That is horrific! Is it a constant pain, or a series of flare ups, or a constant pain that gets worse when it flares up? I suspect the last one. I don't even know what to say.
I'm 50. I have had severe pain in my knees for the last 13 years due to an eating disorder that I had that caused me to exercise up to 10 hours a day, every day, no matter what, for 6 years. I damaged or wore away the majority of the cartilage in my knees, so now if I'm not on pain medicine it's just pure hell. For some reason it seems to hurt me more at night when I'm trying to sleep than at any other time. When the pain first started, there was nothing they were doing that was helping it and it was literally making me lose my mind. I went through a period of time where I didn't sleep at all for months and I really thought I was going to die. Luckily, they finally found a medication that worked and made the pain stop long enough for me to be able to sleep again. Unfortunately, I can't remember the name of the medicine at this point. Once they got the pain under control, they manage to be able to switch me over to a very high dose of ibuprofen. I assume at some point I'm going to end up having to be on opioids or something to control the pain, if I live long enough, but for right now I can deal with the pain as long as I take the ibuprofen, 2400mg.
But I can't imagine the pain you must be in. Do they have you on very heavy pain meds, or do pain meds just not work for you?
I know the doctors told me that part of what happened to me was that I had some kind of problem in my nerves where I had pain at one point, but once the source of the pain healed, my nerves never got the message that the area was healed and they continued to send pain signals to my brain even though there was no reason for me to be in pain. I think this has been sort of corrected now, but not completely. I still have periods of time when I can't sleep because my knees hurt, no matter how much ibuprofen I take. When that happens, I have a stash of Vicodin that was given to my husband during his cancer treatment that he refused to take. I only take it when I absolutely need it because I absolutely hate it and it makes me nauseous and sick, but it does get rid of the pain and allow me to sleep. I know the doctor said it had something to do with my emotions also. I tend to have more pain the more emotionally upset I am. At one point, I was diagnosed with fibromyalgia, but I'm not sure that's exactly right. I believe fibromyalgia goes through your whole body, and for me (for the most part) it's just my knees that hurt like that. Of course, then about 5 years ago, I started getting the beginnings of arthritis. My hands get very stiff and painful and I have to force myself to bend them, particularly in the morning when I first get out of bed. When it started 5 years ago, it would only take me a minute or so to work the kinks out. Now it takes me nearly an hour of repeatedly bending my fingers and moving my hands, no matter how much it hurts, to work the kinks out. I know at some point in the future, if I live long enough, my hands are going to hurt all the time and I won't be able to work the kinks out of them anymore.
So I have all of these neurological symptoms, and all of these pain symptoms, and emotional symptoms and I believe they're all somehow related to each other. I'm not exactly sure how, but I know they're all related and I know they're all going to get worse the older I get. At some point, I may be in some kind of condition either physically or neurologically where I can't ctb without help. I intend to do it before I get to that point because I want to have control over my own destiny. I don't want to be stuck here in severe pain and unable to think clearly and not be able to do anything about it.