Chronic pain can cause the blood pressure to rise to a dangerous level. I also leads to a more sedentary life which will cause a slow death. The adrenal system goes into distress from the constant struggle with pain. That is the point, no one gets "pain" as cause of death because other systems of the body fail under the constant assault of pain. But the underlying cause is the pain.

Just fyi chronic high blood pressure causes kidney damage and enough if that causes them to fail. So high blood pressure is very damaging and not only to the kidneys, your heart and lungs take a hit too. It's a cascade of events. Not trying to be a smartass , just wanted to contribute to your very interesting conversation.

OldCPer. you hit the nail on the head, "" Now days people expect to be given narcotics if they have pain, and most of them have a predisposed mentality that they can't handle the pain without them." Some people actualy believe the are guaranteed pain meds in the
U. S. Constitution. I guess they didn't go to school long enough to learn what the Bill Of Rights actually says.

I know you weren't OCP. But sometimes I feel like people question may pain, and my pain levels because there's no MRI to point to in order to prove my case. I just have pain left over from a once documented injury. I get questioned about it a lot from the doctors. They keep on telling me that I should not have chronic pain from just two messed up veins. I know that one day the docs might not believe me and cut me off of my meds

I've been a bit nutty in the head too lately. So my posts can get pretty interesting. Thank you guys for contributing to the topic. Hugs everyone.

It's so odd to read this but I have my CP appt tomorrow and was going to ask my doctor about amputation of my left foot and lower leg. The RSD just won't quit since the med cut. I know that when I was diagnosed 19 years ago, the Physical Med doc said it wouldn't stop the RSD. But...it's been 19 years. Between my arthritis knees and arthritis in L4 and L5 and the spondolothysis in my back, I've had it. The back has gotten worse and worse and i thought I had that part, at least, taken care of. I was diagnosed way back in 1987 at 18 and since I hated the pills and had an active lifestyle, I did Physical Therapy until I found a wonderful chiropractor.

But now the pain is interfering with my life to the point that my 7 year old keeps asking me if I'm going to die. He had asked this when seeing me react to the news of the CDC guideline change, but we both assured him I'd be fine. As I haven't been able to keep up with him this past month, and have spent WAY too much time in bed or carefully arranged on the sofa, he's no dummy. He sees me vomit from pain, he sees me cry even though i thought it was hidden well. I'm SO glad he's back in school.

So, I expect to hear no to the amputation idea, but if I could get rid of the RSD affected area, I think I could handle the other pain on a lower dose. This is new to me. 19 years of good pain control and working and raising a family, to about 50% change in function. I know amputation is drastic, but the RSD pain is just mind-blowing. I'd forgotten how bad, as I always had proper pain control. We'll see what the doc says, but I'm open to it. I imagine it all the time. I even dream at night sometimes that something or someone pulls my leg off or cuts my foot off.

So while I don't know if pain can kill you, I am looking for other solutions. How do I keep my life? They do wonderful things with prosthetics and I'm not worried about what people think when they see me. I know that my 1st doc mentioned that the RSD would manifest in phantom pain, but that can't be as bad as the RSD pain.

Anyway, I wish you all a pain-free existence. I am just looking for a solution to this, and honestly, since I've been lucky to have the RSD contained to one area, MAYBE it would work? It's affecting my sleep so I'm SO not making sense, I am sure, but my subconscious seems to be suggesting it. Also, I'm getting nauseous a lot from the pain, not as violently as I do with my kidney stones, but it builds up gradually. I, too, have wondered if I would die from all this, though I am pretty sure I won't. I just am a solution oriented person, and hoping we find one. It's been the past 2 weeks that I've had the super extra pain, so I'm not sure what that is about as it isn't even cold yet.

Good luck to all!

jenthalia, amputation may well create more pain and other issues. It is not a sin or being a bad parent to not be able to run after a 7 yr old like you could in the past. It takes time, but adjustments can be made. Use this situation as a way to teach your son how to handle difficult life situations.

Jen, I can't not chime in on this...as I've said I had these same thoughts years ago. I went from a High School Sr. on the Varsity Volleyball team, Varsity Track Team, in Marching band...to barely managing to walk at times at the ripe old age of 17....and the pain was non-stop with no narcotic meds for years through, I've had 15 bilateral knee surgeries now. One rebuilt my left knee and replaced my tibia with cadaver bones, screws and rods. I could walk, but the pain, although better was still there, but I've got better solutions to treat it now. Unfortunately from the 30 surgeries I've had all over my body I've developed Peripheral Neuropathy, at times my legs feel like bees are stinging and burrow into them, and there's not anything I can do to stop it, except massage the nerve site and grit my teeth until it stops.

