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mandiPNE (@mandee)

Pudendal Nerve Entrapment/Neuropathy/Damage

Chronic Pain | Last Active: Jun 18 4:08pm | Replies (448)

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@oregonbrad

I would like to keep in touch. I have never had a support system. I’ve pretty much turned into a hermit and rarely leave the house except for necessary appointments. I’ve been married for 27 years and have have 5 kids. I feel bad for dragging them all through this, it’s been hard on us all. Take the cbd, anything is worth trying to better your quality of life. I will keep in touch

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Replies to "I would like to keep in touch. I have never had a support system. I’ve pretty..."

Wow! You certainly have a large family! That can also be a stressor. And I certainly don't mean that in a bad way…just lots of things you'd love to do with them. And how difficult it can be when you're in pain. I have that with my grandchildren. I want to be able to spend more time with them, but the pain can be prohibitive. You have to find that balance which can be hard. A supportive spouse can make a world of difference. I've been fortunate and blessed with a husband who tries to help out when he can.
I was diagnosed last May by two neurologists with a very rare autoimmune disease called CIDP – Chronic Inflammatory Demyelinating Polyneuropathy. Nobody knows what causes it (same with Fibromyalgia). But my immune system has decided to attack me by eating away at the fatty coverings (myelin) on the nerves in my feet, legs, arm and hands so far. It causes the messages from the brain to become scrambled as it passes down the nerves to those body parts and back to the brain. It's messed up my balance and gait. I started tripping and falling last fall for no apparent reason. After EMG and electrical shocks, blood tests and several doctors, that's the diagnosis. Chronic, no cure, just trying to manage the symptoms with Gamma globulin infusions every 3 weeks. I'm just following the plan…
Will you be seeing any other doctors in the future that might afford you some other ideas for treatment/relief? I wonder if CBD oil might even be an option for you? Might be.worth checking in to. It's not easy living with pain 24/7. I admire your strength and tenacity. God bless you and your family… Sharon

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