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Primmy8

New member
Joined
Jan 20, 2014
Messages
2
Reason
DX FIBRO
Diagnosis
00/0000
Country
AUS
State
NSW
I have not been able to work for 10 years now, I am too unreliable and am unable to attend a full day, let alone two days in a row. I have had to fund myself as I got no govt help as my Dr doesn't believe in actually helping me get any help. Why? She is not too sure what fibromyalgia is, but takes my word for it (!). Find another Dr? Sure. Where? She is good enough for the little things, but ..... however I am on the lookout once again.

I wake with back pain often, can't sleep late but can't keep eyes open, takes me a couple of hours to get going in the morning, chronic back pain, spend a chunk of my day in a fog, sometimes workable, sometimes a waste of space, as well as Princess & The Pea syndrome (don't touch me, not a good idea). You know, same same. Just wish I knew what to do next.

I have been diagnosed with Chronic Fatigue, but told I no longer have it as it only lasts seven years (I go back to 1985). He was wrong. And so it goes on. Tried Chinese medicine which made me worse and worse and then worse again. Tried Naturopath, cost a fortune, not much change, resulting in here's your hat whats your hurry.

I am so mentally and physically tired. But getting help from friends is not forthcoming and I am becoming too embarrassed to ask for it. All in all, life is a challenge, and I need to have something positive around me.
 

debw

Member
Joined
Jan 15, 2014
Messages
17
Reason
DX FIBRO
Diagnosis
12/1998
Country
USA
State
ill
No one should have to go through this, most of us have. I am sorry that you have to experience this, you need to find a Rheumatologist.
 

Trellum

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Joined
Jul 17, 2013
Messages
1,788
Reason
DX FIBRO
Diagnosis
04/2011
Country
NL
State
NL
Sorry to hear you are going tru this... for me everyday is a struggle as well... right now is IBS and back pain (it's always something, right?). But this is the life we were supposed to live, so we should really try to make the most out of it and try to stay positive. I know it really hard specially when you are feeling sick nearly everyday, but is all e can do.

I really think you need to see a good rheumatologist that specializes in fibro, once you do that you can rest assured you are on the right track. Hopefully you get the right medication and you stop feeling this way :)
 

Hopefully

Member
Joined
Jan 21, 2014
Messages
14
Reason
DX FIBRO
Diagnosis
01/2000
Country
Ca
State
Ontario
Primmy8, I feel everything you said. It's unbelievably hard to get through each day, let alone think of tomorrow or a lifetime. It should be surprising that your doctor doesn't know about or believe in fibromyalgia but nothing surprises me anymore. Do you live in a rural area? You would think that doctors in urban communities are more aware if such things but again, I wouldn't count on it. It just pisses me off so much that some medical professionals would have the audacity to pass judgement on whether my pain or your pain are real and worthy of being taken seriously. HOW DARE THEY!
If you have any other doctors available in your area I would make the effort to check out someone else. I think it will be worth it. What have you got to lose? Pain?
 

LivetoErr

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Joined
Jan 15, 2014
Messages
137
Reason
DX FIBRO
Diagnosis
06/2012
Country
Can
State
Alberta
I agree that you should see a rheumatologist. They might be willing to recognize you have an issue and help you with disability.

While I think fibromyalgia is beginning to be recognized more and more, it's still one of those diseases people don't fully understand. How can someone put a time limit on an illness? That's a new one to me. The CDC says it can go into remission but that's often later in life.

I'm sorry you have to deal with a doctor who doesn't want to recognize something is wrong with you. They're supposed to be our advocates not our adversaries.
 

clearsky

New member
Joined
Jan 15, 2014
Messages
3
Reason
Diagnosis
00/0000
Country
AUS
State
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Your doctor sounds pretty ignorant and unwilling to help you, so you had better find a new one pronto! If you're in or near Sydney you should be able to find someone who is more open-minded. Hope you can get to a decent doctor soon, get the relief you need and then start to apply for disability payments since this disease is preventing you from working for a living.

I know that in the UK fibromyalgia was only recently officially recognised, but that many doctors there have been acknowledging it for years anyway. I though Australia was better than that, but clearly we still have physicians who don't want to know. Unfortunately, in my experience, a lot of doctors know what they know, or what they were taught in medical school, and that's all they are interested in.
 

mariposa

Senior member
Joined
Apr 19, 2013
Messages
459
Diagnosis
00/0000
Country
USA
State
PA
I'm glad to see that others have already suggested seeing a Rheumatologist... that's a good first step. Changing that primary doc may be a good idea, too. Why? Well I happen to know that while some of the "old school docs" may not be totally up to speed with things like fibro, they *are* required (at least here in the US... may be different there) to keep up with CME (continuing medical education) and there are so many credits of it required per year. That's when they're supposed to be learning about things they didn't learn in med school or haven't read about in the journals yet. That not knowing what it is but taking your word for it... not good. If something else that's severe would also come up, this is too scary to think about a doctor not having the necessary knowledge/training to deal with it.

That's not even the worst of what I'm reading, though... was it that same doc who told you CFS "only lasts 7 years?" And... then what? People just wake up one morning at 7 years and 1 day and it's gone like magic? Hmmm....:roll:

In any case, I hope you find a doc who will be able to help you to start feeling better real soon!
 

kmpisces

Distinguished member
Joined
Jun 20, 2013
Messages
151
Diagnosis
00/0000
Country
Uni
State
PA
I am really sorry you have to go through this. What type of doctor do you see or is this your Primary Care Doctor? I know sometimes it is necessary to find a specialist to really get good care.
 

Primmy8

New member
Joined
Jan 20, 2014
Messages
2
Reason
DX FIBRO
Diagnosis
00/0000
Country
AUS
State
NSW
Thank you everyone for y our responses.

I followed your suggestions and found a Rheumatologist who specialises in FM, and only 3 suburbs away.

Today I went to see my own GP, finally back from her extended holiday break, to get my required referral. She then told me she had been reading up on the subject! Miracles of Miracles.

Even had a couple of suggestions re medication approach......but I am to see specialist first. Wonders will never cease (unlike this backpain and IBS).

Here goes...
 

MrLuke

New member
Joined
Feb 21, 2014
Messages
6
Reason
Relative
Diagnosis
00/0000
Country
UK
State
South West
To be honest, FM is an unknown illness. Doctors can only go by research they have heard about, and as it is recent research, they haven't heard about much. They all have different opinions on FM, and it is down to the skill of your doctor to what course you take to get the better of FM. For example, my dad went to a class around other people with the illness, and each of them had different methods, provided by their doctors, in how to cope with FM.
 

LizardKing

Member
Joined
Feb 20, 2014
Messages
14
Reason
DX FIBRO
Diagnosis
01/1994
Country
US
State
SC
The CDC says it can go into remission but that's often later in life.

Funny, I have had it for a bit more than 20 years and at times done a lot of research into FM
and have NEVER, let me repeat it, NEVER EVER heard of ANYONE who has felt fine after FM.

I too have had good days, even weeks, most likely due to knowing what not to do and changing everything in my life to deal with FM, but I have always had FM.
I can easily and quickly cause a flare up the second I forget I have this disease and make myself hurt for days but I have yet to find a way to make the disease go into "remission".

Please correct me if I am wrong and start telling me about all the people in "remission" or "cured" as I'd like to have hope it is possible.
I'd like to have these people tell me they'd be fine if they helped me do some hard yard work for an hour or two.

Sorry, I am not making these comments against you and can believe that the CDC would say something like this but disagree with their statement.
After living with FM for decades one can almost appear normal a lot of the time but so do people with controlled diabetes.
 
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