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Date: 17.05.2011
From: Francesca

Subject: How accurate is your rheumatologist

Hi everyone. I have just come back from my rheumatology appointment and I am feeling quite upset. A few months ago I was diagnosed with psoriatic arthritis. I tried Plaquenil and had no effect and then had to stop Sulfasazine because of side effects. I expected to be tried on another DMARD today but was told that my PsA is mild and that I have secondary Fibromialgia which is responsible for most of my pain. I am not sure whether he really listened to me and he seemed to reach this conclusion quite soon into the consultation based on feeling tired all the time (I thought this was normal in auto immune diseases) and on some tender points which were more consistent with Fibromialgia. He also told me that I have Osteo in both knees and that I need to lose weight urgently. He wants me to consider bariatric surgery. This has given me a lot to think about and come as quite a shock. I was expecting to be given some new meds but all I have now in pain killers. He said that immunosupressants won't really help me. I am gutted, it seems there is nothing more they can do to help me. I know I have to help myself but it is so hard when I feel so awful.

I have been going to rheumatology for a year now and was first treated for rheumatoid then PsA and now I'm not getting treated for arthritis at all. Has anyone else had these changes in diagnosis? It makes it hard to trust my consultant.
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Date: 17.05.2011
From: bsk

Subject: Re: How accurate is your rheumatologist

hi Francesca, sounds like a devastating appointment. Give yourself a few days to digest what he said then maybe talk to your GP as they may throw some light on his decisions. Of course, you can always ask for a second opinion.

I think it is positive that you don't have to take any more Dmards. Methotrexate is not a nice drug, it made me feel even more exhausted and you have to be quite bad to get on the anti tnfs. They also make me feel very tired even though they are supposed to have the opposite effect! Did you discuss using anti inflammatory drugs for the pain? Some people I know take only them and nothing else.

I don't know much about Fibro except it is very painful. I hope you get some relief from it.
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Date: 17.05.2011
From: Francesca

Subject: Re: How accurate is your rheumatologist

Thanks, yes devastating to find out I have not one condition but 3! I find it strange that there is not one diagnosis that encompasses everything but maybe thats common. I do take Naproxen (anti inflammatory. I can't work without it and I have a full time job I am trying to hold down. I'm not sorry I won't be taking Methotrexate! That is the good news. Thanks for your reply. I hope you feel better soon.
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Date: 17.05.2011
From: KayJay

Subject: Re: How accurate is your rheumatologist

Francesca I had been going to the Rhuemies for about 2 years when I was told I had Inflammatory Arthritis. I was put on Plaquenil and was taking that for 10 months with no improvement so the Rhuemie sent me for an Isotope scan. That came back negative then he said I was mis diagnosed with IA and that I had Fibromyalgia and Osteoarthritis [ no news to me I had already been diagnosed with Fibro by my Gp and have suffered with Osteo for years !! ]. He promply told me there was nothing else I could take for Fibro apart from the Amytriptyline the GP had given me. I was desperate as I felt like I had ran a marathon every day and hurt all over [ difficult to say where it DIDN'T hurt !! ]. I was so depressed feeling like this that I saw my GP and reported what the Rhuemie had told me that there was nothing else I could take. She said YES THERE IS !! Gabapentin - and I've been on this med now for about 3 months and I feel 50% better than I did when I walked out of the Rhuematology Dept thinking " will I have to live the rest of my life feeling this bad ? ".

So don't give up - see your GP and ask about this med see what they say. Good Luck.
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Date: 18.05.2011
From: Lynn B

Subject: Re: How accurate is your rheumatologist

Hi Francesca, I agree with kayjay, my Daughter takes Gabapentin for fibro and she said till he put her on that med, she never thought she would feel any better, but she did, she said she feels so much better on it, and now she has a better quality of life. take care x
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Date: 18.05.2011
From: Maz

Subject: Re: How accurate is your rheumatologist

The thing everyone has to remember is that a doctor/specialist diagnoses a particular disease from us the patients either displaying enough symptoms or telling your doctor about a whole combination of symptoms, it is entirely possible you don't have PA or that you may have a little bit of PA meaning there aren't enough symptoms to conclusively diagnose PA but some symptoms appear to be PA.

As for fibro, they are right there isn't much you can do for fibro other than by trial & error see what works for you & what doesn't. Gabapentin is used by many people who have fibro & they get relief from using that particular drug. Unfortunately it's all a bit hit & miss, no one thing will totally take away the pain, some things will work some things won't.

Try to keep your spirits up though & don't project into the future too much eg, as you said, "will I have to live the rest of my life feeling this bad?" the answer is NO you don't, all you need to do is find what meds work for you!

