Rheumatologist appt

[SBee]

I have a long awaited appt coming up soon with a rheumatologist and wonder if anyone can advise me?

Diagnosed with fibromyalgia end of last year, and previously to that my ongoing hip pain was found to be osteoarthritis. But because my hands, wrists and finger pain seemed so significantly worsening, I was sent for an ultra sound which showed a lot of inflammation in my hands. so suggested rheumatoid arthritis. Hence the referral to the rheumatologist. ( btw, blood tests for auto immune conditions didn't show this, my gp thinks due to symptoms it may be seronegative rheumatoid arthritis) which I have suspected for a while.

Before any important health appt I like to get prepared,make some notes of symptoms and timelines etc and some questions I would like answered. I tend to over think things but I really don't want to waste this opportunity to speak with someone who may finally be able to give me a full answer arthritis wise.

Anyone able to suggest how I make full use of this valuable appt? I get a bit flustered on appts, hence my notes to try to keep myself on track.

 

[sunkacola]

My tips:
Writing yourself notes, or making a list, is a very good idea.
Remember to make everything as condensed and succinct as possible. Ask yourself if this or that detail is really necessary.

Having it written down will also help you not to wander in what you say, repeat yourself, or give extraneous detail. I know I have a tendency to do that sometimes, as do many people, so occasionally I will write down exactly what I am going to say to a doctor and then read it to them. I have found the doctor usually appreciates this as well because that way it is more organized and takes less of their time.

If you think the doc may ask you how long something has been happening, be prepared with actual dates (ie: since September, not "some time last fall").

Stick only to the facts, not what you think may be going on.

 

[SBee]

Thanks @sunkacola

Yes I really do find it hard to be succinct. I start off like that but ramble on.

Great advice to keep only to facts, as well - after all they are the specialist who will interpret my symptoms. I think like many people I am too keen to have an actual answer so cloud things by giving too much detail. The appt is not for a month so I have a lot of time to make my notes short and sharp, and only the essential details.
Thanks, I feel clearer now.

 

[SBee]

I think I know what my problem is, getting so anxious about the appt. I am scared I won't be believed.

I've had this before, many years ago when I had chronic fatigue syndrome. I had zero help or advice from any Dr and struggled on myself, Sometimes too fatigued to walk across a room. This went on for over 4 years.

I know rationally that with the fibromyalgia I have definite medical ' proof ' from seeing a specialist,and the scans showing inflammation on my hands again is a fact. But I can't help the irrational thought that I need to prove myself in a way. I lost some faith in drs because of this and have a huge need to justify myself, like I know so many on here have had to do.

So,deep breath, get some basic concise notes down and remember to keep breathing.. This is now I am now so I have a whole month to try to calm down.

 

[JamieMarc]

Copy everything @sunkacola said.

Be sure to include in your notes all of your symptoms, what the pain feels like, what makes it better, what makes it worse, things like that. I find that those are frequently asked questions regarding pain anyway.

At my last visit to my pain management doctor, I had actually written out a speech and saved it on my phone. I had so much to say to my doctor at this appointment, and I was worried I would forget something or that my anxiety would cause me to ramble, forget something etc. I told her I wrote this down and I hope you don't mind if I read it to you, and I explained her why I wrote it down just like I said. Like @sunkacola said, my doctor nodded her head and gave me a big thumbs up approval! So I agree, I think doctors really like that as opposed to the all over the place rambling approach.

I recently saw a rheumatologist myself but, unfortunately, she was unable to offer any additional solutions that I had not already tried before or was not seeing other doctors for. She did offer to give me an injection for my trigger fingers, but I told her I want to keep going the conservative route with the splints and the application of Diclofenac. But that's neither here nor there. Just throwing in my own recent experience for no good reason at all. ROFL

Good luck with this appointment @SBee

 

[SBee]

Hey @JamieMarc how ya doing today?

Well with you and sunkacola both suggesting a " speech " formula I think my best bet is to come clean at the start and admit I am concerned I won't be believed.

I think I will be comfortable doing that. I did speak with a GP last year when she thought I might have chronic fatigue syndrome and explained to her my first experience. To be honest she was so fair. Once I had stopped crying ( ) she pointed out my medical records had shown this condition as an actual diagnosis - something I hadn't even realised for 25 years.

I too think drs prefer an honest upfront approach from their patients. Interesting you both had such positive responses. Very encouraging. I will have my notes ( and questions) but more so I can refer to a timeline or to remind myself of the full range of symptoms as they are asked about.

