So confused

I've just come out of an appointment with a lupus specialist. I'm more confused than before. He said that even though I have a diagnosis for lupus, he believes I might have fibromyalgia. He said that my steroid injections wouldn't work with fibromyalgia, after I had told him that I'm significantly better after having one.

How can they make such a huge decision without access to my blood results? I am ana positive.

Where does it end? I'm so low now. The doctor doesn't seem to listen.

23 Replies

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  • I have found that a lot of specialist can't seem 2 agree on certain things, despite all having access 2 the same information, it is confusing & very frustrating. Maybe he meant that u have Fibro as WELL as the lupus? Seems a lot of people with lupus tend 2 have fibro too but after having a quick look on the net there is a lot of conflicting evidence with some info saying positive ANA can indicate fibro & some saying u can't have a positive ANA with fibro so a lot of help THAT is! Have a look at this link, it MIGHT help x lupus.org/webmodules/webart...

  • Also honey, check out my last blog post, there r a couple of links on there ;0)

  • Thanks. I've read your links and I can see lots of similarities between lupus and fibromyalgia. What confuses me is the quick decisions doctors seem to make. I was told today to "change my attitude to life and exercise". I have always been a really positive person and have always had a busy life. It's only because of my illness that I'm not mobile now. I felt like a fraud. One doctor can change the course of treatment so easily and that's scary.

    Oh well, I'm having a steroid injection tomorrow morning! I should have a few weeks of feeling better. Xx

  • I think it's quite difficult 2 confirm 100% when there r so many other overlapping conditions too. In 1 respect I was lucky that the Antiphospholipd & SLE were the only 1's 2 begin with & I went on 2 develop everything else a couple years later :0/ x

  • In my long experience, one consultant will often say something definitely won't work for a particular problem when another will advocate it as the best possible treatment. This disparity in opinions definitely doesn't help us and is most confusing. However, try to hold out for whatever DOES work and also try not to allow anyone to make you feel bad because they wrongly assume you're being lazy or doing less than you could manage. I find the latter accusation incredibly insulting! In my experience, people battling lupus were formerly extremely active before diagnosis. In fact, it seems to me we were so active we burned ourselves out somehow. x

  • u may b on2 something there, the majority of people I 'personally' know who have ended up being a 'Lupoid' have basically been extremely active people, I myself used 2 compete in sprinting, long distance running, hurdles, high jump, long jump 4 my town, as well as regularly playing tennis, netball, basketball, hockey & doing akido (exhausts me just thinking about it now!)

  • Suspicious isn't it hun how it usually seems to work out like that?! And so incredibly more difficult for us flibbertygibbets to adapt to lives based around resting. Drives me totally NUTS as I know it must others!!! Push through it though and you're on a hiding to nothing. Blardy disease!

  • Now this is interesting cos I used to be a PE teacher pre diagnosis. Played county hockey and cricket. Also enjoyed tennis and basketball. Now I can't even walk without crutches!!! How I would love to be able to run around and play like I used to 20 odd years ago!!!

    I wonder how active other lupies used to be?

  • Got me thinking that maybe there's something in us that makes us go at 'Full Steam' & then just 'Burn Out' or whether in actual fact subconsciously, our body knows what is going 2 happen so tries 2 b in peak condition b4 it hits. It is very interesting. Maybe Paul could do a poll on how active people were pre lupus, I'd love 2 know! Makes me wonder if they've ever looked into anything like this, it's almost like the more active u r, the worse it hits u. Think that's why so many of us found it hard 2 accept :0( x

  • I couldn't agree more Tigerlily about being so active, I worked 12 hour days in a demanding role, looked after my grandson and on the whole felt like I was always felt busy but on top of things. If I could go back now I would do things so differently. I wish we could play back our life on film to show how significant the changes have been.

  • Indeed mstr. I bet 99% of us were pushing ourselves physically when we developed the disease. It's proved a recurring theme for sure!

  • I wish there was just a 'like' button on this site as so many times I find comments so helpful and would just like to tick this as we do on facebook. I must have my thinking head on today;)

  • Thinking head? I want 1!

  • HealthUnlocked are working on a few new features for the next version of the website, which should be going live some time next year. A feature sort of similar to a 'like' button could be appearing.

  • I 'like' this Paul:)

  • Paul, I'd like 2 suggest a poll topic that a few of us find quite interesting. I'd like 2 know how active people were BEFORE we were affected by the lupus. I'd really appreciate it if u were able 2 do this.

  • Hi Sher78,

    If you go to the polls section, you have the ability to suggest one. Pick what you would like your question to be and what options you'd like people to select from and then I'll make it happen :)

  • Thanks Paul :0)

  • Oh, can't seem 2 c how 2 suggest a question in the Polls section :0( Maybe I'm having a lupoid moment ;0)

  • Found it, I had a Lupus moment ;0)

  • I used to do loads of exercise too, running, circuits, aerobics, swimming, I used to exercise most days sometimes twice a day. No one has every mentioned how we were before, now I can't do much exercise at all. I have tired but it seems that when I make an effort I end up having a do and feel really ill. Now I can get breathless walking up a flight of stairs!

  • glad I'm not the only 1 that is like an asthmatic, chain smoking, overweight sheep when I take the stairs (sorry!). I think this is why some of us find it really hard 2 accept, especially if we were super fit b4 :0(

  • Hi Purple-Lou, sorry to hear this. It took Doctors. Maany years to diagnose my Lupus, and they aren't as clever as they like to think.Some of the symptoms I used to get at the beginning was swollen fingers, wrists and ankles. I also got very itchy rashes. If I got bitten by an insect my immune system went crazy and I would feel so ill. I think everyone with Lupus get bad effects with insect bites and the swellings. It you get this its more likely to be Lupus. It can take a long time to show up properly in blood test results. Fibromyalgia is very debilitating too. I know people in wheelchairs and who can't type with it.....but not sure they get the swelling. I was diagnosed with Fibro too and it seems to affect my muscles badly. They feel tight and tense. Anyway I press on my body hurts and it causes all sorts of symtoms. Doctors don't know what causes these illnesses so I guess it must be hard for them. I would have a second opinion if possible. Look for a good rheumy who speciailises in in immune disorders. Good luck. It is a pain not knowing for sure, but if you keep battling. On you will get the right answers in the end x

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