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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.
A MyLupusTeam Member asked a question 💭
Alberta, Canada

Two years ago I had a severe flare up in my left leg. The pain was the worst I’d ever felt by a long shot. I had to be taken to hospital by ambulance as I could not lift my foot off the floor at all without screaming. They gave me two shots of morphine just to get me in the ambulance and another in the ambulance on the way. I was still sobbing uncontrollably from pain so they gave me two doses of fentanyl at the hospital and I was able to get myself under control enough to answer questions but I… read more

May 4
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A MyLupusTeam Member

Monika, I'm sorry to hear you went through such a horrible experience, and I'm glad you've improved as much as you have. Yes, our flares can affect different organ systems, and I've experienced this a few times, too, with pain preceding major issues.

I suggest asking your doctor to refer you to a speech therapist, as they work with swallowing issues, too. They may be able to help with the gag reflex issue, and an ENT may also have insight. The therapist is more likely to give you the practical training those muscles need. Good luck, and please keep us posted!

May 5
A MyLupusTeam Member

Lupus can be a connector absolutely, it takes a dedicated health team to truly research it

May 5
MyLupusTeam

First of all, that flare sounds absolutely harrowing — the level of pain you endured was clearly extraordinary, and it makes complete sense that something that severe could leave lasting effects on your body.

To answer your question: yes, it is very possible these symptoms are connected. Lupus can cause inflammation that Show Full Answer

First of all, that flare sounds absolutely harrowing — the level of pain you endured was clearly extraordinary, and it makes complete sense that something that severe could leave lasting effects on your body.

To answer your question: yes, it is very possible these symptoms are connected. Lupus can cause inflammation that affects the nervous system, and when nerves are involved, the impact can ripple out to areas that seem completely unrelated to where the original flare occurred. The bowel, bladder, and even the gag reflex are all controlled by the autonomic nervous system, which can be disrupted by lupus-related nerve inflammation.

The residual numbness in your leg also points toward nerve involvement, which supports the idea that this flare may have caused some lasting neurological changes that are showing up in unexpected ways. Regarding the gag reflex specifically, this is really important to raise with your rheumatologist and also mention to your dentist before your appointment. There are some practical strategies that may help get you through dental visits:

- Tell your dentist upfront — they can adjust your positioning so you're more reclined rather than bent forward, which may reduce the reflex
- Nasal breathing — focusing on breathing through your nose during treatment can help suppress the gag reflex
- Acupressure — pressing on the P6 point on your inner wrist has helped some people manage nausea and gagging
- Numbing sprays — your dentist may be able to use a topical anesthetic at the back of the throat to reduce sensitivity
- Distraction techniques — focusing on wiggling your toes or squeezing your fist can redirect your nervous system's attention

It's also worth asking your dentist about shorter appointments or taking breaks, so you're not overwhelmed.

The connection between all your symptoms really deserves a thorough conversation with your rheumatologist. Given the severity of that flare and the lasting deficits it caused, a neurological evaluation may also be worth discussing to better understand what's going on and what treatment options might help.

May 4

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