Disappointed with the doctor!

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Disappointed with the doctor!

Postby SopsIsTops88 » Mon Oct 21, 2013 8:55 pm

Hi everyone,

I just wanted to post this up to see who else has the same problems as me in getting health professionals to believe that you are living in severe pain everyday.

Today I went to see my normal GP. I'm currently waiting to see the Rheumatologist which he referred me to with the hope that I will be finally diagnosed with Fibromyalgia. The GP said the last time I saw him that he does believe that I have Fibro but he can't diagnose it, hence why he referred me to a specialist.

I had to go back to see my GP as I have run out of pain meds and they won't put them on repeat until I am diagnosed. I wanted to ask him a few questions too about the Rheumatologist appointment, as I'm really scared that they won't believe me and send me for further tests. He said that he wasn't sure if they could diagnose me there and then like I had hoped and he confirmed my worst fear that they may send me for more tests. I have been tested for everything under the sun for well over a year and feel like I'm just going round in circles! I then said how bad my symptoms are on a daily basis and he said that there were other conditions which are similar to Fibro that I could have and that he can't rule them out. I said that was fair enough, but I have 99.9% of all the symptoms so I don't believe that to be true. He then went on to say that I could just be depressed and anxious, and that my symptoms could be psychological! I am so fed up of not being listened to! The only reason why I get down is because of the illness and the fact I feel so ill everyday. I don't know how he can go from being supportive one week to then changing his mind the next!

It's not the only doctor I've had at the surgery who has put my symptoms down to depression and anxiety, maybe I should change doctors?

Does anyone else have similar experiences to me with the doctors not believing you?

Now I'm even more worried about my specialist appointment :crazy:

If anyone had some advice on how to deal with this then I'd really appreciate it!

Thanks,

Sophie :mrgreen:
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Re: Disappointed with the doctor!

Postby whoami » Mon Oct 21, 2013 10:00 pm

Sophie, hi! I have been dealing with fibro for 24 years and can relate to your frustration..

The first while dealing with fibro, Dr's and getting a diagnosis has to be the hardest most frustrating time. Sophie, your Dr is right about wanting to rule out other causes for your symptoms. There are many other serious diseases that share symptoms. I am glad to hear he is ruling things out. It is all part of the diagnosis . Most of us have gone through the ordeal.

The Dr saying that you could be depressed is true. Depression goes with fibro. Sophie that does not mean he does not believe you and your symptoms. It is that depression that can make symptoms worse so it should be addressed. I saw a psychologist for a while and I am sure others have. It was to deal with all of this. No wonder we are depressed and anxious with all the symptoms.

Sophie, make sure you get the appointment with the rheumatologist or a visit to a pain clinic. They will diagnose you.

Don't give up on your Dr yet. He is following the course to a diagnosis.

Getting a diagnosis is so important to us. The Dr may already feel it is fibro and start to treat us sometimes for fibro. We need the diagnosis, diagnosis of anything. Fibro or not, we need one. Somehow it validates our symptoms, it makes us feel that we are believed. My Dr knew it was fibro but had someone else officially diagnose me...I cried.

Sophie, hang in there. I know it is tough. I don't believe your Dr doesn't believe you or you are making tbings up. If he wants to treat anxiety and depression great, it is likely there but make sure you are seen by someone who can give you a diagnosis for "all" your symptoms.

Lorraine x
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Re: Disappointed with the doctor!

Postby FluppyPuffy » Mon Oct 21, 2013 10:46 pm

Reading about your appt Sophie, I can understand why it's left you feeling so disappointed. On the flip side tho, your GP does believe that you have FM, and is wanting it to be confirmed by the rheumy, which is the usual sort of route taken to get some answers.

