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I have the exact same problem of my hands, feet, and it is growing up both of my legs I mean my calves, thighs. It is getting excruciatingly worse by the week. It is the worst feeling ever tingling is so. and the tightning feeling is just unbearable. They just keep telling me that there is nothing that they can give me that they haven't already given me to help me with this. All of the tests that they have Brian such as MRIS and such show nothing so I think with half of the stuff they just think that I am crazy. The EMG shows the neuropathy but other than that I can explain why it's so bad my neurologist is says that it's a very rare form after peripheral neuropathy in the small fiber neuropathy. So I don't know what to do to help me. I cannot sit up for more than 10 minutes without it getting so bad that I have to go back and lay down in the bed to make my hands feel a little bit better. I can't stand very long without feeling the same way so I just get in my bed because I don't know what to do to be able to relax my hands I just keep my arms up pillows that's how bad it is.
Replies to "I have the exact same problem of my hands, feet, and it is growing up both..."
@pjc820 I'm so sorry for all your going through. I completely understand and experience what you feel. Last night and this morning was a doozy with my hands. Actually, I shouldn't be typing but I feel bad for you. I've soaked my hands in cold water (fill the sink). It feels good to put them between couch cushions
strangely enough. Applying pressure is kind of like massaging. Then there is heat...I use a microwavable heat packs on hands, shoulder, back , legs, feet, you name it.
Are you already on the typical neuropathy meds to help reduce some symptoms? Are you on a supplement protocol?
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@pjc820, You mentioned in a previous post that you have been diagnosed with Sjogren's syndrome and are taking Plaquenil. One of the more rare complications of Sjogren's can be peripheral neuropathy. You can find more information on Mayo Clinic's website here:
https://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/symptoms-causes/syc-20353216
Plaquenil (Hydroxychloroquine) has a known side effect of causing peripheral neuropathy -- see Foundation for Peripheral Neuropathy: Medications that can cause peripheral neuropathy -- https://www.foundationforpn.org/wp-content/uploads/2016/10/Medications-that-Can-Cause-Peripheral-Neuropathy.pdf
There is another discussion that might be helpful to meet other members discussing what helps them.
Sjogren’s Syndrome – Introduce yourself and meet others: https://connect.mayoclinic.org/discussion/sjogrens/
Have you discussed the treatment for Sjogren's with your doctor to see if there are any alternatives?