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Has anyone hear of the term allodynia?
Yes, sadly. My problem is it hurts my feet just to have the sheet touch them
Welcome to Connect. Allodynia can be a symptom of several different nerve conditions, or it can occur on its own. Someone who has allodynia feels pain from non-painful stimuli. For example, a person may feel pain from a light touch or when brushing their hair. https://www.healthline.com/health/allodynia
I'm tagging @mloren @3michele3 @keyoeste1 as they've shared their experiences about very similar symptoms; you can view the discussion here:
"Electric Shock" type pain in my scalp! https://connect.mayoclinic.org/discussion/electric-shock-type-pain-in-my-scalp/
How long have you had symptoms of Allodynia, @indiana9? Have you had to make lifestyle changes to cope with this condition?
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If you go on Amazon, they sell piping structures to lift the sheets off your feet and they create a nice sheet free area for your feet.
I've had it about 5 years. They haven't decided exactly what I have yet. Been seeing different drs for about 4 yrs, Had emg and they confirmed I also have small fibre peripheral neuropathy in hands and feet. They're still trying to figure out why. My brother has similar issues, only his are worse. He's been diagnosed with sjogren's and has ivig treatments every 3 weeks.. I see another rheumatologist at the end of August.
Have you ever tried a different type of gamma globulin? Most infusion centers only stock one brand unless it is on back order. Ask your doctor about trying a different brand.
they haven't tried the ivig on me yet, just my brother. right now i'm on nucynta (tapentadol), pregabalin and a compound cream that contains ketamine and lidocaine, among other things
Hello @susanjc, Welcome to Mayo Clinic Connect. Do you or a loved one suffer from symptoms of Allodyna?
I have chronic demylnatating neuropathy
I feel like I am sunburned, but I'm not. My skin hurts all over, even when nothing is touching. For instance, I am wearing a short sleeved t-shirt and my arms hurt. My face hurts. I will see my regular physician this coming Friday. I am hoping she might have some answers. I used to have an occasional bout that would last 24 hours or so. I have now been in this flare for days. It saps all of my energy, and it is much harder to concentrate, even small tasks like pouring a cup of coffee and remembering to put it in the microwave to heat it. And I have sleep deprivation. What I have read so far since I joined this Mayo Clinic site is people have localized pain like this. My pain is all over my body. I rarely have migraines. Has anyone out there found a doctor and medication that helps?
Hello @gwen4, Welcome to Mayo Clinic Connect. I'm glad to hear you have an appointment to see your regular doctor this coming Friday. Hopefully she will be able to figure what is causing your pain and suggest a treatment. I have no medical experience but your symptoms sound similar to Fibromyalgia. Here is an article with questions and answers on the condition.
Mayo Clinic Q and A: How is fibromyalgia diagnosed?: https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-how-is-fibromyalgia-diagnosed/
Do you normally write down your questions for the doctor and take them to your appointment with you? I have found it helps so that I don't forget to ask them at the appointment.
Hi- I’m so sorry. This was my very first symptoms. Most doctors can’t or won’t help.
I’ve tried savella, kepra n Lyrica. Just recently I’m trying Nucynta witch actually works pretty good. Until now only opiates seem to really knock th burning n nerve pain.
Salon pas numbing or any non capsaicin works too.
Prayers for you as I know even the bed sheets hurt🙁
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