[wisewoman]

I have realized first of all that my doc of several years is a quack. He is by by and I am meeting new one on 17th. So, here goes. I can't help but be long winded, sorry.

1. As a child I was given a lot of pain as well as being neglected so my mind got confused about pain. It took me years to be able to define pain. Like oh I have a head ache.

2. So I learned more and more how to define pain within the last 12 years. As it happens I also have had more and more pain from a broken back in childhood mainly, but other things as well.

3. When I have to ask for help with pain I feel frightened. PTSD The mother did not ever believe me and I learned to play dead to keep my body, but also my soul alive. Today I fear I won't be believed and get teary just talking about the pain and asking for help. It didn't help that Dr. Quack saw that as an emotional thing that meant I did not have pain.

4. My pain is getting worse. I have multiple issues that I work very hard on with PT, massage, acupuncture. But I need more drug help as time goes by.

5. I get stuck in the fear and not being believed and guilty conscience thing. I have such a guilty conscience I often think people are going to think I am shop lifting and I never even have. Please, does that make sense? I worry the doc will think I want drugs to get high or won't believe me.

6. Our culture is such that the above dues happen. If docs can't say definitively that xyz are causing my pain they are hesitant to help me with it. People do drug seek to get high. It is a major problem. I do not.

7. I was referred to a rehabilitative Psychologist recently who is actually the one who suggested quite firmly that I leave Dr. Quack; He told me something old intelligent me never knew, methadone does not make you high. There is no high to get. I felt relieved to hear that. Like I was believed and vindicated.

8. I spoke with a pain specialist w/whom I used to work. She told me it was absolutely logical and normal and good practice to want extra meds for break through or new pain to have on hand. She also agreed that going to E.R. for pain management was not a good thing. They have to assess is you are drug seeking and you get more trauma. I feel it's humiliating to me. Last time I went, and for the first time ever I could not be silent with my pain. I moaned loudly. The whole E.R. could hear me and it took them an hour to give me a shot in the ***! HUMILIATION Not the *** part, the moaning and the waiting, the dependence.

9. Ahh, alas the largest issue. I hate depending on anyone for anything. I have to depend on a doctor to give me pain meds and what if they don't believe and all of the above. It is a major trigger for the PTSD. I have never been one to feel pain as others do. I can have a lot more pain then most peers and maybe not even notice and then it's so out of control I need major drugs to go back. it is better to keep pain managed rather then allow the peaks because then it takes more to manage it. Am I making sense?

Do you all get this? Do you have advice to offer? How do I approach new doc on pain? I really need new doc to believe me so I don't get PTSD triggered. I need them to know that I do everything I can to help with pain but I still have it and meds will need to be increased at times.

It's odd that when I go to large teaching hospital 1.5 hours from home I am treated with respect, never questioned. People are smiling there, they are so polite and compassionate. That is where my pain clinic is but they want you to have a primary to go back to for mainteinance so you can't use them if your primary is not on board.

FEEDBACK NEEDED! THANKS.

[Perna]

I know about the guilty conscious thing; I still am prone to walk through stores when I'm shopping with my hands very much out in the open, slightly elevated so any store detective can see what I'm holding

Methadone should be treated differently but isn't quite yet; a doctor can still lose his license prescribing it to you. It's a narcotic and has a narcotic's effects; though it blocks opiates so "real" druggies don't like it as well, it's still misused, etc.

This person's site is helpful understanding all there is to about methadone and they had a back injury too:

http://members.tripod.com/~jbabs714/meth.htm#forpain

[CedarS]

I so hear you! I can relate to so much of what you are saying.

I got teary eyed once when a health care worker said that I did not impress him as drug seeking to get high at all. Meant so much to me.

Everything you have written makes sense.

I have both PTSD and chronic pain also. I don't know if I have any good advice. Other than that I want to say that -they- (the health care people) need to fulfill their end of things. Your new doc needs to be like your pain clinic people.

[wisewoman]

Thanks cedarS THAT means a lot to me. Perna, you amaze me with your links. I found the link and it's link so informative. I am not crazy, that is why people act like I have a green head. CedarS. You could identify with all of it? Can you explain more? I want to understand more for my own self so maybe different words gives me a different angle to understand through? Anway, thanks guys.

[CedarS]

Sure, I can give it a try with explaining more. I'll go through your initial post and I put (s) at the beginning of every passage that is mine.

1. As a child I was given a lot of pain as well as being neglected so my mind got confused about pain. It took me years to be able to define pain. Like oh I have a head ache.

(s)Me too. I was badly verbally and psychologically abused especially by my mom. Plus I'm a shaken baby and when I was older my legs and feet were often kicked. Also being ill wasn't okay, my dad especially seemed to look down upon we three girls when we were sick.

