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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 15 of 15. This is the beginning of the thread.
Posted by kerria on June 28, 2005, at 23:40:33
Hi Everyone,
This is my first time here, we came from another place. it's important to find support because i don't support myself. i have DID and not the kind where there is a happy club inside where everyone is happy to help. there's a lot of conflict most of the time and it always feels like no one is on my side- not even me. My parts are opposites of each other and there is no 'host' or leader part. We live from day to day with the confusion of not knowing who i am because it keeps changing.
Today my T accused (for lack of a better word) me of my constant pain being 'real' but not from a physical cause - from body memories.
Could anyone have body memories that are constant- for eighteen months straight?
Has anyone here ever been in that situation?It's so so difficult. i've been in terrible severe pain since December 2003. Not one day of relief without medicine for pain. i've been tested, had surgery, done everything i could and the source of my pain hasn't been found.
i had gyn surgery in January 2004, there were a lot of adhesions and dr removed all the usual stuff that can cause pain. i was still in severe pain afterwards so i thought that i must have colon cancer. i had a colonoscopy. it was so hard for me. nothing was 'wrong' or abnormal except many white patches that mean irritation. i have too many immunogloblins in my blood, IgA i think but not enough, thank God, to need treatment- but that is not the cause of my pain, drs said after the workup. No one could find the reason why i'm in so much pain. It's constant and sharp, it's unliveable. It never stops except with medicine.
Then i went to a pain management Dr, who put me on pain medicine. i was already on 10mg oxycontin 3 x a day through my GP, who referred me to the pain management Dr. He gradually increased the dose to what i'm at now, a year later- 60 mg of oxycontin 3 x a day and oxycodone 5mg 3 or 4 x a day for breakthrough. i'm mostly out of pain until seven hours go by and it comes back. There are so many side effects of oxycontin at this high dose and i'm a little person weighing just 96 lbs now, usually 105- i can hardly eat because i have trouble swallowing. The migraines have been horrendous. i hate the medicine but i hate the triggering pain worse . Now i'm scheduled for a nerve block procedure-for the second time. The first time we cried too much- it made me move and Dr said it was too dangerous to do the nerve block. i have a hard time controlling because i have parts.
i'm in so much trouble.
Pain management Dr isn't going to keep writing prescriptions and has accused me of just wanting drugs but i need to be out of this terrible pain, it's not possible to live with. i don't know what to do, so so afraid of what will happen. i don't think that it's possible that severe constant pain like this could be trauma related.
Has anyone had long term pain like this because of trauma?
i know that the pain is real and it's physical, not psychological but the reason hasn't been found yet. T said that he is just using the idea as a hypothesis to find out.
Thank you for reading and any reponse.
i have trouble a lot about agreeing to write and get upset later. i hope there is a way to delete or move if there's a problem. i have to trust sometimes, it's so hard.i'm happy to find a place to get advice and find others experience.
thank you,
kerria
Posted by alexandra_k on June 29, 2005, at 1:22:35
In reply to Can body memories be constant? MT, posted by kerria on June 28, 2005, at 23:40:33
Hello.
I think... That after having a good hard look for a physical cause of your pain, it is sensible to have a look to see whether there may be a psychological cause. Because if there is a psychological cause then it saves you more pain and psychological anguish of invasive physical procedures that aren't going to help alleviate your pain.
Psychosomatic symptoms (that are caused by psychological rather than physical factors) seem just like physical symptoms from the point of view of the person who is experiencing them. There is no way for you to tell from your pain whether the cause is psychological or physical. To suggest that the cause may be psychological isn't to accuse you of making it up or anything like that.
It is a hard one...
Some people live in chronic pain. Sometimes it is largely psychological. Othertimes it is largely physical. Othertimes it is a combination of both. What has been found is that meditation techniques have been beneficial to the management of chronic pain regardless of cause. Have you done anything like this? It could be helpful to you.
I'm not sure what else to say.
I really do hope that it gets better for you.
Posted by Damos on June 29, 2005, at 4:12:10
In reply to Can body memories be constant? MT, posted by kerria on June 28, 2005, at 23:40:33
Hi,
Don't know if this'll help or not but I have read that some of those that have lost limbs from amputation and accident and are experiencing 'Phantom Limb Syndrome' still experience considerable pain in the absent limb. So don't discount the body memory possibility.
