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An_223005 posted:
I'm becoming a member of this group because I feel very alone and confused by the effect of pain in my life. I try to stay positive, try to stay productive but feel myself losing "a little bit" every day - a little bit of joy, a little bit of hope, a little bit of beauty (not an abundance to begin with but I used to look so much better!), a little bit of confidence. My husband is a wonderful partner, my daughter deals with chronic pain,too but it seems that I'm disconnected from others who have just gotten tired of changing plans or hearing my answer to "How are you doing today?" If I tell them the truth, they push it away (well-meaning , sometimes) and if I say "Just fine", it comes out later that I was lying. I read the post from BJ1208 -my history is similar right up to the 4 month post-op crash. That's where I've been since 2004. I've had the injections and blocks:finally had a dorsal cord stimulator implanted almost exactly 1 year ago. It initially worked well, then the lead shifted and I needed a revision in January. I've never attained the pain management that I experienced right after the implant even though I've had numerous adjustments. My PM doc doesn't seem to understand (or just doesn't want to hear) that the stimulator isn't working. My meds have been reduced in accordance with the expected improvement but, since my pain isn't relieved by the stimulator, all I have is more pain, less relief and a growing reputation as a problem patient. ARRRGGHH. Now Florida is finally cracking down on bogus pain clinics -hooray -making it difficult to obtain some prescription drugs and anyone using them look suspicious. A recent traffic stop for failure to signal (the blinker bulb was burned out) turned into a 45 minute interrogation when the officer saw that my prescription bottle had fallen out of my purse. I understand how chronic pain patients get angry, depressed, isolated and feeling helpless. I'm there now myself and never wanted to be this person. Having been treated for depression in the past, I know that I don't have the energy to keep up the happy face and deal with the pain so I need a psych provider who understands pain and will help me resolve some of the communication issues with my PM doc. Does anyone have suggestions on how to find such a professional? My PM doc referred me to the Dr. who did my psych eval for the stimulator, a distracted, detached man with a cold office staff who charges $120 an hour! I sound whiny but I just don't have a lot of internal or financial resources left to go on a "doc hunt". I just feel so overwhelmed right now and I never saw myself getting this way. Any suggestions and/or enlightenment will be appreciated.
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charl1942 responded:
Dear Anon_61126, I noticed no one had answered you. I am so sorry I can not help you very much. I am in a lot of pain, but mine seems to be the tailbone and SI joint dysfunction. I have trouble sitting. To the point I rarely do. This has caused a lot of issues keeping me at home, eating out, visiting, going almost anywhere.
I live in Fl also. I am now treating with a neurologist and have had no trouble getting the pain meds I need. The only thing is, I am tired of medication and hope to find the cause and see if I can be helped so that so many meds are needed. There should be someone soon to come along and give you some good advise. I just wanted to let you know someone out here has read your posting and understands your concerns. Please continue to be patient until you have some good advise.
 
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bren_bren responded:
Hey THERE ANON!!
Welcome to the pain management support group!
(cont'd)...
 
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bren_bren replied to bren_bren's response:
...sorry for the confusion, but my posts have been disappearing lately, and I want to be certain this reply will be visible to you.

First, I want to offer my support and appreciation to you for writing on this exchange. I started it many months ago in order to get moral support from other chronic pain patients, as well as lend support to those who need it as well. You are welcome to post, vent and ask as much as you want; but I'll be honest and let you know that replies may take a few days, since I get on about 1 time a week.

I'm so glad you wrote because you bring up many issues that are tough for many pain patients to deal with. I'm not certain as to which story that "BJ" wrote that you describe as being similar to yours, so could you tell me how long you have been dealing with chronic pain altogether? I've only dealt with it the past 4 yrs, so I'm not sure if I can offer much advice to you that will be useful, but I'm willing to try.

I share many of the exact same feelings as you do in relation to my pain and where I stand upon social interaction. People are just being polite when they ask how you are (in most cases). If you tell them how you "really are" then, if they're not very close to you, they may write you off. I've found that even my closest family members just don't know what to say about it anymore. Sometimes my pain levels are so high and I try to obscure it but it becomes impossible. Other times, as I try and discourage any conversations pertaining to my problems with isolation and pain, I feel worse because I am not forthcoming. It's a catch-22, isn't it?

As for your description of being a chronic pain patient: who gets "angry, depressed, isolated and feeling helpless. I'm there now myself and never wanted to be this person." I really feel you on this one. But please try and stand back and tell yourself that you have those characteristics but it does NOT define you! I have very similar feelings daily, but I try to stop myself and say that it is where I am in my life right now, not who I am, or even where I may be tomorrow. I really feel the pain you are describing...but you have to realize that you are healthy in this way. You are recognizing a need, and taking good care of yourself.


I was offered an SCS once and saw a particular pain psychiatrist as well. The ones who evaluate and determine your candidacy, as far as I'm concerned, seem to be rather stoic. Myself and a friend of mine have gone through eval's and our experiences revealed a strong loathing for any physician with such "priorities" ($$$).

A decent psychologist, with experience in Cognitive Behavioral Therapy, is what I am seeking now, and may also be a good choice for you as well. I hope to find one who specializes in treating patients with chronic pain too, but I've yet to find any in my area. I have gone into 3 different offices for about 3-5 visits each, and I was able to determine that those professionals were not a good match for me. No hard feelings, but I just moved on.

Maybe you could try making several appt's to meet and "interview" a therapist? I don't know if "consultations" are possible in this field (which would mean a much lower cost to you). I am lucky to have decent insurance so I can afford to "shop around". You could also go on advice from your general practitioner or OBGYN if you see either of those?? Or, you could contact a physical therapy clinic and just outright ask the receptionist where they would recommend their pain patients seek guidance.

I truly wish you the best and hope you can return to our discussion soon. It would be lovely to have you here regularly to contribute! Take the best care of yourself as you can, and don't forget that it IS ALL ABOUT YOU, Bren
 
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annette030 replied to bren_bren's response:
My pcp referred me to a wonderful therapist.

I asked and he gave me her name and number.

Take care, Annette
 
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bj1208 responded:
hi Anon - it's hard for me to get on all the pain boards and I just now saw your post here -

one thing i would like to suggest - if you are in a big city or near try looking for a pain management that has the name: PHYSIATRISTS in it - it's a type of practice - they dig deeper into pain management than most - and they are more strict about issuing strong opioids - they do make u sign a contract and subject to urine tests but they do a lot more to help those that have chronic pains -

and remember one thing: WE EMPLOY THE DOCTORS - so if you are not satisfied then get another opinion - either from a pain management, or surgeons being orthopedic spine specialist or neurosurgeon spine specialists -

especially if the stimulator is not working - I had one implanted (trial basis) and had it removed the next day - it helped the nerve pain in my legs but made my back pains worse - so didn't have the permanent implant done -

I hope you can find the right doctor to help you - take care and let us know how u are doing - Joy~~


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