Nervous about next week's appt with rheumatologist! :(

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Nervous about next week's appt with rheumatologist! :(

Postby Happy1985 » Tue Mar 24, 2015 1:21 pm

Hello!

I'm new to this forum but thought I would write a post voicing my concerns as people seem very kind and helpful here!

After 4 years of lots of symptoms like IBS, Costochondritis + 1 year of pain, my GP has referred me to a rheumatologist as he suspects Fibromyalgia. The pain started as mild last year and has since become more and more disruptive/upsetting.

I'm scared about walking out of the appt with no answers, of facing long term pain without knowing why :(

I've put together a list of all the symptoms so that I don't forget, I can picture my mind going blank! Also a bit scared that if they test my trigger points, of what kind of force they'll use?

Has anyone walked out without any answers? Any feedback/reassurance would be much appreciated, thank you :)
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Re: Nervous about next week's appt with rheumatologist! :(

Postby *Lisa* » Tue Mar 24, 2015 9:57 pm

Hi and welcome,

I would give the list to the consultant so you dont forget anything and also write down what you want to achieve in the appointment also.

If they suggest examining you tell them to be gentle and that your anxious because of how much pain you know it will bring.

The consultant will go through your life and health history to find out a reason why it has been triggered but in some cases they may not be any.

They should also run some bloods or further tests to rule out any other conditions.

Good luck
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: Nervous about next week's appt with rheumatologist! :(

Postby Genevieve489 » Tue Mar 24, 2015 10:34 pm

I second what Lisa has said, it all sounds very much like my own appointment a few weeks ago. Have you also written down a brief medical history? I made a list which included being diagnosed with IBS, reflux and hip bursitis in the past two years.

When all the examinations etc. had been done, I said that one of the reasons my GP had referred me was because he thought I may have fibro and I asked if she agreed with that. There's absolutely nothing wrong with asking. She said that I had signs of fibromyalgia, but she also wanted to see the blood test results. She also referred me to physiotherapy.

I also made sure that I asked to be copied into correspondence to my GP and, when the copy letter came, the blood tests were clear and it stated that her diagnosis was: osteoarthritis and secondary fibromyalgia. I felt pleased that I'd finally got answers for the way I had been feeling.

I hope all goes well for you and do let us know how you get on.
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Re: Nervous about next week's appt with rheumatologist! :(

Postby carolad » Tue Mar 24, 2015 11:43 pm

Genevieve489 wrote:I second what Lisa has said, it all sounds very much like my own appointment a few weeks ago. Have you also written down a brief medical history? I made a list which included being diagnosed with IBS, reflux and hip bursitis in the past two years.

When all the examinations etc. had been done, I said that one of the reasons my GP had referred me was because he thought I may have fibro and I asked if she agreed with that. There's absolutely nothing wrong with asking. She said that I had signs of fibromyalgia, but she also wanted to see the blood test results. She also referred me to physiotherapy.

I also made sure that I asked to be copied into correspondence to my GP and, when the copy letter came, the blood tests were clear and it stated that her diagnosis was: osteoarthritis and secondary fibromyalgia. I felt pleased that I'd finally got answers for the way I had been feeling.

I hope all goes well for you and do let us know how you get on.


That is a brilliant idea about asking to be copied into the correspondence to your GP and also about asking him directly what he thinks the problem is. I wish I had done both when I saw my Rheumatologist. He liked to talk, rather than listen and he kept interrupting as I was trying to tell him about my symptoms :evil: I had about 4 appointments and he ordered various tests, xrays etc in that time. At the end of it, he told me I had scoliosis (which I already knew), that I had Raynaud's Disease (which I already knew) and then waffled on about 'non-restorative sleep', told me to keep taking the Tramadol and Amitriptyline that my GP had prescribed and advised me to take it easy and not push myself too hard. And then he discharged me :roll:

I had to go to my GP to ask exactly what the Rheumatologist had put in his correspondence - that was then I found out that he had given me the 'probable' diagnosis of fibromyalgia! I actually had to get copies of his letters for the Occupational Health Doctor at work and they were the biggest load of rubbish :-| It just proved he hadn't actually listened to me...

I know now I should have been much more direct with him and asked him in very clear terms what he thought was causing my symptoms. I also should have got copies of his letters because then I would have been able to correct his mistakes as we went along!

I don't feel I got any satisfactory answers from my Rheumatologist, I still don't really know what is causing my pain and fatigue. I even have doubts about the fibro diagnosis - and I don't suppose I'll ever know...

So my advice is to be very firm with whoever you see and don't let him fob you off. Good luck :-)
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Re: Nervous about next week's appt with rheumatologist! :(

Postby Happy1985 » Tue Mar 24, 2015 11:54 pm

Thank you so much for your replies :-D I hadn't thought about asking them directly in terms of a diagnosis and being copied into the correspondence would be a great idea! Like a lot of people I've been waiting a long time for this appointment. I was being really patient about it but this week feels like it's taking forever :crazy: thanks again for the advice, I really appreciate it!
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