I wasn't allowed to have my own sense of self, my own boundaries. As a survival skill I learned to stay out of my body often, I had to space out a lot.

2. So I learned more and more how to define pain within the last 12 years. As it happens I also have had more and more pain from a broken back in childhood mainly, but other things as well.

(s)Me too, I've had to learn basic building blocks, how to be in my own body and experience, how to define what I am feeling.

I have fibromyalgia, chronic fatigue syndrome, migraines, and possibly some arthritis. Being abused probably didn't help with any of this.

3. When I have to ask for help with pain I feel frightened. PTSD The mother did not ever believe me and I learned to play dead to keep my body, but also my soul alive. Today I fear I won't be believed and get teary just talking about the pain and asking for help. It didn't help that Dr. Quack saw that as an emotional thing that meant I did not have pain.

(s)Exactly. A way for me to survive was to be invisible. But I couldn't depend on that either, since my mom accused me of all sorts of things that weren't actually happening. I could be spaced out, gazing into space, not thinking of anything, and she would claim that I was being condescending and thinking mean thoughts about her. I was ruining her life. So bring me to current time - I'm supposed to detail all my symptoms but not upset the doctor, not supposed to make them feel that I am bad. I'm supposed to be invisible but only in the right way. I'm supposed to be brave and chin up but also tell them the truth. On and on, it can be exhausting. It is exhausting.

"Emotional thing" means that I'm even more bad. I'm obviously just malingering, I'm unstable, I don't know reality. Of course this is a trap because if I try to prove I'm not bad, well then.......I obviously am.

4. My pain is getting worse. I have multiple issues that I work very hard on with PT, massage, acupuncture. But I need more drug help as time goes by.

(s)My pain is getting worse too. I've used various things and I'm lucky if at least the edge is taken off. I'm able to be stable with how I've crafted my life, which includes that I'm not employed.

5. I get stuck in the fear and not being believed and guilty conscience thing. I have such a guilty conscience I often think people are going to think I am shop lifting and I never even have. Please, does that make sense? I worry the doc will think I want drugs to get high or won't believe me.

(s)Yes, this makes complete sense. I was taught to not trust my own experience. I'd get completely hypervigilant including about my own thoughts. And according to my mom I had some sort of supernatural evil power, so maybe I secretly do want to shoplift, maybe others can sense this about me, maybe I am evil. (Thank god for lots and lots of therapy on all this.)

6. Our culture is such that the above dues happen. If docs can't say definitively that xyz are causing my pain they are hesitant to help me with it. People do drug seek to get high. It is a major problem. I do not.

(s)I fully agree. It is one thing to have an acute visible health challenge: "Oh you poor thing you broke your arm and you have a cast, here, let me get that door for you.". Another to have a chronic invisible illness: "Maybe you just sit around too much and need to cheer up. Damn, you're annoying. And you're female too, typical.".

7. I was referred to a rehabilitative Psychologist recently who is actually the one who suggested quite firmly that I leave Dr. Quack; He told me something old intelligent me never knew, methadone does not make you high. There is no high to get. I felt relieved to hear that. Like I was believed and vindicated.

(s)I'm glad that rehab psych is in your life. You are worthy of being believed.

8. I spoke with a pain specialist w/whom I used to work. She told me it was absolutely logical and normal and good practice to want extra meds for break through or new pain to have on hand. She also agreed that going to E.R. for pain management was not a good thing. They have to assess is you are drug seeking and you get more trauma. I feel it's humiliating to me. Last time I went, and for the first time ever I could not be silent with my pain. I moaned loudly. The whole E.R. could hear me and it took them an hour to give me a shot in the ***! HUMILIATION Not the *** part, the moaning and the waiting, the dependence.

(s)Yep, I've read up on pain and practice of pain relief here in the states and the pain specialist is completely correct.

9. Ahh, alas the largest issue. I hate depending on anyone for anything. I have to depend on a doctor to give me pain meds and what if they don't believe and all of the above. It is a major trigger for the PTSD. I have never been one to feel pain as others do. I can have a lot more pain then most peers and maybe not even notice and then it's so out of control I need major drugs to go back. it is better to keep pain managed rather then allow the peaks because then it takes more to manage it. Am I making sense?

(s)Asking for help with chronic "invisible" pain is one of the last things I want to do, because it can be exhausting and traumatic. I'm possibly dealing with burnt out hurried people who don't want to deal with me and who even might have negative thoughts about who they think I am. This is like volunteering to be with my mom again. I don't want to but sometimes I need to. I do what I can to support myself, I work on not stressing myself out with how I am thinking, but facts are facts, going to a doctor with chronic pain can be a real sucky experience.

