new to lupus

[maire3761]

Just found out in January that i have possitive ana test, homogenouse, ana titer of 1:320. Horrible joint pain, tired all the time, 99.5 fever off and on, and recently have delt with lightheadedness when i stand from sitting. Its a wierd feeling of almost faint. i push my son up the wheelchair ramp almost every day and today i went to push him and when i stoped i couldnt breath. it was the weirdest thing. The dizziness just started a few days ago. I have been getting heart tests done, havent heard of the results yet. has anyone else delt with this wierd dizzy fainty feeling? thanks. This all driving me nuts.

[KeepingUpBeat]

Hi Maire3761 yes that lightheaded feeling on rising seems to be one of the many symptoms of SLE. I was diagnosed in October 2018 with following bloods; ANA 1:1280, ENA positive with Ro/SSA positive. I also have Fibromyalgia and possibly Sjogren, I've seen Rheumatologists and Dermatologists since initial diagnosis but blood results are never explained at appointments. Bloods results from last clinic visit in February 2019; mildly elevated CRP (18) and ESR (25) again don't ask me what these results mean I'm only the patient. They are taken from letters sent to my GP after each hospial appointment which I have been copied into. As a new symptoms appear I make a note for discussion at my next clinic visit in June. I have all the symptoms you describe in your post as well as others. I'm not sure what is the cause of dizzy/faint feeling. Hopefully, others who respond to your post will be able to shed some light on this peculiar symptom. Do you get headaches, I do recent symptom? Have you discussed dizzy/faint feeling with you hospital consultant?

All the best

[maire3761 in reply to KeepingUpBeat]

yes I have a headache probably 3 times or more a week. I also have constipation, and pcos. I haven't discussed it yet because it only occurs for a few days and then goes away. they just called me and told me my echo and calcium score are within normal. its crazy I feel like my heart isn't normal. it doesn't take much for me to get out of breath.

[Chanpreet_Walia LUPUS UK]

Hi maire3761,

Welcome to the LUPUS UK HealthUnlocked community. We offer a free information pack which contains factsheets, guides, a list of helplines and a list of LUPUS UK Contacts. You can chat with our Contacts over the telephone; most of them have lupus themselves. They are not medically trained but are there to offer support and understanding. To download or request a pack, click here lupusuk.org.uk/request-info...

Has your doctor discussed the next point of action? Have you been referred to a rheumatologist?

A positive ANA test result confirms that you have an autoimmune disorder. dsDNA antibodies are specific for lupus. To find out what criteria and tests need to be met in order to make a diagnosis of lupus, read our blog article at lupusuk.org.uk/getting-diag...

Joint/muscle aches and pains, flu-like symptoms, headaches and extreme fatigue are all common symptoms of lupus. To read our blog article on ‘pain management’, visit lupusuk.org.uk/pain-managem...

According to The Lupus Encyclopedia, if you get light-headed when you stand up, this could mean that your blood pressure has dropped, or you could be dehydrated, you could be anaemic, or you could have a nerve or heart problem causing problems with your blood pressure. We published a factsheet on lupus, the heart and lungs. You may wish to read this at lupusuk.org.uk/wp-content/u...

Please keep us updated, wishing you all the best.

[maire3761 in reply to Chanpreet_Walia]

thank you so much. I have a appt with a rheumatologist in may. I have been trying to get in sooner but a new patient appt is hard to get. they said my echo was fine. I have a stress test on the 15th. it doesn't take much before I am out of breath and then when I start I get all faint feeling.

[Chanpreet_Walia LUPUS UK in reply to maire3761]

You're welcome. If you are looking to get an earlier appointment, it is worth ringing the rheumatologist's secretary to see if there are any cancellations from other patients which you can fill :). All the best.

[maire3761]

Finally got to see the rheumatologist yesterday. he did more blood work on me. My ALT is still high, high hematocrit, hight monocytes absolute. Kidney function rate is 80. He listed me a connective tissue disease. He ordered a Anti-DNA antibody, double-stranded. I also had a contrast ct of my lungs to check for a clot or fluid.

[maire3761]

The doc started me on plaquenil 200mg twice a day. Also I have noticed when I'm outside (not in the sun) in the heat my symptoms get worse. anyone else have this problem?