Hope you find some help here.
Posted by badhaircut on June 29, 2005, at 10:51:11
In reply to Can body memories be constant? MT, posted by kerria on June 28, 2005, at 23:40:33
kerria,
Your post hit me. Someone close to me lived with constant, intense pain that was seemingly untreatable. We were able to find better (though not perfect) treatment for it and discovered that part of the problem was her first doctor's treatment! So, I can sympathize. I know what oxy side-effects are like. And I'm very sorry – angry, more like – that your pain specialist is simply accusing you of drug-seeking! That's outrageous, but I guess it's an easy, face-saving fallback for him. Argh!
On the body memory question: other people may disagree from their personal experience on this issue, but I think it's impossible to disagree about the scientific evidence behind claims about body memories. There is *NONE*. Absolutely zero. There isn't even any physiological THEORY by which memories could survive outside the nervous system. (For other readers, we should note that "body memories" are memories of childhood physical abuse stored in muscle and skin cells and otherwise in the body, not the brain.)
I am sorry that your therapist is foisting this body-memory thing on you, even using an accusatorial tone. I am sorry that he appears to be experimenting with you, playing around with such a dangerous, destructive idea just "as a hypothesis to find out." Do you trust him and benefit from contact with him otherwise?
I don't know what your medical options are where you live or if you've tried this, but you may want to go to a pain clinic at a teaching hospital in a large university, if there is one you can get to. Also, there are a few large pain-specialty clinics around the U.S. that have many doctors doing a wide variety of techniques AND they have pain-management psychotherapists. A big clinic may be able to help you more than the jerk-sounding pain doc you described.
"You may want to keep looking for a better doc." That sounds like weasely advice, but if it's possible, it sometimes can be the key.
If you say the pain is physical, that should be it, no matter who your doctor is.
-bhc
Posted by Jen Star on June 29, 2005, at 13:20:28
In reply to Can body memories be constant? MT, posted by kerria on June 28, 2005, at 23:40:33
kerria,
I'm so sorry you're in so much pain! It sounds awful.Have you considered alternative therapies - things like acupuncture, yoga, alternative practitioners? I think they sometimes have insights into pain management and relief that traditional medicine doesn't, esp. if traditional medicine is not finding the source. Also, have you seen a nutritionist? Maybe there is something you're eating or not eating that is contributing to your pain? I know for myself that I get physical symptoms when I have caffeine or too much fat. I also have allergic reactions on my hands & mouth to certain soaps and toothpastes. Maybe your internal body is reacting to something you're ingesting?
I apologize if this is really not helpful. I know you're probably already done all this or researched it.
I hope you find relief!
take care,
JenStar
Posted by Jen Star on June 29, 2005, at 13:25:23
In reply to Can body memories be constant? MT, posted by kerria on June 28, 2005, at 23:40:33
hi Kerria,
I know for myself that stress causes weird body symptoms, like muscle twitches and heart palpitations. They're REAL, of course, but not necessarily caused by a disease. Although of course chronic anxiety may actually be a disease!What happened 18 mo. ago that made your pain start? Did you have an accident, injury, fall, or severe psychological trauma?
If the pain is there, it's there. Maybe you need a new doctor. I know doctors often have an arrogance and htink that if they can't find an issue, there is no issue.
Don't give up on yourself!
JenStar
Posted by kerria on June 29, 2005, at 16:58:31
In reply to Re: Can body memories be constant? MT » kerria, posted by Jen Star on June 29, 2005, at 13:25:23
Thank you Damos, Badhaircut and JenStar. i appreciate your thoughts so much.
The side effects of the oxycontin are worse than ever today, i feel like i have a bad sunburn on the outside and the inside of my body- like all the nerves are burning. my eyes hurt all the time and are so sensitive to light and a weird pain/ numb feeling in my chest and it's hard to swallow drinks or food.The last time i took a dose i only took 40mg instead of 60mg. and i think i feel a little better and it worked for the pain. i have to cut down, i'm getting so sick. i work in the heat and sun.am i going to start having withdrawal, i wonder?
i hope not a migraine - i get seriously ill with migraines, i was in the hospital last week with one after suffering heat sickness at work. i became too engrossed in what i was doing that i forgot to drink water and was so sick.To answer your questions,
The pain management dr was thinking as i was - that the direct cause of pain would be found. The DEA is giving him a hard time or he is afraid of that, that's why he is upset with me. Also because i wasn't able to be still during the first attempt to have the nerve block. When i consented to having it the dr said that i would have sedation. No sedation was given, Dr said some would be given later into the procedure but that's not good enough for us, my little part (Little parts always come when i'm overwhelmed)was already terrified and couldn't stop crying.