Whilst a good number of people are given a dx when they see the rheumy, there are also a number who, for a number of reasons, cannot be given a dx at that appt. How it will all pan out for you will depend on a number of factors. These can incl things like the amount of info/notes that has been sent for your referral. If there is a decent amount of detail relating to tests and their results, any scans etc you have had done, info from other people you may have seen over the time you have been experiencing symptoms et al, then the rheumy may give you a dx. However, rheumies tend to work in their own ways, and some of them like to run their own tests etc before giving a definite dx, which would mean another appt is necessary for results and answers. It would be nice if they would all follow a set path to dx~ing, but unfortunately they like to play by their rules, which may not be the ones we are hoping for.

What your GP has said about depression and anxiety being potential causes of symptoms is right for some people, same with the other conditions he referred to. Depression and anxiety can appear physically with very similar symptoms to FM, which is why treating those conditions is often tried as improvements in the levels of depression and anxiety can bring about an improvement in physical symptoms for some. The other conditions he referred to can incl the the likes of Lupus and Rheumatoid Arthritis. So if there was something in previous tests results that might be an indicator for one of these other possibilities, then that could be a another factor as to why you may be sent for additional tests etc. There isn't an actual blood test, type of scan or x~ray used at the moment that can physically show up FM. Diagnosis tends to be made based on all other possibilities being investigated and ruled out, which is why so many tests are done. It sounds like your GP is being thorough before acknowledging a definite dx, which is what everyone wants from a GP tbh, as there ate those who are completely dismissive of FM being a bona~fide condition.

Try not to worry about what could happen during your appt as it will only add to how you're feeling (I do know this is far easier said than done.) If you're wanting a more detailed idea of what the appt could entail, you could try contacting the dept and see if anyone can give you a clearer idea of what might take place.
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Re: Disappointed with the doctor!

Postby helen.whittaker.125 » Tue Oct 22, 2013 8:50 am

Hang in there, your dr sounds like he just needs confirmation, unfortunately it's a process of illumination to get diagnosed, you are getting towards a diagnosis fast, it's taken 12 years for me to get one, but more drs are accepting of fibro now unlike when I first presented with the early symptoms, speak to your rheumatologist. The last one I saw sent me back to the dr to find out if it was fibro as she suspected it was , and several pushes on various points on my body and a score of 16 out of 18 (because my knees could be from the ostiocondritus I have) I was given the diagnosis of fibro. I wish it was arthritis then at least there would be a cure :(. Good luck with your appointment xx


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Re: Disappointed with the doctor!

Postby macca » Tue Oct 22, 2013 12:19 pm

Maybe its worth coming at this from a different direction. My wife was referred to a Rheumatologist and he did not diagnose Fibro and instead tested her for Lupus. 2 days later she had a consultation with a Consultant in Pain Medicine and Anesthesia who without question diagnosed Fibro. Then 6 months later when she went back to the same Rheumatologist that hadn't diagnosed her, he checked her tender points and got indications on 15 out of 18 markers. Yes its a fluctuating condition but keep chipping away and consider a plan b if need be.

Good luck.
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Re: Disappointed with the doctor!

Postby SopsIsTops88 » Tue Oct 22, 2013 1:46 pm

Thank you everyone for their detailed responses, they really do help and make me feel a lot better about my current situation. It's nice to know that it's very similar to other people stories about trying to get diagnosed.

I've been tested for pretty much everything possible and have had lots of scans and MRIs which all came back clear over the past 2 years (symptoms have been there for nearly 9 years). I guess it is right for my doc to mention these other things, but when you really feel that you need a diagnosis, it just gets so frustrating and you feel like no one will listen. I understand that these conditions are similar and can cross over into each other but I really feel in my heart that it's fibro.

I think I only get down when I can't do things I used to be able to, or when I'm having a bad day with the symptoms. Other than that I'm a really bright and positive person!

There's not too much longer to go until my specialist appointment, so I will be able to give you an update on how it goes. I guess I will have to prepare myself for further testing if they want to - I'm just fed up with being poked and proded by the doctors!

Thanks again :-o

Hope you all have a great day.

Sophie x
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Re: Disappointed with the doctor!

