Saw rheumatologist yesterday, he suspects SLE and APS but if bloods dont show anything then it's secondary fibromyalgia. I'm not convinced my issues are just fibromyalgia because simply i have the butterfly rash. And also it's not just muscle and surface pain. I know I'm unwell on multiple levels. I'm beating myself up about what I didn't say because I was so anxious. I don't want something seriously wrong with me but equally I can't cope with what is happening any more. I'm being reviewed in a few months I had multiple bloods and am having a chest CT scan for some reason that I didn't ask why, I was too busy panicking. I know he is doing all the right things, and he was fair and is being cautious but I missed out explaining on some major symptoms of mine and I'm worried it's just going to be another dismissal because of my anxiety failing me? It all depends on the bloods. And that's 2-3 weeks wait and I'm not sure how long it will take to see him again. I feel really low and keep crying. Just frustrated at myself and this situation. I hope I'm not being too irrational. Has anyone else felt like this?
How to cope with the waiting?: Saw rheumatologist... - LUPUS UK
How to cope with the waiting?
The waiting’s so hard isn’t it? But it’s something we all just have to get used to with these conditions - nothings ever fast in the world of rheumatology ‘fraid. Been doing this stuff for many years now. It gets easier as just expect long waits now and occasionally surprised and relieved when I get quick follow up!
Try to find good distracting box set to watch on tv or a good book to immerse yurself in and generally get to work on finding stuff to do that improves your overall mental wellbeing. Something you can do for yer self whatever the outcome of blood tests are.
And no one ever goes calmly or clear headed into their first rheumo consultation so please don’t beat yurself up!
Thank you for your kind reply, it's much appreciated, I really needed some kindness💜
I think because I've waited a year for this appointment and invested so much in it I made myself very stressed and it was over in 30minutes and I didn't say what I needed to say. The frazzled feeling has yet to subside, just fallout, trying not to feel the weight of the situation and the stress of it all. Because just as much as I'm scared of the bloods not showing anything, I'm equally scared it will and my life will change beyond recognition. My life has been spent waiting for doctors but it's never been so close to having an answer! 😩 It feels like everything depends on these bloods.
Yeah honest I get it entirely. The uncertain time is always the worst no doubting this. You are at the worse stage and it sucks 🤗
A years long but some here have waited even longer for follow ups, reviews etc as shortage of rheumatologists and pandemic - so you’re not on own at all and either way it’s a case of massive adjustment.
But you must try to breathe deep like you’re on way up a massive mountain getting a break now because average diagnosis time for our rare conditions is 4 years. It’s not either/ or usually - it’s more tests and lots of head itching by the specialist and all this stuff. Rheumo disease isn’t like cancer and Fibromyalgia is often misdiagnosed. So prep yourself mentally for more uncertainty cos it’s better to expect the worst and I promise you uncertainty is the worst. It’s taken me eleven years to get diagnostic clarity of MCTD with sjogrens .. and even then blood points to more worrying stuff but hey I’m resigned to watch wait watch wait …🤷🏻♀️X
Hi Ziggidy and @HiddenI think Hidden’s reply, they’ll probably difficult to ingest, is actually a very balanced reply.
It’s also partly because these things take years also partly because our bodies don’t just suddenly have lupus or Sjogren’s or fibro or whatever but they seem to develop over time a bit. I don’t understand it well enough to explain it but my observation over the past 20 years is that these things evolve slowly rather than switch on suddenly. So even if you get a diagnosis you might think, for example, oh it’s undifferentiated connective tissue disease. But really it’s another connective tissue disease that has not yet fully developed.
Well, that was my experience and I know that of numerous others.
It’s important to know because you can go to the doctor and get a diagnosis and think oh well now that settled. But then three months later there something else and 12 months later though something else and two months later there something else. These are very complex disorders and they have a lot of different presentations. Even with Fibromyalgia which some people might be prone to thinking is minor – – it’s not! — there can be so many correlated additional diagnoses that seem to go alongside it such as migraines and digestive problems and neuropathy. Changes in mental function alone are complicated. The changes and physical function are complicated.