The Dr doesn't know or understand that i have parts that are hard to control.my T will help me through hypnosis, he can talk to them better than me, for the next time. The second nerve block is scheduled in about two weeks. i'm so afraid that i can't do it but i have to try, Dr said.
i could try to get another opinion, i already went to one Dr at a large hospital who is supposed to be one of the best in my area. He didn't think my pain was real. When i refused to give him the name of my T (because i didn't want to be labeled as a crazy person and not be treated, the pain is so bad) he refused to treat me. Maybe it was a mistake, i should have given him T's name - my DID - separation between parts is severe and i thought that i wouldn't have a chance of getting out of pain and i was too desperate.
T didn't really accuse me, it's been a battle going to t.- i'm always upset, we switch a lot and cry a lot - for months of weekly sessions i cried all the way through, it's so painful to live when i'm so separated. Then i blame T for not helping/caring. i leave T's office in crisis about 75% of the time. The only reason why i go to t. is to find out about what my parts think and are doing. T talk to them and we listen to the answers. Otherwise i wouldn't know what i'm doing.
The session on Tuesday wasn't bad, T said he'd work with me about the pain to see if it were connected to trauma- no pressure- right.
Then T did an amazing thing, he said that a stuffed animal in his office was real. and it was. T's office is magic because his animals are real and they care about me, they love me. i was needing some support from somewhere and he made them be real.
i know this doesn't make sense but at least it will be not as negative to go to T's office tomorrow, so that's good. We're having a hard time. T's trying to help.Jen Star, Before the severe pain started K.- a part was on a backpacking trip and having a hard time carrying the pack. It was too heavy and it had rained, making it worse. i fell and hit my lower back on the edge of a rock. i wondered about this injury but all the tests were ok- i had x-rays, there's some abnormality but it's not enough to cause pain i have, they said. Nothing else happened that i could think of. The dr thought it was due to the m-protein in my blood and gave pain medicine thinking it may have been myloma and it proved to be a low level, thank God. i just need to keep having tests and hope that it doesn't get worse but there's not a cause known for the pain.
This is a terrible situation. i've had so many tests and so much money owed to find source of pain. we even went to the Mayo Clinic . So many drs have said the abnormalities don't explain the pain. Other drugs like anti-inflamitory medicine (i found i'm allergic to Lodine, severe heart reaction to toridol and regalan), neurontin, doesn't help at at all. Nothing makes pain worse or better- it doesn't matter what i do, it's still severe. The worst is sitting or lifting heavy things. i don't think i could anything at all if i don't take pain medicine except cry in agony. i can't live with it .
Thank you so much for being there, for listening.
i'm so afraid about what will happen, now that i have to start getting off oxycontin and i'm worried about being able to have the nerve block in two weeks.
thanks for any feedback,
kerria
Posted by kerria on June 29, 2005, at 17:13:26
In reply to Re: Can body memories be constant? MT » kerria, posted by alexandra_k on June 29, 2005, at 1:22:35
Hi alexandra_k,
You've made a very good and comforting statement- if it does turn out to be psychological then i won't have to have anymore invasive procedures.
The only thing is how would that happen and happen in time - i can't not have the nerve block- dr won't treat me anymore i don't think.thank you for the vote of confidence, for believing me, it's so ackward having this pain and having a dx like mine. No one believes me.
actually my psychiatrist does believe me and didn't think it was a bad idea to be on the pain meds. My T believes me but can hopefully help- hopefully we can handle it without falling more apart if it is psych pain and i won't be left stranded in terrible withdrawal or in terrible pain that no one believes is real .thanks alexandra_k,
kerria
Posted by alexandra_k on June 29, 2005, at 21:56:20
In reply to Re: Can body memories be constant? MT, posted by kerria on June 29, 2005, at 17:13:26
> The only thing is how would that happen and happen in time - i can't not have the nerve block- dr won't treat me anymore i don't think.
