Rheumatologist Appointment TOMORROW

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Rheumatologist Appointment TOMORROW

Postby Woofwoof » Mon Aug 06, 2012 12:17 pm

So I've got my rheumatologist appointment tomorrow - it was put back 3 weeks to 28th August and late last week I got a phone call bringing it forward again!!

I've not posted on here for a few weeks and thought I'd ask for some last minute help/advice. For those not familiar with my previous posts I suffer from CFS (17 years) but have been referred to a rheumatologist to be checked out for fibromyalgia.

I've no idea what to expect tomorrow, what happens, what I'll be asked, etc - anything I should know?

Also, there's a bit of an issue - when I was referred my pain and fatigue were nothing short of HORRENDOUS!! But at the mo my pain is like 10-20% of what it was then and I think that's going to be the first thing that leaves my lips tomorrow!! I know I was obviously mid-flare when I was referred, but I'm just nervous that not being in all that pain now I may get a false diagnosis - and also I feel a bit of a fraud going tomorrow, as I'd never have asked to be referred if my pain levels were as low as they are now. But that's not to say I could have another flare around the corner... :-?

I take NSAIDs daily to take the edge off the pain, but I'm not going to take any tomorrow so that they don't mask any pain, etc.

However, certain pains ARE constant if less pronounced - hips, feet, shoulders, neck and back - including alot of stiffness in my spine.

So. Help!! Any advice/observations would be much appreciated. :-)
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Re: Rheumatologist Appointment TOMORROW

Postby FluppyPuffy » Mon Aug 06, 2012 3:35 pm

All appts all seem to be very different WoofWoof, it all comes down to who you see unfortunately :facepalm: :facepalm: :facepalm:

You may have the Tender Point Check carried out which is where the the rheumy will check out certain points around your body. Gentle pressure is applied to each point and depending on how you react, it can be used to determine if it is FM. It'd not a definitive test tho, and whilst some use it as an indicator and/or work on the basis that a minimum number of points are needed for an FM dx, others may just check them, but not use it as an indiacator.

You may need to have additional tests/scans if the rheumy feels they are necessary and/or want to see you again. If you can, have someone accompany you, it can help with remembering what was said, as well as being a bit of moral support for you. If you've been doing something like a symptom diary, then take it with you as it can be referred to if necessary. Write down anything you want to know about or want to ask and take it with you, again to help with remembering things.

The rheumy may refer you on for other treatments, provide you with or contact your GP to suggest that different meds be tried or you could be discharged straight back into your GPs care.

I'm sure someone else will be along with some other advice, I'm going a bit foggy now as the effects of a manic weekend have now decided to catch up with me :facepalm: :facepalm: :facepalm: Hopefully you'll get some answers and know which way things are going :fingerscrossed: :fingerscrossed: :fingerscrossed:
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Re: Rheumatologist Appointment TOMORROW

Postby Woofwoof » Thu Aug 09, 2012 11:39 am

Thanks for your reply FluffyPuppy. :-D

Sooo - after 1 and a half hours of being grilled with what seemed like a million questions and a physical examination they think I don't have fibromyalgia and my pain, etc is as a result of CFS. I had kind of guessed this would be the case, what with my symptoms being so mild at the mo - when I was referred I was in agony all day everyday!! I have been referred for physio and also to a podiatrist (for foot pain). I've also have bloods taken for an A-Z of tests, including inflammatory markers.

I know some of you guys have had to have repeated rheumatologist appointments to get a positive diagnosis. Any opinions on my case?

I do feel I have alot of unanswered questions, and also concerns about the diagnosis. I've been taking several supplements recently (multivit, flaxseed oil, green supplement) and I think they have eased my pain alot - I say that because if I go a couple of days without my pain starts to worsen considerably. I'm just wondering if taking these supplements has led to a wrong diagnosis? Of course, it could be that I don't have fibromyalgia - but if that's the case why have I never suffered all this pain for the 17 years I've been ill?

The evening of the appointment and the day after my pain and stiffness was sooo much worse with being manipulated, but it's beginning to ease - however my hips are still bad. :-?

So, that's where I'm up to. I guess on the surface it's a good thing I got a negative diagnosis, but if the pain flares again I'm left in a situation where I don't have any effective meds too help me cope - that's the main thing I wanted from this whole scenario.

Any comments or advice would be much appreciated. :-D
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Re: Rheumatologist Appointment TOMORROW

Postby FluppyPuffy » Thu Aug 09, 2012 1:46 pm

FM and CFS/ME are rather interlinked with many overlapping symptoms and similarities. Some medical bods treat them as 2 different illnesses, whereas some treat them as different ends of one condition :shock: :shock: Like all things related to these problems, nothing is ever straight forward :facepalm: :facepalm: :facepalm:

Very, very generally, if pain is the more prominent, then an FM dx tends to be given. If fatigue is the more prominent symptom, then a CFS/ME dx tends to be the one given :shock: :shock: :shock: Just to add another twist to it tho, it's possible to be dx'd with both :crazy: :crazy: :crazy:

Do you have an appt to see the rheumy again, or have you been discharged back into the care of your GP??? With these questions and concerns being unanswered, maybe going back to your GP would be an idea anyway, give you the chance to talk thru the different things and see what your GP suggests for your next step :-? :-? :-?

If it is CFS/ME rather than FM that you have, the treatments are very similar to those for FM, so you'd be given very similar, if not the same meds as you would have for FM, which should hopefully mean you don't find yourself in a position without effective meds :fingerscrossed: :fingerscrossed: :fingerscrossed: With how you felt after the appt, that is typical of what a lot of us also felt. It seems that once an appt is over/finished, there may be a moment of relief then the other symptoms come steaming back in as if to remind us that altho we now have a name for things, it won't change how its going to behave :waiting: :waiting:
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Re: Rheumatologist Appointment TOMORROW

Postby denys » Thu Aug 09, 2012 7:00 pm

Sorry you still feel stuck, go and talk to your doc and then if you arent satisfied you can ask for a referral to another rheumy
Denys

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