Managing pain is the ideal but we aren't always given the tools to do so. Then things get too intense and we might be blamed for that. This can feel frustrating and like a trap. No matter how fast we dance, it ain't fast enough.

A therapist told me that I have a double whammy with PTSD and chronic pain because they both can be traumatic in the same way. With abuse I never knew what was going to happen next while knowing that the worst was probably going to happen. With chronic pain I never know how the pain levels will be yet at the same time I know that most likely I will indeed be in pain.

I tend to be hypervigilant although I've come a long long way in healing. I've tended to blame myself. I've taken responsibility for stuff that wasn't my responsibility. I've not known also that it is really really okay for me to have preferences too.

We get to have people on our side, on our team. No guarantee of finding good people though. It can all feel to me like a gamble, a bad one, a risk, a making myself vulnerable so I can be seen and possibly helped.

(((hugs)))

[Perna]

</font><blockquote><div id="quote"><font class="small">Quote:</font>
Some people's chronic pain stems from a traumatic event, such as a physical or sexual assault, a motor vehicle accident, or some type of disaster. Under these circumstances the person may experience both chronic pain and PTSD. The person in pain may not even realize the connection between their pain and a traumatic event. Approximately 15% to 35% of patients with chronic pain also have PTSD. Only 2% of people who do not have chronic pain have PTSD. One study found that 51% of patients with chronic low back pain had PTSD symptoms. For people with chronic pain, the pain may actually serve as a reminder of the traumatic event, which will tend to make the PTSD even worse. Survivors of physical, psychological, or sexual abuse tend to be more at risk for developing certain types of chronic pain later in their lives.

</div></font></blockquote><font class="post">

From: http://www.ncptsd.va.gov/ncmain/ncdo..._patients.html

</font><blockquote><div id="quote"><font class="small">Quote:</font>
Care providers generally assess chronic pain during a physical exam, but how much pain someone is in is hard to determine. Every person is different and perceives and experiences pain in different ways. There is often very little consistency when different doctors try to measure a patient's pain. Sometimes the care provider may not believe the patient, or might minimize the amount of pain. All of these things can be frustrating for the person in pain. Additionally, this kind of experience often makes patients feel helplessness and hopeless, which in turn increases tension and pain and makes the person more upset. Conversation between the doctor and patient is important, including sharing information about treatment options. If no progress is made, get a second opinion.

</div></font></blockquote><font class="post">

[wisewoman]

Good stuff guys, it is helping me to think more fully. Perna where do you keep finding links to whatever ANYONE is talking about. You are a librarian I bet!? ow in seriousness, I am sorry cedarS that you were raised beside me. Do we have the same parental units? It stinks that we can relate to each other but I am also glad that we can share and that does help a LOT. Perna, can you tell these docs to get their acts together? Thanks,

[nightbird]

it might also help to have a primary doctor who will agree to whatever the pain specialists recommend. this way, you get the pain spec. to recommend routine pain relief to be taken daily, depending on type of narcotic, say every 6 hrs., or some might be once a day.

then the pain specialist recommends a pill to take for break-thru pain as needed.

if your primary agrees to this, all you need to do is stick with the dosing schedules and you will be fine. order refills when directed. make no mistakes (since this is narcotic), do not lose medication. always put in a safe place away from everyone!

i don't know your age, but the younger one is, the harder it is to secure pain management that is effective. if you are over fifty?, or forty-five?, you have a better chance.

it also seems the pain issue should be treated one way, PTSD another- through therapy.

good luck to you.

your pain needs to be treated so that you can have a better quality of life. tell your pain specialist Dr. you are suffering, as is your family, and life do to this untreated pain.

[wisewoman]

I am older and I did have a doc who was giving me the scripts. He has been so difficult that I am off to a new one. I have been doing research on the PTSD and Chronic pain and there is a lot of info on the pain being just the emotions, depression, PTSD. It actually made me mad. I have been feeling down and more desperate since doing the research. The saving grace has only been cedarS posts understanding and adding more of what I did not say but feel. It is not my PTSD causing hip pain tonight. It is whatever it is and I am going to be stretching again as I just did a bit ago.

The info does not speak of the pain and managing it. My mind is pretty healthy, except for the fears around being believed etc. I can't expalin tonight. Thanks for your post.

[(JD)]

((((hugs to all)))

All pain is subjective.
There is no dividing mind and body. There is no such thing (unless you are discussing something like munchausen's) as "just" the emotions, depression, and PTSD - pain.

Fear of pain causes more pain.

