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Discussion Starter #1
Hi all,

I went to see a psychologist last week. He would like me to go for some therapy and if I do this I wont be allowed any codein based pain killers. We talked about this for some time and he made comments such as. 'lots of people use pain killers to deal with emotional pain' and 'your immune system is effected by your emotions.' I agreed but I do still have Lupus so I do have an immune system that acts like a xenophobic dictator particulaly hating my heart and lungs and seems to be broadening its agressive action to my liver and possibly my kidneys (yay!) and as such I have regular bouts of plueresy and costcondritus.

I want to be open minded and give this a try but how do I make sure he understands how Lupus effects my body. I had thought about getting him in touch with my Rheumy but I dont really want my Rheumy knowing about my past.

Has anyone been in a similar situation? What did you do?

Thanks
K
 

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Kit Kat:

I dont know your history and so i cannot comment on the Drs concerns, however....Unless you are seeing that Dr for addiction issues...I would say that pain management needs to take priority for us who suffer with this wonderful disease.

My psychologist doesnt care about what meds I need to take to keep my disease managable, he lets my specialists decide that, he does help me (when I ask) to cope with the side effects or other impacts from using these meds, but all he cares about it what I need to talk about.

Perhaps you need to get a different psychologist, or explain the need for the medications according to your medical doctors. Remember psychologists do not prescribe medicines, on psychiatrists do that.

Sorry I could not offer more...think of yourself and the impacts stopping the pain meds will have...then think about why you are seeing the psychologist...if they dont mesh...then maybe its not the best fit for you.

Stephanie
 

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Hi Kit Kat

I am not in your position although my gp has recommended counselling to help me accept my illness and limitations.

After reading your post, I have to confess that I felt slightly disturbed by your physcologhists comments. I am unfamiliar with your situation so dont know why you are seeing him. But you are obviously very ill and in a lot of pain. I think that you really need to see someone you can trust if you are going to be talking about very personal issues. He does not sound as though he understands lupus and the effect on your body. Just because someone has issues it does not mean that they are not ill or in pain or that that is the cause of their illness.

I really feel that during therapy you would be vulnerable and that you need a therapist you can trust. What is your gut feeling about this man?

I can understand your reservations about informing your rheumy. Not sure what to say about that one. I really would think twice about your physchologist.

Sorry if I have gone on!!!

Wishing you all the best

Deb
 

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The Other Illinois Tammy
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Hi K,
I agree with sam unless he is treating you for an addictions he should be concerned with what he is seeing you for. You could speak with the rhuemy yourself and let him know that this is what the other doctor would like to try and see what the rhuemies reaction is. There are other pain killers that you can take while trying the therapy. I too do not know what all your issues are and am not sure about giving any other advise other then talk with all your other doctors and see what they think.
I would like to say that if there is an addiction issue then the rhuemy had a right to know if that is the reason for not wanting the 2 doctors to speak. Every doctor you see should be able to work with your other doctor for the best care they can give you.
Tammy
 

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I would check out another psychologist and see if you get on with that person better. Do you have a bad vibe about this guy or anything based on what he said/did? It seems like you did... given that you've posted about it.

While there is a bit of truth in what he said... and undoubtedly it is true for some people... but it may or may not be true for *you*. Do you believe there is some truth in it for you or not? Only you can really answer that question.

If you have been on codeine based pain killers for a long time - then going off them is no simple task. It would actually probably need to be coordinated with a medical doctor. There are other pain options out there that may help you should you decide it is in your best interest to get off the codeine ones.

Good luck with everything - let us know what you decide & how things go.
 

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Ditto what Maia said.
On the requirement of my employer, I did go thru a pain management program. This was prior to my dx, and we did not know then that I have chronic peritonitis. Personally, I have NO faith in the pain program approach. That said, I totally think your PhD is out of line. If you are treating for a medication over use, then that is one thing, but NO way would I put up with that. This diseases hits us coming and going and that person is totally out of line. He is not an MD, and until he becomes one, he needs to let them MD's be the ones who decide if you need pain relief or not.
Chronic pain is our constant companion.

**What I did, was asked my pulm doc if he would be the ONLY one on the team who writes narcotic pain meds. He agreed, and that is now the recommended protocol for patients who battle things like we do, and have multi doctors. I did this somewhere around 15-16 years ago and it works well for us. New doctors feel a relief that this is already dealt with and they are not going to be asked to justify narcotic needs. It also helps avoid drug reviews for narcotic use as all the scripts are on one name. I am allergic to all codeine/morphine/natural/synthetic forms of them. I can only use demerol safely, or advil/tylenol if I have minor pain problems.

I would be looking for a new referral on Monday and ask for someone who has experience working with people who have autoimmune diseases. Perhaps check with your local lupus foundation for the names of someone they have worked with OR post on the physican referral site (further down on the main page) and see if anyone in your area has worked with a specific provider and how they worked out.
Good luck,
Sally
 

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Discussion Starter #7
Thanks for your thoughts.

No I am not seeing him for anything to do with addiction. I am just not coping very well with a difficult childhood and managing a difficult disease. I have spent years on anti-depressants and I have at long last been able to draw together the courage to face some stuff rather than just trying not to cry!

All advice is welcome as I feel really lost in this and I am usually so sure about my decisions it feels quite unnerving!

Thanks again
K
 

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Dear Kit Kat,
I am not at all happy with the idea of you coming off your pain meds. I can see that it could well lead to further pain, stress and isolation for you. If you are feeling brave enough to tackle your problems being knocked down in that way is the very last thing you need. I take painkillers, originally prescribed by a very good Pain Consultant who taught me how to tailor the dose for myself. By keeping the pain under control I never need to resort to the maximum dose. (Other than that I have had poor experiences with Pain programmes at other places).

I also had a lot of issues from my childhood,some fairly horrendous. I did face some of them when my children were small because I met and became friendly with a very good Clinical Psychologist. Even with a Psychologist you trust it can be hard and draining work, very intense. I just really feel that if you want to go ahead you need a Therapist you can trust, and also a good support network because Counselling may make you feel worse in the short to mid term. Of course, this is just my opinion and we will all support you here whatever you decide.
x Lola
 

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The Other Illinois Tammy
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K,
He can not share things about your sessions with your other doctors without your ok. I too am not all that happy about the pain meds being taken away. I would talk with the was it a rhuemy, and tell him that they want to take you off the pain pills as advised earlier. This way the rhuemy is advising the therapist and not the other way around. If he feels it would be a bad idea then they will have to find another way to help you.

I too had some issues with my child hood and when it finally did come out no one believed me so all it did was give me peace of mind that it was not locked inside any more. So it did come out but was never able to face the person(s) it involved so he helped me to let go of it instead, which was better for all.

You are stronge and you will get past all of this, it is important to take of yourself because you can't take care of your family if you don't take care of yourself. Keep us updated please. Please feel free to talk to any of us one on one we are here for you.
Tammy
 

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Just a quick note... I have scripts for narcotics as well as use over the counter pain releavers for migraines and headaches, plus the normal aches an pains that go with lupus. I use the over the counter way to much for both my liking as well as the doctors. I wonder ( and not dealing successfully with it) if the doc is worried about rebound pain when you don't use it. It isn't an addiction so much as the pain receptors becoming more sensitive to pain when not using them.
 
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