Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group What to expect at my first appointment?

I finally have a date scheduled for a rheumy. In preparation of the appointment I had a TON of blood work done. I'm not sure what all they were looking for, but I know the HLA-B27 test was one of them. I've had X-rays and an MRI done already. They only did an MRI of my SI joints, and I'm a little disappointed because the MRI wasn't done on my back (and that's what's been giving me the most grief lately). So anyway, I have all this done, I just need to see the doc. Does anyone know what happens at the first appointment? Will I look like a druggie if I ask for pain meds right off the bat? What are the odds she'll give them to me?

Don't worry about looking like a druggie. Any Rheumy worth their salt is going to know how painful AS is.

I have had the most luck discussing pain in terms of functionality. Also being open to the fact that if the Doc has a way of decreasing inflammation, pain will also go down. Whatever your treatment ends up being, I have found that the way I eat can either help or hurt the treatment outcome.

Good luck. It's awesome to have all your bloodwork and scans done, so you actually can get information at this appointment.

Take Care,
Donette

Instead of asking for pain meds, say something like" I can't get much sleep because it hurts too much, what can I do to help with the pain". Talk about how the pain affects your life, how it limits your activities.

It helps to keep a journal listing when, where(body parts) how badly you are hurting. Take it in to show the Dr.

I have seen that its better to explain in detail how it effects the life. It also depends on the individuals to a large extent. There is no specific pain meter to measure the pain handling capacity of an individual. Some cope better, some don't. So its a subjective judgement that a rheumy has to make. Assist him in making that and rest assured the rheumy will do the best.

My rheumy doesn't prescribe. He sends his recommendations to my GP and she prescribes. I highly recommend you take the pain map. My method was to make three copies of the pain map, and fill them out for good, average, and bad days. I also used yellow, orange, and red pens to highlight the spots that hurt the least to worst. And yes, definitely talk specifically about how your functionality has been affected. Good luck!

Is this the first time you will be seeing her?

Just my opinion but getting drugs from a Rhumy in my experience is gonna be a no go I had mine for 12 years and he wouldnt give me anything stronger than hydrocodone.

I agree with Donna I wouldnt ASK for drugs I would be like I am in so much pain or I cant sleep at night what can I do for that or is there anything you can give me?

Hopefully in all the bloodwork they are also doing a lupus panel
SED Rate
ANA
Rhumatoid factor
CRP

Keep us updated on what happens, good luck I hope it goes good for you.

Lisa

Hi, I'm glad you finally have an appointment. They probably only scanned your SI area because that's where classic/textbook AS starts. Unfortunately, that is not always the case, especially in women. However, it's a starting point.

Type out a list of your questions, then put a star beside the three that are most important to you. Hand the rheumy the entire list at the beginning of your appointment so that he can read them and address anything he finds is more medically important. The pain map is also a very good idea, as well as a list of how your pain impacts your life. Do you have trouble reaching the top shelf in your kitchen? Doing up your bra? Picking something up off the floor? Standing up after sitting for more than a few minutes? All the mundane things that we think should be easy, but aren't because of the pain. I agree with the others, don't ask for pain meds, but ask what can be done about it.

I hope the rheumy can help.

Hugs,

Definitely take a pain map - see menue here on KA, top left hand side. Is an excellent immediate reference point.

Agree with the others, don't 'ask' for pain meds, but, could tell rheumy 'what' you have been taking upto now, and advise IF worked or did NOT work! Ask what she wuld recommend that you take that would be efficacious.

Shame they did not do an MRI of thoracics. Hmmmmmm. Your SIs might not be compromised 'at this moment in time' (takes a while for the SIs to BE compromised and, women tend to present differently to men). So, ensure that you tell rheumy about your upper back being painful etc etc.

You might want to take someone in with yu to the consultation. A member of yr family or a good friend. They can pick up the bits of information that you might forget? (Gives you another pair of ears...'smile'.) Take in a pen and paper for notes. Don't hesitate to re-ask a question or to ask for clarification on any point you don't understand. Don't be nervous or shy, be open and clear. Also, remember, they aint 'God' and you are paying them!

Good luck with the appt - let us know how you fare.

Molly C (France)
Keeping on Keeping on (as we all do)

I didn't have to ask for drugs. My walk, posture, and declaration of pain when I stood up did that for me. I made a point to go to my first rheumy visit in the worst condition my body could offer. I made sure I took no NASAIDs days before the visit. I was a mess.

I started typing up a written description of how I feel and any events since the last visit. And like others mention I also include written questions. It makes that question/answer period more efficient. You no how you describe something...then the doc repeats it wrong...then you have to corect then...and on an on. That pain map is a really good idea too. I'm going to attach one of those just as soon as I find a guy map.

I hope it goes well for you!

Lath - Go to SAA, there is a chap map that you can adapt there.