just wondering if anyone else has been in same situation.. I have been very ill now for over a year, but only now I am properly being looked after and having a diagnosis from consultants. Luckily enough a very good Rhumy from a NHS hospital properly looked into my case gave me more bloods and wanted me treated straight away; he said i had connective tissue disease, arthiritis and the start of Lupus and started me on steroid injections and hydroxychloroquine. From having allergic reactions i was stopped the medication and he sent me to another rhumy from a different hospital to see what they think but she has now said i just have FIBRO!! and not all of the above what my consultant mentioned.... I was very upset as with fibro there is nothing to help me with my pain but with the other illness's i can actually be put on treatment for something...
Before any one asks i have been on numerous pain meds which they give you with fibro under my GP before actually being diagnosed and nothing at all works for my pain and symptoms.
Im just wondering has anyone else been or is in this situation and what actually happend.... I am due to see my rhumy this friday now so looking forward what he has to say and if i will be put on different treatment!!
I wonder why the consultant said you have CTD, have you seen your blood test results, I always get copies so I can make sure nothing gets missed as they have done before and I also do my research so I can ask questions. I have undifferentiated connective tissue disease (diagnosed 14 years ago) and CFS and Fibromyalgia , I've seen a rheumy this year who said I have cutaneous Lupus but I'm pretty sure he's got that wrong, he told me I have Lupus then in the GP letter he said cutaneous Lupus,
so I'm waiting for a second opinion ,I know how you feel as over the last 6 years everything has been put down to Fibromyalgia and I've had every treatment available with horrible side effects and until I pushed for further investigations and to see a rheumatologist again I felt I was getting nowhere and couldn't accept that I could feel so poorly for so long with new symptoms and slowly getting worse for no reason, my blood tests showed positive ANA and positive Anti RO antibodies so I know there's more going on than just Fibromyalgia! I was put on Hydroxy in May but had it made me feel even worse and had to stop, I also had a five day course of steroids and felt horrible, I have a major drug intolerance that makes it difficult for treating my pain and dreadful fatigue and anything else which doesn't bode well for future treatments!
When you have your appointment ask the rheumy why and how he came to the diagnosis of CTD/Lupus and arthritis.
Being in limboland is horrible, I'm hoping for a correct and definite diagnosis when I go to the rheumatologist next month. Fingers crossed you'll get some answers, I'd be interested to know how you get on and what treatment he prescribes for you, let us know.
I'm not sure how helpful this is but just wanted to say I understand what you're going through.
Omg I'm so glad you commented! Your literally going through the exact same I am..... it's so horrible no treatment is working for my pain. The recent dr I saw said the amount of pain I'm in it can't be tissue disease An just fibro... I constantly had raised blood tests espically in ana, esr and other tests....
Hello again, well I could've written your post you sound just like me which is why I had to reply!
It appears different Drs seem to have different ideas which is why we need to challenge them, you can have pain with connective tissue disease but it's common for people with an auto immune disease to also have Fibro too so yes you can have both, it's so frustrating!,
You wonder don't you how one can give you one diagnosis and another something else.
Do you know how high and what pattern your ANA was? Mine was anti centromere pattern at 1:640 , I have some sun sensitivity but no major skin problems so I was quite upset when I read the dr had put cutaneous Lupus after telling me Lupus which is why I asked for a second opinion, he also lied to me about some tests which turned out I hadn't even had done which was pretty shocking.
My worry too is that I will be fobbed off and told I only have Fibro although having just Fibro is horrible enough but my blood tests show more is going on so I won't accept that , it's a long road and the waiting is hard, 6 months for this appointment and 13 months since first referral with the inept consultant! I'm also waiting to see a pain consultant, not sure what they will suggest.
It's the worst thing ever to go through, you don't feel like you have one dr you can go to who actually can understand what your going through An will help you through something.
My ana was 400, then 1600 then back down to 400... my esr has gone as high as 40. I have all the blood tests I have done at my GP online but nothing of my hospital appointments... I also had a raised ca-125 which is ovarian cancer which I don't have but was told it's high because of lupus?! So no idea what's actually going on.
Lupus does weird things it seems and yes it is horrible and life changing too, I hate it ! I think I would be more accepting with a definite correct diagnosis so I can move on and deal with it mentally too rather than all this faffing around!
Your consultant should be doing the appropriate tests for Lupus, there's a list of them here
I had all these done in May apart from the ones for anti phospholipid syndrome which I've since had done and were negative.
Maybe you could print it off or make a list and show the consultant and ask him if you've had any of these done already, if you haven't had them done it might nudge him into doing them!
I hope it goes well for you and you get some answers tomorrow.
Good luck and let me know , I have everything crossed for you 👍🏼
Well i didn't get much luck out of my appointment, I saw a completely different consultant couldn't give me no answers to none of my questions as he didn't know (why have i been having 2 day periods for the last 8 months)
Just wants me to have more lupus blood tests, MRI on the bottom of my spine and is not ready to put me on no medication just yet as still wants to investigate me, but told me to just see my GP to get pain meds even though i told him my gp wont give me nothing else as I have literally tried everything!!
Oh no sorry to hear this, blimey it's an uphill battle, maybe it's time to ask your GP to refer you to the pain management team, I was referred in September and I'm still waiting! In the meantime I've bought myself a tens machine for my lower back pain and I'm hoping when I do get to see the pain consultant he'll inject my hips for me at the very least. I wonder why he didn't suggest the pain clinic!
I'm glad you're having more blood tests for Lupus and I hope they let you know the results when they get them and not leave you hanging until your next appointment, ask for copies too!
It can take a long time to get a diagnosis, often years, don't lose heart you're not alone in your quest for answers, my turn next month and I'm already feeling anxious about my appointment 😩.
I'm with you all on this one. I've was diagnosed by GP with fibro in 2013 which was later confirmed by rheumy (2016) but I've had two ANA blood tests. First was 1:320 and second one was 1:640. My face is also often very red (but they say not butterfly rash) but won't tell me why I'm so red. And, also had waiting for months for next appointment. I saw the rheumy in March 2016 and was meant to see him again in 6 months, but he left. Eventually I had a second appointment (after many phone calls chasing it up) in March 2018 but was fobbed off with a specialist nurse so it was a total waste of time.
Hi there, don’t be fobbed off with a specialist nurse, they may be good at what they do but you should insist on seeing a rheumatologist with 2 positive ANA’s that are increasing.
This nearly happened to me when I asked for a second opinion in another trust, all they focused on was the fibro when they said to see a nurse I said no! I was looking for answers, I knew there was more going on and I now have a very good rheumatologist, it was worth the fight! I think for many drs fibro is an easy answer but if you have positive blood tests pointing to other things that could be going on then they really should investigate. My rheumatologist never mentions fibro and since then my ANA has shot up to 1:2560 and positive anti Ro. It’s worth pursuing to get answers and the right treatment is really important especially if you’re feeling poorly 🌸 x
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