It's always easier if we have a disease than can conclusively be treated with a particular medication, unfortunately AI diseases are not & neither are diseases like fibro.

I am sure though that you will find one that works, it just takes a little while to sort it out.

Good luck,
Maz
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Date: 18.05.2011
From: Maz

Subject: Re: How accurate is your rheumatologist

Forgot to say my friend has fibro & has been using Myalgia-X which she maintains stops the pain dead in it's tracks !!
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Date: 19.05.2011
From: KayJay

Subject: Re: How accurate is your rheumatologist

Maz what depressed me so much was the fact that the Rhuemie sent me away from his Surgery saying that there were no other meds for Fibro other than Amytriptyline !! This was from a very well respected and established Rhuematologist!! I still don't understand why he said that. Maybe he was having a bad day and couldn't be bothered with trying me on anything else. Luckily I have a Fab GP who was willing to help me.

Never heard of Myalgia-X but the Gabapentin works for me like you say it's a case of trial and error fortunately my 2nd Fibro med works for me.
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Date: 19.05.2011
From: Francesca

Subject: Re: How accurate is your rheumatologist

Thanks so much for sharing your story with me JayKay. I am seeing my GP on Monday and I plan to ask for Gabapentin or Pregabelin. Its great to hear it worked for you as this will give me hope. Its also a relief to know that other rheumatologists keep changing their minds. I really relate to what you said about the desperation that no treatment means no improvement and having to live the rest of my life in pain. I wish my consultant could live in my body for a day to know how that feels.
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Date: 19.05.2011
From: Francesca

Subject: Re: How accurate is your rheumatologist

Thanks for that Lynn! I feel more hopeful already. How long did it take to help? This sounds encouraging :)Thanks guys x
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Date: 19.05.2011
From: Francesca

Subject: Re: How accurate is your rheumatologist

Thanks for your thoughts too Maz, very sensible and I know my expectations are high. I don't feel my consultant took time to listen to me and he hadn't read my notes which I do feel is unacceptable but I know I also have to be responsibile for communicating clearly. KayJay my consultant was pretty unhelpful. I was the last patient of the day and the nurse said it had been really busy. They are only human but when they only see me every 6 months I expect some level of service when I am there.
I have never heard of Myalgia-X. I will ask my GP about it. THANKS
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Date: 20.05.2011
From: Maz

Subject: Re: How accurate is your rheumatologist

Glad I could help a little.

Sorry I should have explained, Myalgia-X is a 'natural' product not a med (google it up)so you don't need a script & from my friend who has fibro & has suffered with all the usual symptoms & extreme pain swears by it, she tells me it takes about 1-2 days to kick in but when it does absolute relief!
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Date: 20.05.2011
From: Lee

Subject: Re: How accurate is your rheumatologist

Im not convinced my Rhumy knows what he is doing at York Hospital as it seems my Dr has done a lot more to help my condition and pain.

My Dr said it sounds nerve related as was burning so hence the tramadol and naproxen which have worked amazing for me majority of the time.

My fingers still go numb after sleeping but can shake that off.

The Rhumy hasnt addressed pain meds or nerve tests or even increasing the sulphasalazine.

He just seems contemp for me to continue and to try and keep jabbing my arse cheek with cortizone.

Im waiting for my next appointment as he said 10 weeks as he was ofd on holiday so am unsure where to go or what I am entitled to demand from my Rhumy if he is so set on what he thinks is right.
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Date: 22.05.2011
From: Francesca

Subject: Re: How accurate is your rheumatologist

Hello Lee
Some phenomenon seems to overcome me when I see my consultant rheumatologist. I am normal assertive person in everyday life and then I become tounge tied and meek when I see him. I dont find it easy to explain my symptoms either because they vary and where it hurts most can be different each time. I have resolved never to go on my own any more. My Mum can be a rotweiller in those situations and my husband is supportive so I will take on of them to help me next time. I take tramadol and Naproxen too. I find they help quite a bit. I had a sense that my rheumy was irritated with me, perhaps because my GP took me off my sulfasalazine due to side effects and asked for me to have an appointment earlier than 6 months. I actually work in the NHS as a psychotherapist and I find it shocking that a fellow health professional (my rheumy) didn't read patient notes or explain my diagnosis or give me choices about my medication.
Really good luck to you Lee. Hope some of that helps.
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Date: 22.05.2011
From: Lynn B

Subject: Re: How accurate is your rheumatologist

I kind of get the feeling from going through some of these posts, there are a lot of rheumatologists who have no consideration for their patients at all!!They seem to lack communication skills, ie explaining medication, explaining the proper diagnosis, treatment, and pain relief. or am I just being picky?? Take care all x
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