You sense that there’s more going on in your body than what you read is the description of Fibromyalgia. You’re very likely right. But this is not the end of your journey.
Also very difficult is that there is a level of people who are having urgent medical distress. I find myself trying to assess how urgently.
With apologies, I’m too tired to review who said it but somebody mentioned distracting yourself. That’s absolutely a good option times. 👏🏽👏🏽👍🏽😊
In addition, I find that when I’ve gotten to the tearful stage I need to slow down, pull out my journal or keyboard — which ever you prefer, or drawing pencils (or whatever you can best express yourself with) and express my worries. What’s the worst case scenario that I’m upset about? (Example: what are your fears that result from not telling the doctor.) Write freely ALL your various concerns. Avoid keeping it inside unarticulated. This drains off some of the anxiety. If you can share your clarified worries with a trusted friend, even better as a second step.
It’s good you already started here. Don’t be concerned about grammar or form. Scribble. Make a bulleted list if your words do not flow very well.
I wrap up with saying, you’re doing a really good job reaching out for support and help because that is critical in this process we’re all in. Well done and keep up asking questions and getting support.
About 20 years ago I could’ve used the input Hidden just provided! So write it on a note and come back to it in the future a few times. Maybe put it in your diary on an electronic calendar to repeat quarterly or yearly because it really is solid.
Well, if a rheumatologist suspects SLE and APS and they tell you straight out it seems unusual that you would not be followed closely. Generally, lupus is suspected on clinical grounds - especially if a rheumatologist is diagnosing - and the blood work should be confirmative.
Do you mind telling us your symptoms and labs so far?
Waiting is the worst. Also, secondary fibromyalgia implies there is a primary diagnosis. Many lupus patients have fibromyalgia. Very complicated, right?
There was no fibromyalgia or even an internet when I was diagnosed but yes, I just wanted to know what was wrong. I think most people feel that way. We know when we are not right.
You are definitely not irrational!
Poor soul, it's not easy, and it takes its toll on even the best of us. You've done well articulating what you have so far. And it sounds as if things are in motion. Either way, it's a step in the direction to get clarity and help.
Bless ya
Lottie
Bless you. I thing we have all been there. Some including me are still like this and I am 12 years into my illness. You have seen a Rheumatologist and that is a good start. The tests he has ordered will look at what your blood is telling him. There is nothing more that you can do about your appointment now but you can prepare for the next one. Take photos of rashes, ulcers, swellings. Document symptoms in bullet form so that when you see him you can give it to him and not have to rely on your memory when you are anxious.I know that it is stressful but we are all here to support you xx
CecilyParsley good advice. “Document symptoms and take a list in bullet form” 👏🏽👏🏽 👍🏽 (or two copies to leave one with rheumatologist :).
Awww bless you. I feel your pain. The wait is awful but unfortunatly this is our norm. Ive been dealing with all this since 2004 so I understand. My advice to you get a little notebook and write down what you want to tell the dr next time. I do that because i forget everything and my dr actually appreciates it as she gets the full picture then. Take some deep breaths and dont stress yourself. Do something nice for yourself,,and remember patience is a virtue and you will get there I promise you. Look after yourself and hopefully the bloods will show the correct info. Lots of love xx
Perhaps put what you wanted to say to him into a document and write to him? Explain that you were anxious and forgot things
It will be useful for the future anyway.
Good luck
Hi Ziggidy, it’s completely normal to get freaked out by all this. We want doctors to find something, but it’s overwhelming to think about what they may find!
I find it helpful to take a support person with me to those appts - not to things like blood tests, but any appt where we may be discussing difficult things or bad news or meeting a new specialist for the first time.
Do you have anyone you could ask to come with you? They help you remember stuff afterwards, and they can help ask questions or even advocate for you during the appt!
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