Anyone else lose sensation in their skin?

[Heartofgold]

If I touch my hair, face, stomach and neck, I have trouble feeling what it is I'm touching and the temperature of it - like I'm numb... anybody else? And if so, have you found anything to help?

[Hidden]

This could be small fibre neuropathy. It doesn’t usually show up in nerve conduction studies. I have it as part of Sjögren’s but it can be ideopathic and it can be confirmed by skin biopsy. I’m afraid that, in my case at least, once numb, there is no cure.

[Heartofgold in reply to Hidden]

What seems to help best with the dry eyes (I'm assuming you get them from the Sjogren's)

[Hidden in reply to Heartofgold]

Hyloforte drops, punctal plugs and VitA POS ointment at night plus heated gel eye pads 10 mins daily and massaging lids.

[Heartofgold in reply to Hidden]

Oh wow, look at you, a doctor without a degree! That ^ sounds marvelous

[Hidden in reply to Heartofgold]

Or just a bog standard person with lived experience of one small but significant aspect of Sjögren’s😏. It’s the only aspect I’ve been taught by my ophthalmologist to manage very effectively🤷🏼‍♀️😎

[Bailey09]

Sometimes it feels as though I have no hand but it feels heavy as well strange feeling

[Heartofgold in reply to Bailey09]

I get like that too, but usually just if I'm dissociative.

[lorettapalmer]

Hiya, I have no feeling from my chin down, and

Suffer from FND. If I cut myself I don’t know about it until I see it. People have been asking around me at work who has cut myself and then say it’s me, before I know about it. I have been suffering for 9 years now, and have learnt how to live with it. I do find that if I’m more tired, like today when I have worked all week that the sensation is worse, especially in my legs. I also have to be careful when I get in the bath, as I can burn myself. Sorry I cannot come up with any good news, but take it from me that your not alone 😢

[Heartofgold in reply to lorettapalmer]

And neither are you! Thank you so much for sharing

[Chingona]

My left side feels that way, especially my face, arms and legs it’s been about two years of it like that and I guess you try to get use to it. If I drink alcohol or am tired or sick the sensation is heavier. It seems to have created a bigger issue for me because now My muscles are also wasting on that side because of the weakness and numbness. Some of my bones are rotating because the right side strength is pulling, the physical therapist did measurements etc, and explained it to me. But just the exercises they gave me aren’t enough and I’m anxious to run again.I decided I’m going to do muscle training with a electric muscle stimulator, I’ve only been doing TENS Which feels good btw.

[Heartofgold in reply to Chingona]

Is TENS the increment/level of stimulation, or is that something else?

[Chingona in reply to Heartofgold]

So I just had a conversation with my chiropractor about this. TENS is a setting they use for healing and relaxation, typical of what you would receive at physical therapy. There are multiple settings (on my device) and the chiropractor recommended I do muscle strength for the atrophy on my left leg. I’m sure if you google it you could get more accurate information on the settings for the electric muscle stimulator. I find the TENS helps with pain. Definitely recommend it!

[Heartofgold in reply to Chingona]

Yes! I have chiropractic care, and get that as well.

[Justdrea81]

Have you had any of your Vitamin levels tested? It turns out my B12 was low, my folate was low, and we've just discovered that my vitamin d is also low. My neurologist feels like my B12 wasn't "low enough" to cause the symptoms that I'm having. But, they have improved a lot since my B12 has gotten to a better level.

[Heartofgold in reply to Justdrea81]

I was actually thinking about this on my way to work this morning. Thank you for bringing that up.

[Tid3]

Yes , I have those symptoms,you cant feel the touch from your fingers to the feeling of your skin.It is frustrating to your mind.I have got used to it and accept it now , it's not a good feeling at all.