As a side note I note a couple of my fingers are looking a bit crooked now so I am pretty certain arthritis as present, the inflammation maybe suggesting more rheumatoid I think. Do the splints help you? Any medicated gel was useless for me.

On a brighter note I have started a small form of meditation as other forum members have suggested, I think I am really going to enjoy and benefit,early days but feels so good. Also I now do a mix and match on my yoga to see what ones work best for my movements in each day. Nothing that uses weight on hand or wrist but the extra movement is now a solid part of my day. It feels good to be able to do some positives for my body and mind. A kindness of you like.

Hope today is a happy one for you

 

[sunkacola]

One thing I forgot to include is, keep your emotions out of it. "Just the facts, Ma'am." If you get emotional........any kind of emotion......the doctor may start thinking he has someone in the room who is unbalanced, and they are much more likely to attribute anything you say to a mental health issue rather than to a physical one.

@SBee :Just my opinion......but I don't think it's a great idea to start out by telling the doctor that you are afraid you won't be believed. It sets up a tone of "maybe I shouldn't believe this person, since others have not". Of course, do what you are comfortable with. But it's like going into a room full of people with a sign on you that says "please don't kick me". No one even thought of kicking until they saw the sign, but once they saw it......

I think it's better to go in confident. You know what you know. Stand on that ground and don't assume that anyone will do anything except take you at your word and take you seriously. If you want to be taken seriously, that is the best way to accomplish that.

 

[SBee]

Ooh. @sunkacola that never occurred to me. Good valid point. I think my visit at the gp caught me at a vulnerable stage. ( perimenopause with terrible cyclical moods ) I feel my hrt regime and a tiny AD dose has left me far more emotionally stable these last few months.

I know rationally why I feel the threat of not being believed,but you are right. It HAS been proven lately that I have been taken seriously and I have ' facts ' to back me up. You have made me realise I do need to let that go, I have been referred to the rheumatologist for very good reasons, my ongoing symptoms have sent me there.

I may still just say instead I get flustered and nervous at appts hence my notes.( My safety net) I'm all honesty they would not even consent to see me unless my symptoms were right to send me for a referral. So no, quite right I should go in with that knowledge and be clear,concise and firm about just how my symptoms feel and affect me. Am sure I will be fine once I am in there.

Thanks

 

[JamieMarc]

The splints do help, but unfortunately my trigger finger is still not healed. My plan of attack is to give it a couple more months and if it's not better go back to the rheumatologist.

What I like about these particular types of splints is that they allow me to wear them even while I have my hands in water since they are completely made of plastic, and they don't disable the entire finger. They do allow a small amount of movement and are easily removed if needed.

What they do for me is I wearing them at bed every night, I don't need to wear them most of the day after waking because they effectively stop the trigger finger, for a while anyway. So I have full use of my hands during the day without the splints. That being said, there is the occasional day where perhaps around midday my worst finger needs to be splinted, but that doesn't happen too often.

I don't know if any of that helps but I hope it does. Please let us know how your appointment goes.

Have a wonderful day, Bee! LOL

 

[SBee]

Well @JamieMarc I don't think I have trigger finger. I have swelling and stiffness in all my fingers ( and wrists) but one is starting to turn up at the end? I can't straighten it all the way. More I research the more I think it is rheumatoid arthritis, but need to try and be patient (me?!) and wait for the appt. I will ask about a splint, I could not do the full type that covers the wrists as both my wrists are the most tender\sensitive part of my body. I can't always have clothing touch me, and water splashing there feels pathetically awful.

I treated myself to a different online yoga set yesterday... BIG mistake. I really enjoyed it, good range of movement and felt a positive kindness to myself but blimey it's affected my shoulders and hands so badly today. Felt a bit down, but have brushed that off now and hope tomorrow will be better.
Thanks for the info about the splints, I am starting to arm myself with info from this forum. For me, loads of little things I can do to help myself make a real difference. I have totally lost my previous worry of feeling inadequate for needing ways to adapt - now I see some aids or changes as a positive way to make life easier and less anxious.

Thanks my friend, hope today\this evening ( I can't fathom time zones!) Is a good one for you

 

[JamieMarc]

More I research the more I think it is rheumatoid arthritis, but need to try and be patien

Yes, it does sound like it might be rheumatoid arthritis, but I pray not. I think everyone knows just how crippling that can be, so I am literally praying for you. My sister has it, but thankfully hers is progressing very slowly. That is a blessing.