Postby whoami » Tue Oct 22, 2013 7:39 pm

Sophie...I really understand how you need a diagnosis. We become so desperate. I think until we get a diagnosis we will not be happy. We become more obsessed with a diagnosis than what that diagnosis will be.

I remember coming home from Dr after Dr being so frustrated, disappointed and insecure. I began to think that all these tests that came back negative only confirmed that I was crazy. That there really wasn't anything wrong except for my brain telling me different.

I needed to be told something was wrong...anything. I didn't care what anyone called it.

When I finally heard from a Dr the words....I know what is wrong with you, I cried and cried. He hugged me and said he understood. He has fibromyalgia, who would have thought the Dr would have it. So after a few minutes he said...do you want to know what it is called. I looked stunned and said yes! I had been so overwhelmed that there was really something wrong I hadn't cared what it was,LOL

He proceeded to tell me I have fibromyalgia. Then said...I have good news and bad.
Good news....you have a genuine illness, I can help you deal with it.
Bad news......you are going to live a painfully long life.

And so the journey began!

Sophie, hang in there. A diagnosis will come. If not fibro something else for sure. Once that diagnosis arrives the poking and prodding will stop. A new journey will begin.

Lorraine x
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Re: Disappointed with the doctor!

Postby pops » Tue Oct 22, 2013 8:08 pm

Sorry to hear about your gp. I had the same gp for over 20 years. He was great then he retired and my new gp is just as good. He put me on pregabalin which has helped me so much. I wish everyone was as fortunate as me.

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Re: Disappointed with the doctor!

Postby SopsIsTops88 » Wed Oct 23, 2013 8:54 pm

whoami wrote:Sophie...I really understand how you need a diagnosis. We become so desperate. I think until we get a diagnosis we will not be happy. We become more obsessed with a diagnosis than what that diagnosis will be.

I remember coming home from Dr after Dr being so frustrated, disappointed and insecure. I began to think that all these tests that came back negative only confirmed that I was crazy. That there really wasn't anything wrong except for my brain telling me different.

I needed to be told something was wrong...anything. I didn't care what anyone called it.

When I finally heard from a Dr the words....I know what is wrong with you, I cried and cried. He hugged me and said he understood. He has fibromyalgia, who would have thought the Dr would have it. So after a few minutes he said...do you want to know what it is called. I looked stunned and said yes! I had been so overwhelmed that there was really something wrong I hadn't cared what it was,LOL

He proceeded to tell me I have fibromyalgia. Then said...I have good news and bad.
Good news....you have a genuine illness, I can help you deal with it.
Bad news......you are going to live a painfully long life.

And so the journey began!

Sophie, hang in there. A diagnosis will come. If not fibro something else for sure. Once that diagnosis arrives the poking and prodding will stop. A new journey will begin.

Lorraine x


Thank you Lorraine for your message, you've hit the nail right on the head!

I think when I finally get a diagnosis I will just burst into tears and cry my eyes out! I'm sure most people feel the same when dealing with this kind of illness. As it affects me everyday it's so hard not to focus on it and I wish I had a name to label my symptoms with.

I know it won't change anything, like you said the doctors told you the good and bad news! I know that I'll have it forever and that I'll have to adjust my life accordingly. But It's just knowing that I'm not mad, and moving forward with my life in a positive way and learning how to deal with this illness.

I'll try to wait patiently until my specialist appointment, I'm not going to lie though - I'm counting down the days until I see them! At least it's one step further to having some answers.

Thanks again to everyone and their support, it's making life just a little bit easier to cope with!


Sophie x :mrgreen:
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Re: Disappointed with the doctor!

Postby whoami » Wed Oct 23, 2013 9:24 pm

Sophie....You have just made one huge step on your journey.

Lorraine x
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Re: Disappointed with the doctor!

Postby pops » Thu Oct 24, 2013 11:46 am

Sofie hang on in there. Hopefully you will get a doctor that will tell you what you have and give you the appropriate meds. Thinking of you. Take care.xx
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