Rheumatologist again?

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Rheumatologist again?

Postby AlisonP » Thu May 22, 2014 12:53 pm

Pre diagnosis my earliest symptoms were very much like RA, I went off to see a consultant rheumatologist who did enough x-rays for me to have a complete skeleton ready for the following Halloween! I had lots of blood tests etc etc and I even had a Carpel Tunnel operation! Nothing to do with Rheumatoid Arthritis showed up in my bloods but plenty of Osteoarthritis on the x-rays which was no surprise. This guy never considered Fibromyalgia and recommended I continue to test for RA.

Having more recently experienced a fairly extreme episode of 'Fibrofog' the puzzle pieces finally fell into place and Fibro was diagnosed. Now I understand why recovery from the tunnel op was such a nightmare! :roll:

A brief spell on Amitriptyline gained me nothing more than two dress sizes - so I dumped that in consideration that carrying extra weight on arthritic knees could be a tad foolhardy. I told my GP I would prefer to tackle the sleep dep, preferably not by taking pills, and he said he would write me an open referral. I got it in the post a couple of days ago.... it's to see a rheumatologist again!

Not sure what I would gain from it but I would be interested to know what I could expect now that I have a Fibro diagnosis. Is it worth following up or should I go back and remind my GP of our conversation. I know on the very rare occasions when I get decent sleep I feel SO much better for the following day. Anyone have any views on this?
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Re: Rheumatologist again?

Postby FluppyPuffy » Thu May 22, 2014 2:20 pm

I think it would depend on which Rheumatologist you were to see. Some Rheumys, even tho FM comes under their remit, are reluctant to acknowledge the condition/dislike giving patients it as a dx. Others may poke and prod you, say that it's FM, then shuffle you off thru the door and back to your GP, whilst another may ask what you' are doing back there as you have already been dx'd. Now and again tho, there are the occasional ones who are helpful, even interested. They may suggest/recommend things like meds, treatments etc that could be beneficial, and ask you to come back in a number of months time to see how things are going.

If it could be guaranteed that you would be seeing a helpful one, then it would be worth following it up. This doesn't tend to be the case tho, if anything it's a lucky dip, maybe even an unlucky dip, as to who you might end up seeing.

If there are questions that you haven't been able to find answers to, then going back might help with that, but if you have found out a heck of a lot more about the condition by doing your own research, then a follow~up might be completely pointless.

If I were to find myself in a similar situation, I'd go back to see my GP, show him what I have received and remind him of what was originally said and see what he had to say about it. If, in the future, you were to find that things are changing, just don't feel quite right, or there could be another problem/issue starting to raise its ugly little head, then you could probably be referred back to the Rheumy if necessary, or to another appropriate specialist if needed.
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Re: Rheumatologist again?

Postby AlisonP » Fri May 23, 2014 12:17 am

Hmm, thanks for that, it describes my expectations perfectly, which means maybe I'm not as cynical as I thought. For sure my gut feeling is to go back to my GP and have a bit of a firm chat about things!
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