Dr.'s are not big fans of cutting off healthy limbs and for pretty good reasons. Phantom limb pain is a very real thing and it can be its own specific kind of hell. To have excruciating pain in a leg or arm that isn't even there is terrifying and there's not much you can do about it. For some it stops within the first year, for some it never does. I have a friend who lost his arm from below the elbow down and he got a prosthesis so he could function. But the phantom limb pain was so bad, it was almost as if the crushed arm was still there and he suffered greatly. After a couple years he saw a Psychiatrist that specialized in phantom limb pain and amputation and the way my friend finally was able to stop the pain when it started was to take something sharp and stab his prosthetic arm, (he typically carried a metal letter opener around), this broke the signal between his brain, pain neurons and the nerves that used to serve that arm and stopped the pain. But I can tell you, living life having to stab your fake arm every time the pain flares is not a picnic. It has effects on his well being, mentally and emotionally.

I understand the want to run and play with your child. I was still able to do that some with my 26 yr old son....but I've never ran, or chased, or roughhoused with my 17 yr. old son because my joints, bones and muscles can't take it. And it's been very, very hard to have to sit on the side lines, so to speak and not get to have that kind of relationship with him. We do other things like fish and we're board game freaks...but its different.

I hope that your Dr. finds some answer that can help you get through this, some way to reduce your pain. Take care and I hope that your visit brought you some clarity today.

I left a reply this afternoon but I don't see it. Weird. Basically, I was saying that it does FEEL like you're going to die, and that can affect your BP, etc. I also said that the additional pain has me dreaming at night of someone cutting my foot off or pulling it off. Oddly, OlderCPer noted amputation, just as I am researching it. I see my doc tomorrow and want to know if it is a viable option. I know my 1st doctor said there would be phantom pain, but would that be as bad as RSD pain?

I'm seriously wondering, with all the new things they do with prosthetics, if I can just get the RSD cut out, like they do with cancer. Then I'd still be able to work, be a good mom and wife, etc. And then I wouldn't worry as much about the spinal arthritis or arthritis in knees, etc. Maybe the new dose would cover those pains if the RSD were gone?

I know it FEELS like dying sometimes. For instance, EVERY kidney stone I've had in recent years feels like what I expect death to feel like. I don't think we, as CPers, die from pain. We might die from things associated and other issues, but not the pain exactly. Of course, I have NO idea if that is true.

Right now I'm looking at what I can do to overcome all this pain. My 7 year old NEEDS me. I NEED to work. So I'm doing a lot of research on pain, the new guidelines, and even amputation. Tomorrow we'll see what the doc says. I just want to go back to a normal life. Well, I'll never be normal, but I want to be more active and not dealing with all these extra problems. Whatever he says, I'm open.

I hope you all are having a low pain night. :)

Jen your post is up there, that's what I was directing my post too, yours that talked about amputation and your limited abilities with your son. Your post is 1 up from mine.

As for a Dr. being able to cut out the RSD....here is the official definition of RSD:

Reflex sympathetic dystrophy syndrome (RSDS), also known as complex regional pain syndrome, is a rare disorder of the sympathetic nervous system that is characterized by chronic, severe pain. The sympathetic nervous system is that part of the autonomic nervous system that regulates involuntary functions of the body such as increasing heart rate, constricting blood vessels, and increasing blood pressure. Excessive or abnormal responses of portions of the sympathetic nervous system are thought to be responsible for the pain associated with reflex sympathetic dystrophy syndrome.

There's not really any way that a Dr. could "cut out" part of your Sympathetic Nervous System, as they don't really know what part of it causes the pain in different parts or what causes the RSD to spread to other limbs or parts of the body for no apparent reason. Its one of those mystery illnesses that people really, really want an answer to...unfortunately its hard to tell what part of the Sympathetic Nervous System is mis-firing.

I have a question and I hope you don't get angry at me, if you do it's okay I can take it.

You've been on a very high dose of narcotics LA and Breakthru for a very long time. Have you ever even considered trying tapering down off the narcotics so that you can get to a base level and see what your true pain level is? When your on High doses of strong narcotics like Morphine for years, it can cause your pain receptors, nociceptors to feel more pain than what your body really has, while at the same time lowering your tolerance to pain.

Many times when a person takes a break from the Narcotic/Opioid meds by tapering off of them, it lets the brain re-set and the pain receptors start fresh to tell what is your actual pain and not any rebound or increased nociceptor pain. I know its scary to imagine going off the meds, even for a short time, but it might be what could help you get your pain under control. Just a thought...

I know personally by doing this I'm able to keep my narcotic meds to a lower dose and have pretty good management of my pain from multiple illnesses.

Take care,

Jen-- it just makes me terribly sad to think of you really thinking amputation is the answer. But it's another example of how awful I think these new pain guidelines are.

The have cut down my pain meds, but I think I can handle it, since I've been on relatively little. It does make it hard for me to do a lot of stuff, but since I'm on Ssdi, and live alone, I can listen to my pain, an lie down when I'm hurting too much. I can get more pain relief with chemo or prednisone, but I really think it's healthier for mr just to use the pain meds. I keep think it would be ironic if I got pushed into back surgery and ended up in worse pain than I am now for politics (I don't think hard core druggies are that interested in Tylenol #3.

I'm really so sorry that this is causing you so much distress, physically and mentally. Do you have a shrink? Maybe you could get some support there, but the are pretty enamored with Congnative approaches, which I am pretty sceptical of.