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Arachnoiditis: Looking to talk with others

Spine Health | Last Active: 18 hours ago | Replies (446)
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@laurenseavertson

Archie lauren here Been having vert severe nerve pain, not relieved by Oxycodone or gabapentin I have been having Loss feeling in my feet & today woke up with very little feeling in my legs, feet. Very afraid this will get worse & i will lose my ability to walk & care for myself. Exercise, seems to help me feel my feet & my anxiety is rampant. Since i was paralyzed for 16 months, from MRSA in my spinal cord, not anxious to b e back in a wheelchair Have U experienced any thing like this? Pain was so severe yesterday & took more pain medicine Would Medrol dose pac help this? On gabapentin forever & can't tolerate Lyrica My neurologist booked & i don't have telehealth until feb 4th Couldn't sleep ( 2 hours) Every one says i need to curb my anxiety! Can u share your experience with this? Any one had similar severe nerve pain with numbness & loss of feeling? Is this a predictor or more to come? Seems to be intermittent & progressing Very hard not to get anxious. Pain was so bad, i thought i was going to pass out. Referral to Barrow's neurological coming. But, it's hard not to see this progression of symptoms. Any feedback or thoughts on this situation? Current neurologist says nothing can be done except steroids for AA Thanks

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archie2 | @archie2 | 6 days ago

Hi Lauren—Archie here—
Well, I just had my daily oatmeal so I guess not everything is in a bundle. I get what you say about anxiety- „oh just take it down a notch“ friends say. Well, easy to do is easy to say. In the context of MY experience, what you’re going through is very unusual—that doesn’t mean unlikely, just unusual. When medical practitioners say that AA is progressive, in general they are talking on terms of over YEARS, not days or months.
There is a „psychological overlay“ to everything we experience. It seems you’re being told (subtly if not explicitly) that you are overstating your symptoms because of your worry and anxiety. Take a breath. What you’re describing may reflect an entirely different diagnosis from AA. At this point, it seems you’re going to have to wait for the consults they have set up, and look at them as an opportunity to understand your pain process from a different perspective. If possible, get some sleep. This can help you deal with all the other variables. It’s hard to be more specific without knowing deeply about you. But we’re here, we know pain, we know the unfairness of having intractable pain and no help on the horizon. Don’t give up hope— you have appointments coming soon. Best, Archie

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