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Jackie
Multiple Myeloma Discussion • October 17, 2023
Experiencing an Unusual "Sunburn" Sensation?
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I was diagnosed with MM in 2019, had a autologous stem cell transplant 12/2019, had a Complete Response, then MRD negative since then. I'm on Lenolidimide maintenance. I was diagnosed with Ocular Myasthenia Gravis March, 2022. Beginning in early September, 2023 usually beginning in the late afternoon, the skin on my upper belly begins to feel like it has severe sunburn. Both thighs begin to feel the same, then my shins and upper feet and chin and cheeks. Sometimes it takes 3 hours for all the areas to feel like they have a sever sunburn, sometimes it only takes about an hour. When I touch the skin where the sensation is hot, the skin is normal temperature and normal color (no rash or signs of irritation). It feels like I fell asleep face up on the beach and sustained sunburn. I don't have any 'burning' sensations on the back of my body. These sensations have been happening every day and usually last about 6 hours. Has anyone experienced these types of symptoms? I belong to three MM Support groups, and no one in these groups has experienced the types of symptoms I'm experiencing. After my stem cell transplant the type of neuropathy I experienced was a numbness in my big toe, and stinging bottom lip. I have not experienced any other forms of neuropathy. Those who have experienced neuropathy describe tingling and/or pain in feet and/or feet. I am now taking Calm Magnesium powder to help me get to sleep. However, I have to wait until the sensation of heat calms down, usually by midnight. Does anybody have any ideas how to reduce the sensations of severe sunburn on skin that is not sunburned? I am working with my oncologist and neurologist but I'm hoping someone 'out there' might have some ideas that may help me get some relief.
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