Ok. That makes it hard. I really think... That they should have thought about the possibility of it being psychosomatic all along. I say this because people with DID tend to score highly on psychosomatic type complaints. Pain, migrains, gyn difficulties. Scoring highly on problems such as this is even part of the psychological screening tests for DID.
And these things do seem to be trauma related. Gyn difficulties and sexual abuse in particular.
But... It is really good that they have been taking what you have to say seriously and looking for physical causes too - because there really would be nothing more frustrating than having a physical complaint written off as psychosomatic without investigating physical causes - especially when the physical treatment for the problem is relatively straightfoward.
Could you tell the Dr that your therapist has suggested that it might be psychosomatic? How do you think he would respond to that? It is hard because psychosomatic complaints sometimes have a bad rap - people equate psychological causes with 'making things up'. But I really want to emphasise that THAT IS NOT THE CASE and whether the cause is physical or psychological the pain is still very real to you.
I just wonder how that suggestion would go down. Do you think he may write you off if you made it? This might be worth discussing a little more with your t. It sounds like you have a really good t who is trying to be sensitive and understanding about this.
> thank you for the vote of confidence, for believing me, it's so ackward having this pain and having a dx like mine. No one believes me.Thats ok. I believe you. :-)
Posted by kerria on June 29, 2005, at 22:57:14
In reply to Re: Can body memories be constant? MT » kerria, posted by alexandra_k on June 29, 2005, at 21:56:20
Hi alexandra_k and everyone,
Today i tried to come down on my standard dose because it's getting me so sick and i tried taking 40 mg instead of 60 mg. i found out that i can't lower the dose because i'm in terribly bad pain then. i can't even lower it. Now i don't think there's any doubt in my mind at all that it's physical pain. It's scarier for me to have that kind of pain because of trauma-related stuff but i don't think it could be the origin of it anymore.
At 3:15pm i took the lower dose , 40mg oxycontin instead of 60mg and was in terrible pain by 6:30pm and crying at 7:30, taking breakthrough oxycodone until i took the complete dose- 60mg at 10:15pm. i'm finally ok to sit up and write. It's definately physical but i have to find something else that works. i'm getting a bad reaction to the oxycontin even though it stops the pain. Nothing is as bad as being in the horrible pain, though. i can't understand how drs haven't found the cause of severe pain like this. It makes me afraid that they know why and won't tell me. Why would the pain management Dr give me a hard time though?
alexandra_k- i opted not to tell any of my Drs about my psych problems because of how people treat me that do know that i have DID. No one understands and treats me the same. i didn't want to have to struggle against all the 'It's probably all related/body memory thinking' that they would have. It's probably still a good way to go if i can continue to hide my problems/parts from pain dr. Having the nerve block is hard, though, but if T can help with getting the little parts to sleep, etc, by hypnosis the procedure may be the best thing to do. It may work to stop the pain.
Even cutting medicine back 1/3 made the pain unliveable. i will be in very bad trouble if Dr wants to take me off medicine before i have a successful block. i won't be able to do anything at all except suffer. i hope so much that it doesn't happen.Thanks for being there,
kerria
Posted by gardenergirl on June 30, 2005, at 6:18:33
In reply to Can body memories be constant? MT, posted by kerria on June 28, 2005, at 23:40:33
Hi kerria,
I'm sorry you are struggling with so much pain. I can't imagine how frustrating it must be to now be able to figure out the source. That would make treatment for it so much more effective.My mother has fibromyalgia. She used to take oxycontin, but switched to the Duragesic patch over a year ago. One of the things I learned from her pain doc is that sometimes a Tricyclic antidepressant, particularly Elavil, can help with chronic pain whether the person is depressed or not.
Just a thought....
(((((kerria, the strong, beautiful, and resilient)))))))
gg
Posted by badhaircut on June 30, 2005, at 9:30:24
In reply to Re: Can body memories be constant? MT, posted by kerria on June 29, 2005, at 16:58:31
Kerria, it sure sounds like you've done a lot. And you still are. You deserve a lot of credit.
