Peripheral Neuropathy caused by Lupus - Anyone?

Posted by janie66 @janie66, May 10 12:09am

Has anyone been diagnosed with peripheral neuropathy that was caused by lupus?

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Welcome @janie66, You will notice that we changed your discussion title to better describe your question and help members with experience find the discussion. While we wait for members to respond, you might want to scan through this search of Connect for discussions and comments for "lupus +peripheral neuropathy" - https://connect.mayoclinic.org/search/?search=lupus+%2B+peripheral+neuropathy.

If you haven't already seen this, the Lupus Foundation has some information on How Lupus Affects the Nervous System that might be helpful - https://www.lupus.org/resources/how-lupus-affects-the-nervous-system.

Have your doctors suggested or started any treatments yet?

REPLY

Hello,

After I got the vaccine for Covid-19 I started getting what I call pings all over my body. Even at the tip of my breast. My knee and ankle started to hurt really bad to the point that I couldn't walk. I started having problems with numbness in my groan area. Then finally neuropathy. This went on for 2 1/2 years.
I went to so many doctors and mri's were done along with xray's. Then I woke up one morning and was walking like a 100 yr old all bent over etc. I started using a cane (and a walker if I had one). Finally my I couldn't use my hands.
Long story short - I had nearly 26 test tubes of blood drawn and found out I had a very high rate of inflammation in my body. More blood work was done to find out that I have Lupus. Can you imagine being told you have Lupus at the age of 70.
My neurologist said that the inflammation from the Lupus being in my body so long damaged my nerves. I went from taking two medicines a day to 8. Plus I get intervenes medicine once a month.
So all you people that suffer from symptoms like me go to a specialist.

REPLY
@hello2

Hello,

After I got the vaccine for Covid-19 I started getting what I call pings all over my body. Even at the tip of my breast. My knee and ankle started to hurt really bad to the point that I couldn't walk. I started having problems with numbness in my groan area. Then finally neuropathy. This went on for 2 1/2 years.
I went to so many doctors and mri's were done along with xray's. Then I woke up one morning and was walking like a 100 yr old all bent over etc. I started using a cane (and a walker if I had one). Finally my I couldn't use my hands.
Long story short - I had nearly 26 test tubes of blood drawn and found out I had a very high rate of inflammation in my body. More blood work was done to find out that I have Lupus. Can you imagine being told you have Lupus at the age of 70.
My neurologist said that the inflammation from the Lupus being in my body so long damaged my nerves. I went from taking two medicines a day to 8. Plus I get intervenes medicine once a month.
So all you people that suffer from symptoms like me go to a specialist.

Jump to this post

I’m 73 and was diagnosed last year. I thought alcoholism caused mine but I was diagnosed with Lupus about 4 years ago. Didn’t know Lupus could cause it. Doctor just upped my Gabapentin and I just started physical therapy last week. I’ve quit drinking and am praying this will help. I’ve wondered about using a cane. I bought some great mats to use on my shower floor. I still don’t understand Lupus and neuropathy. Hope I don’t have to take any more pills. Good luck to you. On, I also bought a large wedge to put my legs up while sleeping.

REPLY
@johnbishop

Welcome @janie66, You will notice that we changed your discussion title to better describe your question and help members with experience find the discussion. While we wait for members to respond, you might want to scan through this search of Connect for discussions and comments for "lupus +peripheral neuropathy" - https://connect.mayoclinic.org/search/?search=lupus+%2B+peripheral+neuropathy.

If you haven't already seen this, the Lupus Foundation has some information on How Lupus Affects the Nervous System that might be helpful - https://www.lupus.org/resources/how-lupus-affects-the-nervous-system.

Have your doctors suggested or started any treatments yet?

Jump to this post

Ever wonder why all these fancy named diseases, what is the root causes, I would say are immune system ,when are immune system gets abnormal from a nasty virus other nasty viruses kick in like the herpes viruses hhv6, hhv7 ,no doctors like to talk about these ,one of my diagnosed problems was lichen planus hhv6,hhv7 both have shown to cause lichen planus, I also have diffusely heterogeneous thyroid now,gastritis, ulcers, diverticulitis ,glaucoma,nobody talks about viruses just the fancy names of diseases do your research

REPLY

Unfortunately lupus and other AI rheum conditions are known to cause PN. These AI diseases are thought to be triggered by environmental factors such as chemical exposures, viruses, etc, often on top of a genetic tendency. All causes of PN should be tested for so they can be treated and a cumulative effect of damage to the peripheral nerves can be avoided. It’s a very difficult problem to live with and causes serious disability issues for many. I know- I have it. I hope all PN sufferers research and learn all they can to help themselves. We must advocate for ourselves and be assertive about getting our needs met.

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