Undiagnosed severe pain

Hi @notgivingup17, I'm sorry to hear that the search for answers continues. You'll notice that I moved the message you posted today to the discussion you started earlier to have your story all in one place, so to speak. I've also added the discussion to the Neuropathy group.

Have you been diagnosed with neuropathy? You said you are losing muscle tone. Are you able to engage in physical activity like walking or light weight lifting?

No I just told my neurologist that I will not go back to that rheumatologist because he just looked in my mouth and said you don’t have Sjogrens in a rude manner.

I haven’t been diagnosed with anything yet but the pain sounds exactly like SFN and my neurologist said it sounds like it but after my skin biopsy came back negative in 2020 he did another EMG. The first EMG was done by a another neurologist my pain doctor sent me to, hurt so bad I couldn’t finish with the needle part of the test. The 2nd EMG showed low back problems so he sent me to a surgeon who requested a MRI that’s when the herniated disc showed up. I can walk but not far maybe a mile in pain the whole time. I’ve just finished PT after back surgery in May. I had to stop because I’m not getting better. The more active I do the worse the pain gets but oddly I can sleep thank God that’s the only time I get full relief when I’m lying down. Sitting is ok but I still have pain. Standing and walking is the worse pain ever in my feet, legs, buttocks, hips and my back tightness came after surgery. The muscle loss is in my buttocks, right side of my trunk and right hand. Sometimes I’m not sure if it’s fat loss too? I can’t afford that ive always been between 108 to 111 lbs. my husband is very helpful but he see’s me walking, cooking but have to take a break and sit while cooking but he can’t feel my pain so he doesn’t really know how bad and afraid I am. He hears me complaining all the time about it but if a person doesn’t have pain they don’t know what it’s like. Sorry for ranting.

Try an ENT for a lip biopsy

I haven’t been diagnosed with anything yet but the pain sounds exactly like SFN and my neurologist said it sounds like it but after my skin biopsy came back negative in 2020 he did another EMG. The first EMG was done by a another neurologist my pain doctor sent me to, hurt so bad I couldn’t finish with the needle part of the test. The 2nd EMG showed low back problems so he sent me to a surgeon who requested a MRI that’s when the herniated disc showed up. I can walk but not far maybe a mile in pain the whole time. I’ve just finished PT after back surgery in May. I had to stop because I’m not getting better. The more active I do the worse the pain gets but oddly I can sleep thank God that’s the only time I get full relief when I’m lying down. Sitting is ok but I still have pain. Standing and walking is the worse pain ever in my feet, legs, buttocks, hips and my back tightness came after surgery. The muscle loss is in my buttocks, right side of my trunk and right hand. Sometimes I’m not sure if it’s fat loss too? I can’t afford that ive always been between 108 to 111 lbs. my husband is very helpful but he see’s me walking, cooking but have to take a break and sit while cooking but he can’t feel my pain so he doesn’t really know how bad and afraid I am. He hears me complaining all the time about it but if a person doesn’t have pain they don’t know what it’s like. Sorry for ranting.

I have gone to 2 ENT because I have sinus problems as well. What is a Lip biopsy?

So sorry about your condition. I personally have never heard of what your are experiencing. Maybe a good physical therapist!?

@notgivingup17 Hello I'm a Mayo cervical spine surgery patient. I read your earlier posts about the herniated L5 S1 disc and that you had surgery, but still have pain. In another post, you had mentioned about a whiplash and a cervical spine issue. Can you share the findings of your cervical imaging? The nerve testing was fairly painful for me too. It is possible that cervical issues can affect lower body parts like legs. It did for me!

Has a neurologist found any issues connected to your cervical spine?

When my blood work came back negative for Sjorens I had a lip biopsy done. It’s not uncommon at all for a ENT to perform this. My ENT did mine. It’s the only other way to find out for sure if you have Sjorens.