Confused: I am still very confused with all what is... - LUPUS UK

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Confused

Kimmi56 profile image
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I am still very confused with all what is happening to me , doctors seem to talk into the air above your head and skirt issues , for the last 3 weeks I have Been suffering with really bad fatigue ( worse than normal ) headaches, stiff neck, sweats, itchy skin, itchy eyes, painfully joints ( more than normal) swollen joints, mouth ulcers, nausea ,stomach pain, digestive upset, nails splitting - breaking and awful persistent dry cough and wheezing which is causing more discomfort to throat which already suffers from rawness due to acid problem is this classed as a flare ? Sorry to sound so confused but I feel like I can not get of this runaway train

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Kimmi56 profile image
Kimmi56
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4 Replies

Hi Kimmi56. I can relate to every one of your symptoms including dry cough and digestive upset although I don't sweat very often now and have nose ulcers rather than mouth ones. But I don't have an official diagnosis of Lupus - I have RA apparently although I really feel mine is very much more Lupus-like. I hadn't considered all these symptoms as being part of a flare but I think sometimes everything comes together when you are stressed out or during bad weather or when the immune system is particularly overactive. Perhaps this is a flare but I normally have a high ESR and other inflammation register when I'm flaring but yesterday my ESR was only 30 which is low for me so I'm guessing in my case it's just coincidence that all these symptoms arrived together. I hope you feel better soon.

Kimmi56 profile image
Kimmi56 in reply to

Thank you for your reply ,I am going to have to get more pushy with hospital, I see different people all the time and one says one thing ,then ,the next says no don't take that he has to ask me, and I have sort of been in the middle of it all, I have a lovely doctor but takes two to three weeks to get an appointment so I don't bother that much , it has taken me 7 or 8 years to get them to actually find what is wrong ,I am not used to being floored like this .

chrisj profile image
chrisj

I don't know about a flare Kimmi but I can relate to all those symptoms before I was diagnosed with mild SLE in 2005. Sweats, muscle aches, fatigue, joint pain and the dryness you mention were all there....mouth ulcers, my nose was affected, bowel problems, weak nails, hair thinning and falling out.

My shortness of breath was down to lack of vit D and asthma, plus I was diagnosed with Sjogrens which explained all the dry symptoms and Raynauds. Plaquenil was prescribed to begin with and I'm still taking it as its helped so much. The fatigue never quite goes away but its manageable now and the sweats are better. I changed my bedding as well....I have osteo arthritis too which is where some of the joint pain and stiffness comes from...

I was given sprays for the asthma and that's been a long road but its under control. I take Adcal to supplement vit D. Yearly checks now with the rheumatologist doctor and I see a nurse mid year for a chat and blood tests. I started exercise classes last year twice a week, one hour each session...

I can empathise with how you must be feeling. Are you taking any meds at all???

misty14 profile image
misty14

Hi Kimm

Sorry to read your having a bad time. I can relate to a lot of your symptoms too and can make the suggestion have you tried Losec for your digestive problems?. This could help your dry cough and stomach problems. Do you take Lupus treatment or are you trying to get a diagnosis?. You must if you can be more forthright with doctors as it's your life and body and they should talk to you properly not over you as if you don't exist!. Hope I've helped?.X

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