I’ve not written in a while. Things have not been good recently. I’m in a lot of pain this morning; mostly in my back (right hand side) and lower left abdomen. Still no further forward in understanding what is causing these pains. Went up to A&E the other week when it became unbearable and was told just to go home and take more morphine.
My rheummy saw me again the other week. I asked him why he won’t officially diagnose Lupus (currently Undifferentiated Connective Tissue Disease). He told me that he still thinks it is Lupus but I didn’t really understand why he wouldn’t give me the diagnosis. Something about a sliding scale?
Anyway....he x-rayed my spine to see if they could identify what is causing the back pains. It’s been over a month and I haven’t seen any results.
I’ve also been referred to another rheummy in the dept who specialises in Becets and vasculitis. I have to wait until August for my appointment. I’m a bit confused about this referral but at this point I will talk to anyone who will listen!!
In general, I just feel like ****! And it’s relentless....I thought that there would be some sort of remission but the malar rash, ulcers, hair loss, fatigue and PAIN are there each and every day. It’s been 15 months now and I feel worse than I did back at the start. I don’t even get good days anymore just bad days that are not really bad days.
I am now coming to terms with the fact that I may not be able to go back to work and that really scares me. I won’t qualify for any benefits so I would have to rely on my husband for everything. Is that fair? I don’t know.... but it makes me very sad.
My husband and family want me to contact the rheummy again to tell them how bad things are. But I don’t want to be that annoying patient that the Doctors all get bored of. What do you all think? Should I call them or ride it out on the morphine train until August?
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Crazy_Cat_Woman
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You should call the doctor's office. Let them decide if your symptoms are urgent or can wait until August.
Did the A$E do any pelvic or abdominal scans? Or an MRA for your vasculitis? Have you seen a gyn to rule out cysts or other ailments? Have you asked about a colonoscopy? Rarely, a marlar rash and positive Ana can be a sign of non autoimmune disease. I do not think is necessarily the case but differential illnesses should be excluded just incase.
I hope you do call you doctor. Taking morphine regulary is not the best option. Hope you feel better soon.
I’ve had multiple scans and colonoscopies over the years and they haven’t found anything. It’s definitely autoimmune though, this is my fourth confirmed autoimmune disease now.....turning into an unwitting collector!
I haven’t had any tests for vasculitis that I’m aware of so I will follow this up.
I think you are right about calling the doctors office. It’s their call.
Lower left abdomen? There are a lot of things there, could be gynecological, colon (even thou you did colonoscopy, it might be spasm related and muscle relaxant might help, do you feel better when in hot tub???) bladder, kidney referred pain,... You need to see a GP to identify the source as this might not be rheumatological!!! Actually it doesn't sound like rheumatological
Thanks Miccika ..... unfortunately it’s not gynae or bladder. I’ve had these scanned too. It’s not IBS either and antispasmodics and hot baths/ hot water bottles do nothing for the pain. The pain wraps around from the back to the front. Sometimes the back pain is on one side, sometimes it is on both sides. Ive seen so many doctors and none have come close to diagnosing it. It does get worse when I’m having a flare though which makes me think it must be related to my UCTD and it was definitely better when they put me on Prednisone. But I’m not a medical doctor....
I guess I will have to phone the hospital and see if they can’t move things forward.
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Hope you feel better soon. 
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