The only other thing I can think that maybe you haven't tried is like a meditation/mindfulness approach? Supposedly, it doesn't take away the pain but people feel it less intensely and it interferes less in their lives. No personal experience with it for pain, but that's what I've read.
If there's someplace like that you could try, it might be worth a shot, along with your other treatments. I'm not sure how it would affect DID, though...
-bhc
Posted by kerria on June 30, 2005, at 9:55:12
In reply to Re: Can body memories be constant? MT » kerria, posted by gardenergirl on June 30, 2005, at 6:18:33
Thank you so much, (((Gardenergirl))).
i work in hot conditions- the temperature is hotter than outside, on a sunny day it's about 115 degrees. i was on Duregesic for a few months last year until i became very sick at work from the patch. In high temperatures it releases too quickly. It was good without so many side effects. i hope my disability case goes through soon. it's a waste to work- except i need the money- but it's costing me more to work because of medical bills. i forgot to drink enough water because i was too distracted and was so sick - i was taken to the hospital with heat exposure and they gave CAT scan, tests and ekgs- then had almost fatal idrug interaction with reglan and toradol with all the oxycontin i'm taking. i wish disability would go through because i only make about $125/ week at the part time job but it cost thousands in medical bills to go because of the migraines from the heat. we have insurance through h's work but still have to pay part.
Everything is such a mess. we don't feel very strong at all. The pain is very bad, i took elival- i'm depressed also so that would be good if that worked but it's too sedating to add to the oxicontin and it won't work alone.
i'm not a whimp with pain, i had three children completely natural childbirth and it wasn't pain like this. The hard thing is that it's so constant. i can't be in it- it's impossible, i just would do nothing but cry all day.
i just pray that i can do the nerve block. i see T this afternoon but i don't think there's any chance after yesterday of it being body memories, it does make me think of p.a. and s.a. and that makes it even worse.tears,
kerria
Posted by kerria on July 2, 2005, at 0:42:58
In reply to you've done a lot » kerria, posted by badhaircut on June 30, 2005, at 9:30:24
Hi Badhaircut, hi Everyone,
Meditation and prayer is a good thing to do just to quiet my noisy mind and see the priorities of life. thank you, bhc, That's a good thing.
Pain medication can't be changed though. i hope that the dr doesn't decide to take me off without a succesful nerve block- i hope that i can meditate and somehow have peace to do the nerve block.
T said he would help and that i'm good with hypnosis. Hopefully it will get us through ok.The pain is worse now, ever since i tried to cut down the regular SR oxycontin dose to 40mg instead of 60mg. i'm back to the regular 60mg dose but my body is not forgiving me or the pain is worse.
now i'm worried that this is serious. i feel abandoned by all the drs that i went to - they obviously missed what was wrong with me and i'm getting so worse. It's been eighteen months now that i've been in terrible pain.
Should i go back to the first Dr- the gyn dr that did the surgery? Tell him that i'm still in very bad pain? i keep wondering if there's anything that can be done to treat it instead of just giving up and taking pain meds.
This is when it's so bad to have a DID and pTSD dx. Every dr that knows will have that in their mind.
we're feeling so discouraged and afraid, can't sleep. i need to pray and meditate. It's difficult because the pain is triggering.
T talked with us yesterday, yes- sure it reminds us of bad memories, but pain is different- not the same. Not a f.b.
we're having trouble with switching and finding myself little- at the worst time crying and no one around understands. everything is so hard. Even my home feels strange.
i wish there was RL support. T is support but it's way hard to try to do therapy when i have this triggering health issue that makes me feel so afraid and hate myself already. Too many things are wrong.Thank you for listening,
kerria
Posted by gardenergirl on July 4, 2005, at 0:36:35
In reply to Re: you've done a lot, posted by kerria on July 2, 2005, at 0:42:58
Hi kerria,
Have you ever been back to the surgeon who did the original surgery since you've had the pain? It would seem like a good thing to do, if you haven't already. Even if you have, the surgeon should know you are still having complications.When you get the block, can you be given a sedative? I would imagine that it would be a scary procedure to have.
I wish I could take everyone's chronic pain away. My mom has fibromyalgia, and she hurts a great deal of the time. I'm such a wimp, I don't know how folks deal with it.
Safe and gentle hugs...
gg
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