Rheumatologist Visit

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Rheumatologist Visit

Postby CurlyLou » Wed Jun 12, 2013 1:30 pm

I was diagnosed with fibromyalgia last month and before leaving the hospital, the rheumatologist told me he would like to do some blood tests for Lupus. Even though he gave the diagnosis, he was very vague with information. He didn't advise what medication would be useful, how best to manage the condition and didn't even tell me if I would receive a follow up appointment!!
I'm guessing that the results must be negative otherwise they would have contacted me wouldn't they??? I've been in so much pain lately and unbelieveably tired. Do i go back to my own gp or do I contact the rheumatologist?
I've since been for oral surgery (biopsy) as i also have a condition called Oral Lichen Planus, which is an auto-immune disorder. This hospital have been great and i have a follow up appointment at the end of this month. I will ask when i go back if they are able to advise if both are linked in anyway.
Just wondered if anyone else has this condition as well as fibro?

I'm new on here btw, so sorry if my post seems a bit garbled. Just trying to fit everything in without making the post too long :-)

CurlyLou x
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Re: Rheumatologist Visit

Postby FluppyPuffy » Wed Jun 12, 2013 2:00 pm

:welcome: to our little escape from it all CurlyLou :bear-dancing: :bear-dancing: :bear-dancing:

Unfortunately some rheumies can be somewhat vague when we have to see them :facepalm: :facepalm: :facepalm: With what you have said, it could suggest that you have been discharged back into the care of your GP, but to be sure, you could contact the admin people that deal with your rheumy and ask what has been written in your notes. U fortunately, it's not unusual for someone to see a rheumy, be told they have FM then be sent on their way without any suggestions/advice about meds etc :( :( :( :(

With how you're feeling at the moment, going to see your GP would probably be the best option. This linky tells you about some of the meds used in managing FM http://www.nhs.uk/Conditions/Fibromyalg ... tment.aspx If you have a bit of a looky, then when you see your GP, you will have an idea of the different types that can be used and how they might be able to help.

I haven't heard about a link between FM and Oral Lichen Planus, but that doesn't mean that there isn't some sort of connection. If you want to see if there are any other mentions of it, you could use the search box in the top right corner of each page. If there are any mentions, it should bring them up for you.

And there's no need to worry about things being too long or sounding a bit garbled. We all understand what this condition can put us thru, and have been in a similar place to where you are at the moment.....recently dx'd and wondering about all sorts of things and how it might all have an effect on us. Even with the most jumbled of posts, we still seem to be able to understand what we are saying to each other :clap: :clap: :clap: :clap: :clap:

Hopefully someone will :penguin: :penguin: :penguin: :penguin: :penguin: :penguin: along soon who can help you with your wonderings about the possibility of there being a connection :fingerscrossed: :fingerscrossed: :fingerscrossed: :fingerscrossed: Anything else you're wondering about, just ask about it and we'll try to help you with it :cow-wave: :cow-wave: :cow-wave: :cow-wave: :cow-wave: :cow-wave: :cow-wave:
As a Public Moderator 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.

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Re: Rheumatologist Visit

Postby moomoos » Wed Jun 12, 2013 3:59 pm

Hi, I just wanted to tell you that I went to see my Rheumatologist quite recently too and she gave me a definite FM diagnosis.

Along with that she told me she also wanted to do one last blood test for lupus. I'v not had it done yet as I lost the slip of paper she gave me, forgot where I put it :roll: . Have just had a replacement sent in the post today from her secretary, I had to ring her for it. So I have to arrange that blood test to be done at my GP's office.

My Rheumatologist explained all about FM to me and gave me a really good booklet to read about it. She ordered what she called a 'Shopping List' for me, regards treatment for my FM and she told me what the list consisted of... which was... Physiotherapy, Hydrotherapy, referral to a Clinical Psychologist with a view to sorting out stress in my life, and she asked my GP to sort out other outstanding worries I have, which he has now done and I have referrals to other departments in the hospital. She also told me she was going to write my GP a long letter about her consultation with me and that she would send me a copy of that letter.

She was absolutely lovely and very very thorough and I was in her office for an hour.

I think you could ring your Rheumatologists' secretary if you are left wondering as to what happens next......they dont mind you doing that at all and they are very nice (well they are here, perhaps I've just been very lucky).

I'd just like to say.... I've opted to not have any medication for my FM as I'm scared stiff of medication and side effects and so I am trying to cope without, and hope that exercise via physio and hydro will help me to cope better in the future, and so she didnt go through the different medications I could take to help me, though, my GP did go thru them with me when I had finished all my blood tests which all came back clear, just before Xmas last year and they thought it was FM, but couldnt diagnose themselves.... it had to come from the Rheumatologist.

I hope you get some clear answers of what to do next cos I know how scarey it can feel not knowing. xx
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