Arachnoiditis: Looking to talk with others

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

I have had AA for years. But never like now. 3 weeks, lost all bowel control. I don't mean to repeat myself... But i am a mess. Loss bowel control, has caused me more problems with drug resistant UTI ( permanent supra pubic catheter) My kidneys, aren't good. I am a senior, on Medicare & Medicaid. Not one MD, has been willing to look at Dr Tenant's protocols. Even printed them up & tried to give to them. My PCP now handling the oral Decadron. I am afraid i'm one of those patients, who has gone down hill (with no return) I am in agony. Taking Percocet 10 mg TID. I just got out of the acute care hospital, for another UTI. Fortunately, this one wasn't drug resistant. Most are & i have to go the hospital for 5 or more days IV. I have only slept a very few hours from Steroids. I can't even get my thoughts together. Can't get out of bed. Hospital's only concern, was that i shouldn't get any stronger pain relief. Had several doctors, tell me i had no reason to be in pain....When i asked, they knew nothing about AA... Had admitting doctor give me Dilaudid. But some one came in & told me no pain mgt...I did get the Percocet. I was hallucinating & guess was from lack of sleep I was almost screaming out from pain. So i went to another Pain Mgt place , Dr was very nasty. He accused me of everything illegal that you can do with narcotics. By the way, was with same pain mgt for 14 years. never once had any problem with my narcotics. I know all about the Opioid crisis etc. Wasn't able to defend myself. So now new, nasty DR suggesting i get more steroids, from caudal region. My hardware is inflamed up to my arm pits. In the past, i know they tried this without success. I have massive scar tissue & it's impossible to get the medication, up, where it needs to be. Anyway, it takes 6 months to get into a neuro & they are also telling me, nothing but steroids. On Medicare & Medicaid Have 20 hours of help, but no one wants to work for the wages around here in AZ. I can't pay for treatments not covered. I live in a retirement community, with annual raises of 8 & 9 percent. Been here 18 years & they are good to me...but worried that i will end up on the street. This is the cheapest place in AZ & i am on section 8, but still subject to raises. They provide good food & will pick me up, off the floor, if i fall. Anyway, I can't sit up long enough to do anything.

I have 28 stairs from basement to bedroom and it's killing me.

No leg sreength.
To the person who had 7 injections, these Docs love those injections cuz they don't want to write narcs. Don't ever let those idiots near your back.

Why not your back?I get back injections every year for extreme back pain.

Larry, you are setting yourself up for Adhesive Arachnoiditis. Read the medical research on how multiple injections and multiple back surgeries are linked to developing this. And let me tell you, it is very painful.