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Real members of MyLupusTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Frequent UTI(s) back & side hurting 4 months, labs off like a rocking chair without legs and why does it take for ever to see every speciali

A MyLupusTeam Member asked a question 💭
Oxford, MS

By the time I see a specialist my condition will be worse. My primary frustrated, ER doctors frustrated and I am in pain and they limiting my pain meds for fear of destroying my kidneys. My older sister died of end stage kidney disease. This is psychology messing with my sleep pattern that's keeping me in a flair what do I do while I am waiting 3 months to see the kidney specialist???

August 12
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MyLupusTeam

This sounds absolutely exhausting — physically, emotionally, and mentally. Dealing with pain, confusing lab results, and a 3-month wait while worrying about your kidneys (especially given your sister's experience) is an enormous burden to carry. That fear is completely valid and understandable.

While waiting to see the Show Full Answer

This sounds absolutely exhausting — physically, emotionally, and mentally. Dealing with pain, confusing lab results, and a 3-month wait while worrying about your kidneys (especially given your sister's experience) is an enormous burden to carry. That fear is completely valid and understandable.

While waiting to see the kidney specialist, here are some things that may help right now:

- Contact your rheumatologist immediately — they can monitor your lupus activity and kidney-related symptoms while you wait, and may be able to expedite your nephrology referral
- Ask about urgent/expedited referrals — your primary care doctor can sometimes flag your case as urgent to get you seen sooner
- Track every symptom daily — pain levels, urination changes, swelling, sleep disruption — this gives specialists a clear picture fast
- Ask about a kidney-friendly pain management plan — there are options your care team can discuss that balance pain relief with kidney protection
- Stay hydrated — unless your doctor has restricted fluids The sleep disruption and anxiety you're experiencing can absolutely trigger and worsen lupus flares. This is real — not imagined. Mentioning this directly to your rheumatologist matters.

A MyLupusTeam member shared: *"I cannot stress enough how important it is to take the medications prescribed by your rheumatologist and listen to your body."*

You deserve to be heard. Don't stop advocating for yourself — bring someone you trust to appointments if possible. It genuinely helps.

August 12
A MyLupusTeam Member

I understand how you feel, my rheumatologists sent me for an MRI to measure inflammation after I had been on Prednisone for a month (producing no results and wasting my hard earned money), and they refused to look at prior biopsy results and sent me to their dermatologist, who had nothing to biopsy once I was able to get an appointment, 5 months later. It's always hurry up and wait, then wait some more, and no one to eyeball my symptoms when I need documentation and treatment.

August 13

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