How we address our pain (the actual words we use to define it, think it etc) helps form it. Be very careful, MINDFUL, of how you think about your pain and the words you use. A positive attitude will help train/retrain the brain in how it addresses this.

It's very difficult to help those with chronic pain in this respect: the pain patient, having to fight for validity, is so on the defensive often can't hear wise words regarding real help in "managing" his/her pain. Some things are just facts, not negative, not invalidating. The more information the pain patient has, the better equipped he/she is to win over the pain.

"Winning" doesn't mean total anihilation of pain. It means being able to have some quality of life while living with chronic pain.

The idea that you can use your mind, retrain your brain and how it interprets your pain, and suffer less is really a good thing. That each person has such a strong tool is positive. It's not invalidating at all. It gives hope that once you are able to fathom and learn the tools, the system, the methods to doing this, you will have more control over your pain responses.

Using hypnosis, for instance, can allow at least a limited time of "no pain." Well, of course your body still has cause for feeling pain, but if you are able to block it, or say through using a TENS unit..mixed up the pain message so the brain never gets it to "realize" it... isn't that ok? I mean, you don't have to feel your pain all the time, right? Just because you can gain some relief from the pain doesn't mean you are faking it...

Just thoughts...

from a chronic pain patient.

[wisewoman]

Sky, I think we can use our minds to help us define the pain in a manageable way IF we have good pain support so we do in fact know that no matter what it is manageable. I love my tens unit. I am stuck in the whole place regarding dependence. It brings terror into my very soul. For all of the reasons already mentioned. I do not, in fact feel my pain all of the time. I have gotten wonderful breaks and when I was aware of the hip, bum, leg thing tonight I was not freaking or getting tight, Just remembering stretches to help. I could have used the moist heat too and i didn't even need to.

We have in fact retrained our brains to interpret pain as something else, at least CedarS and myself. I did not feel pain or illness as a child. I stepped outside and watched. I have so many memories of this. Falling from a rope swing and getting rope burn along my thigh, inside by my pelvis, and of course my hands. I lay beneath the plum trees for a few hours. I believe I passed out since I do not remember much but laying and waking from the sound of an engine. My female parent's mother and step father was there and I was called a ***** if I spoke with him, played the silly penny games he played, oh my, sat on his lap. So on Sundays when they came I hid. I did not want another reason she would call me a slut or *****. I was 7ish, When I came down and told the female parent (why did I tell when I knew it would make me vulnerable?) She made a sound in her mouth and told me to put penut butter salve on it. Now if anyone has ever had a rope burn, try and imagine it down there. I lived with weeping open wounds for about 24 hours and then heavy scabbing in that most sensitive spot, scab on thigh rubbing scab on privates as I walked. I could hardly walk. I have had rope burns, or friction burns since them and learned how painful they are but thankfully I was removed from that initial pain by loss of consciousness. I think leaving my body helped with the healing pain as well. It's what we did to survive. Maybe as perna's research indicates, there is a trauma stored with the breaking of my back. I honestly don't know since I am unsure when it ocured. the ways that I have remembered falling on my head or being pushed through a door with my head etc are all painful. So I would have left my body and all of these memories have trauma. I guess EMDR would be helpful with this. i should at least try. It could simplify the pain to just be pain and nothing else.

Sky, I know that you too have fought hard for adequate pain control. No fun.

Here is my menu of resources. I alone can take meds, use pressure point release techniques, stretches, resting, moist heat, tens and any of these combined. With help I have body work-Chiropractic, massage, and will try a different type of body work this week, as well as acupuncture. ( I am trying a new person), This whole thing is about trusting that someone will believe me and give me pain meds because like it or not this is part of what I need. i take, once again, 3600 of nuerontin daily. I take herbal remedies, and I take otc meds. When it's not going away I add tylenol to my cocktail.

ASKING FOR HELP IS THE TRIGGER.

[wisewoman]

OOPs, I forgot to mention that I have this bone on one wrist that is a growth from arthritis. My thumbs have arthritis in the joints and my wrists have some weird nerve impingement. i forgot the word the doc used but a feeling of compression from the forearms. I have to wear soft or hard splints most of the time for comfort. That bone is hurting from the pressure of the splints. Have to have the hard ones indented. Just feeling my wrists right now.

[wisewoman]

So, I have heard today that I am supposed to be more Zen with pain. Okay....

[(JD)]

Have those splints readjusted by your PT. More "zen" with pain? hmmmm whatever works.



It's very important when working through triggers or actual memories to stay grounded, as best as possible or often anyway. Telling yourself, your body and mind, that those things are not happening now and you don't need to be on alert, you don't need to fear, you don't need to tense up or get angry or any of that, will help limit the associated pains.

TC.