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who makes the diagnosis?

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5 years 5 months ago #12387 by lubbing5cherubs
lubbing5cherubs created the topic: who makes the diagnosis?
Hi I got probably a silly question, but i see achrodoitis (Sp) CRPS, RSD and fibromyalgia and many other diagnosis for the pain. Who makes the diagnosis? Does the pain clinic tell you what going on or your doctor or what? All i know was hurt my back and it detoriated but extremely frustrated as they keep saying it back related but i have other things going on like forgetfulness and now weakness all down my right side and they keep saying it back related to my herniated disc. I am feeling at such a loss and so desperately want my life back or even just a reason why i hurt, does that sound silly? I apologies if it does but it truly how i feel.
again thanks for answering my questions. This journey still new. I was a person never went near doctors and now they all know my name and my kids names. :/
bye Toni

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5 years 5 months ago #12391 by Mary
Mary replied the topic: Re: who makes the diagnosis?
Hi Toni,

I feel for what you are going through. It reminds me of exactly How I felt in the early days. The fact is that they quite often just don't know exactly what is causing pain. You may have herniated discs, so they put it down to that, but another person may have even worse discs and no pain at all. It is all a bit of a mystery. Sometimes, they can never put a label on it, so that is where pain management/self-management techniques become important.

I have never been given any real diagnosis. The closest I got was "some kind of spinal neuropathy". People without chronic conditions/chronic pain often wonder why people are happy if they actually get a diagnosis. It's not that they are "happy" as such, but relieved to be able to put a name to it. I also have a vague problem with a type of white blood cell that goes out of control. I have to take medication for that and they have no idea what causes that either. I am a true medical mystery - along with a lot of others I think.

Quite often the diagnosis for the types of conditions that you are referring to are made by rheumatologists. Sometimes a good specialist physician can do it, depending on their experience. The best thing to do is perhaps to have another chat with your GP about all of your options.

Mary

Not every day is a good day, but there is good in every day.

"“It’s delightful when your imaginations come true, isn’t it?” ― L.M. Montgomery, Anne of Green Gables
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5 years 5 months ago #12393 by grappers
grappers replied the topic: Re: who makes the diagnosis?
Toni as I have said before I have had 2 failed back surgeries, failed because they still have not cured the pain, what we are dealing with is nerve damage, and being in the back it not only affects the site of the injury as all your bodies nerves run down the spinal canal. I have not received a diagnoses of what my condition is, all I know is I had an accident and damaged my spine and I am being treated by a Chronic Pain Unit at my local Public Hospital for Chronic Pain.
Do I need a diagnoses to put my mind at rest, no I don't, the big difference is being believed that you are in pain and getting the right types of treatment and support, learning to live and accept you have pain is the biggest hurdle you have to over come, does this mean you have to give up on life, no way. With the right mind set and treatment we can still live a some what normal life, with it's ups and downs. Having a good Pain Management Team and a local GP behind you is what you must seek, and yes they become like family.

Don

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5 years 5 months ago #12399 by TheresaD71
TheresaD71 replied the topic: Re: who makes the diagnosis?
For me a diagnosis meant that 7 years of persistent Migraines finally makes sense. I have a name for what is wrong and now I may "finallly" get treated for it. That is all it is to me, proof that I am not crazy, I hurt for a reason. Its not something I just made up.

T
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5 years 5 months ago #12401 by grappers
grappers replied the topic: Re: who makes the diagnosis?
For those who have no apparent reason to explain why they are in pain, then yes I agree it would be good to have some sort of diagnoses, where as mine was an injury that showed up on X-rays and MRI's, they repaired the damage but could not explain the ongoing pain. That's one common theme amongst all CPer's, being told it is all in your head, one reason why we push pain clinics so much for they know it's not in your head it's real and debilitating, but you are taught to control pain using your brain.

Don

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5 years 5 months ago #12403 by Peter
Peter replied the topic: Re: who makes the diagnosis?
Toni, thanks for starting this thread and asking these questions, because I am certain we have hundreds of anonymous readers who feel exactly as you do and have the same questions.
And boy, isn't not knowing so hard and often times frightening. I remember days like that too, where I wondered if I was dying. But I soon got passed it and stopped worrying.

Some of us need a diagnosis for peace of mind and some of us don't. Personally for me, I'm not really fussed one way or the other. I pretty much know my body fairly well, which has been through study of my illness, taking note of what goes on with me, and for the fact I have had a lifetime to collect this information.

Don mentioned the pain clinic. This is your best bet to find many of the answers you seek. Try asking your GP for a referral to your local pain clinic, but ask if the pain clinic is a "Multi-Disciplinary Team", because if it is, then you are on a winner, because they will be using the up to date methodology and approach to teaching you self-management skills, which is going to be your ticket to a 'reasonable' standard of living in the future.
Try to not worry too much, because the stress of that alone can make you more ill.

Anyway, give the pain clinic a try and let us know how you get on. Above all, if you feel down at anytime and need to talk to someone, always come back here and let it all go. There will always be someone around who will answer you and try to help you see through the fog.


Peter

I wish the ring (this Chronic Pain) had never come to me. I wish none of this had happened. (Frodo Baggins)

So do all who live to see such times. But that is not for them to decide. All we have to decide, is what to do with the time that is given to us. (Gandalf the Grey)
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