And you're right, if it does turn out to be that splints won't help. I wear other splints for my OSTEOarthritis, like my wrist for example. Actually, my thumb joint, but it radiates into my wrist.

am starting to arm myself with info from this forum. For me, loads of little things I can do to help myself make a real difference.

I'm so glad to hear this. I remember when I first joined this forum I was utterly clueless about what fibromyalgia even was. All I knew is that I had been recently diagnosed after 8 years of pain and no quality of life. But the reason I'm glad to hear you say this is because it is because of this group, this forum, that I have learned the most of all resources that I use. There is nothing like having a dialogue with fellow sufferers because, after all, we are all living this experience and who would know better about what might help with pain and fatigue and fibro fog, and what might not help.
I have gleaned tons of information from our forum, and have employed many new techniques and ideas that have been presented by other members. And I use those things to this very day.

It warms my heart whenever I hear of a member beginning to gain knowledge and clarity and, therefore, understanding, relief and knowledge. Knowledge is power right! I myself am still learning and understanding.

Thank you, my day has been wonderful, and I hope yours has been too.

 

[SBee]

Oh @JamieMarc you really really affected me when I saw your words. Your sincere kindness and care means so much to me, I really appreciate your thoughts.

I do need to look into the possibilities in what else is going on with me. Not in an obsessive way, more to get suitable knowledge and understanding. I feel if I can get some of this pain diagnosed and finally treated, I can almost ' see what remains ' with both the fibromyalgia and the or osteoarthritis and\or rheumatoid arthritis if that makes sense? As all of this is happening all at once I can't fully separate some of the pain as being to fibro or arthritic.

I feel quite moved and encouraged that I can achieve some I depth 'conversations ' with people who can really get what affects us. ( or enjoy a thread where we can laugh or share day to day happy things!) Obviously all of us have different levels of pain and symptoms but we all have a willingness to share or just support.
Right, I 'll shut up now before this begins to sound like a speech at the Oscars....

I wish you another fabulous day,and as always, thanks

 

[JamieMarc]

rheumatoid arthritis if that makes sense? As all of this is happening all at once I can't fully separate some of the pain as being to

Yes! That totally makes sense to me because that is exactly what I am focused on this year. The very same thing. I have told my doctors that I want to fix what can be fixed, not cover it up or put a Band-Aid on it, and what cannot be fixed we will manage together. Unfortunately, I had to cancel some x-rays this week because of the medical bills piling up. I need to get some of those paid down before proceeding with further medical investigations so to speak. But yes, I totally get where you're coming from 100%.

 

[SBee]

And my next question is..... @JamieMarc if we are able to mask pain using drugs, ( much needed btw) how can we follow the progressive nature of some conditions. I am thinking arthritis in particular ( I have osteoarthritis in hips and knees ),and possibly RA. Just with scans and xrays?

So far I am on little medication for pain, one low dose cocodamol in the morning, and 3 x naproxen to try to ease inflammation. I just want to get whatever diagnosis I need to get the arthritic side under control a bit so I can see how the fibromyalgia symptoms affect me, and then be in a better position to decide whether or not I will need medication for that. Seems like we are on the same path right now to try to separate the symptoms to find the best treatments. Bloody web of symptoms to untangle isn't it?

Sorry you need to cancel the X-Ray appt until financial situation is better. I really know how lucky we are with the NHS. The waiting times can be long, and the management side can be a bit iffy, but the workers are amazing despite being overburdened.

 

[JamieMarc]

Bloody web of symptoms to untangle isn't it?

That's an excellent way of putting it. A very tangled web indeed!

how lucky we are with the NHS. The waiting times can be lon

Our national healthcare, Medicare, is excellent! Never any waiting period, very low co-pays, it's just that I've got more medical debt right now then I am comfortable with, and I just want to get some of it paid down. The copay for the x-rays would only be about $20, but for someone on a fixed income like me living check to check, it's important to not live beyond my means. I am working with a copay assistance group, and I am expecting them to pay down a couple hundred dollars of my medical debt as well as cover one of my supplements that I pay for every month out of my own pocket. That is a very new program that I just joined, so I'm just waiting for that to go through before rescheduling the x-rays. Actually, I was quite happy to cancel it. Between February March and April, I have had and still have so many doctor appointments. I hate how they pile up sometimes. LOL