same, obviously, but it has to be better than your current doctors.

Good luck

Em x

dpain profile image
dpain in reply to Maladjusted

i will go to the appointment and hopefully like you i might get something sorted and with a bit more support. Since there a pain management people x

Maladjusted profile image
Maladjusted in reply to dpain

I hope it is successful for you dpain. I am very fortunate to live in an area where Fibro is accepted. I am more or less expected to 'get on with things' now, but the support given during the first year was invaluable. I was also sent to see a psychologist. I didn't want that, but later realised I just wasn't accepting the diagnosis and continuing to try and live my life as I had before. Adapting and accepting the changes is very hard. Personally I feel that support should be offered to everyone with a Fibro diagnosis, but reading this board I realise some doctors are living in the dark ages. Yours sound horrendous. No hope of changing them? If not just nag them into submission. You have the right to ask for referrals, and 2nd opnions.

Good luck, Em x

BaffledKaffy profile image
BaffledKaffy

I would go to the Pain Mgt. Dr. ~ Mine has been VERY helpful w/my needs, and has even helped in the case of the retirement of my neurologist, giving me the drug she was in charge of prescribing for my migraines ... They are very much in tune with all sorts of diseases, syndromes, and other issues patients have, and it may be just the start you need to get your diagnosis, or at least on to another/better doctor!

Good luck ~ I hope you feel much better very soon ... Gentle hug, bk

dpain profile image
dpain in reply to BaffledKaffy

thank you

baffledkaffy

Pain clinic is my last hope i think,

hopefully i may get some joy and a bit of painfree days x

All Ive got from pain clinic is a mindfulness course which doesnt help the pain but does help the depression I get from the pain. Hope your pain clinic is better. x

dpain profile image
dpain in reply to

I have now to wait for my doctor to make the appointment which could take upto 6mths due to the volume of people waiting to be seen..

Until then i plod on x

TheAuthor profile image
TheAuthor

I am so genuinely sorry to read that you had to endure such an unpleasant experience with such an uncaring and unfeeling doctor. I would look around for another surgery if it was me. I want to genuinely and sincerely wish you all the best of luck.

All my hopes and dreams for you

Ken

maggi999 profile image
maggi999

Contact the CAB, local MS Therapy centre (they also treat people with Fibromyalgia) or anyone else who could be an Advocate for you. It's outrageous that they can behave in this way.

Make reference to the Disability Discrimination Act which I believe mentions Fibromyalgia as a disabling condition.

Insist that they do your referral to a pain clinic so that you can get help to manage your symptoms - medication can help, but it is not the only answer.

Very best of luck, Maggie xx

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