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Hi everyone,

I hope this doesn't just turn into a moan but I am having a really rough time of it and I am hoping you will understand!

I was diagnosed with Undifferentiated Connective Tissue Disease query Lupus about two years ago sfter being wrongly diagnosed with ME for 9 years. I have been on Hydroxychloroquine and Prednidosolone for the majority of that time. I also have mild raynauds, treated with Nifedipine and I am suffering with Ventricular and Atrial ectopics and a generally unhappy heart rhythm which they are struggling to treat.

I haven't been able to work for all of this time and have been doing some voluntary work. This year I have started training again and have been going to Uni once a week, essay writing and seeing clients (training to be a counsellor). Over the last few months I have taken a real turn for the worse and my GP seems to be at a bit of a loss. I had ablation to try and sort out the heart arhythmia in december but it didn't work and my cardiologist put me on a new drug, which I have just found out can excaserbate lupus.

My gp is trying to get hold of the cardiologist but as yet has had no luck. I am exhausted in a lot of pain, my heart is still thumping about all over the place and I am seriously fed up.

I am at a bit of a loss as to what to do next. My GP doesn't see any point in me trying to go back to see Lupus consultant, not due back to St Thomas' until Sept. because he thinks they will just say come off the heart drug. He is probably right but I feel so frustrated because noone seems to want to treat me as a whole person! Cardiologist doesn't seem very interest in the UCTD and the lupus clinic doesn't seem interested in the heart business either. My GP thinks the two are linked but he can't do anything and has even told me I am a nuisance, which although it was supposed to be a joke and I'm sure it is frustrating for him - I am living with it and I am getting to the end of my tether now!

Has anyone else had issues with their heart like this?

Sorry to babble on, just needed to get this off my chest and I don't have anyone to talk to about it at the moment, think the cat has had enough of listening to me now!:)

Anyway, any suggestions/comments gratefully received! Thanks for taking the time and energy to read this essay!

Jo x
 

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Pollianna
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Aww Jo, that's not at all a moany post. I do feel for you. My story is similar and I do empathise!! I would get back to the Lupus unit and ask yr consultant if they can refer you to a cardiologist at St Tommys. Maybe that way your treatment will become more "holistic". Hope that makes sense?. I have found that after seeing the proff of genetic dermatology up there and Dr D'Cruz that they are very careful of not treading on eachother's toes up there and tend to work very very thoroughly as they are a teaching hospital

the one thing I noticed is that they don't simply give up. Hope you feel better soon :hug:
 

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Hi Jo,
I know what you mean. One of my pet hates is that nobody treats you as a whole person. Surely with diseases like Lupus most symptoms you get can be related in some way and also we need to know when a symptom is totally unrelated.. but the fact that you see one person for this.. one person for that and nobody actually puts it all together frustrates me too.
I have no answers Im afraid and sorry you are feeling so bad.
Try to keep strong and keep pushing for the best care and treatment you can get.
A good moan here always helps too.
Luv Sal x
 
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