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How to take control of this pain- and not alienate my family ?
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Congres posted:
Hi, right now I can only sit for about 45 mins, tingling, loss of feeling and pain has stopped me from functioning at work, home and most of my previous life. Not sure what caused the changes, I am 47, have five children still living at home, and I fear I am alienating them by being grumpy from pain all the time. Any suggestions for keeping a family strong and happy going through these painful injections, surgeries, and changes in function. Please pray for me and my children, they are bright and loving, their dad walked away a few years ago, no family within three hour and I can barely drive any longer. I hope their faith can be strengthen through this, mine too. Take care, please write.
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bj1208 responded:
hi and welcome to the support group

yes pain is pain no matter how u look at it -

we need to know a little more about yourself and your back problems - what happen what type of doctors have you been to what types of pain clinics etc.

the more we know the more we can help you -

you can click on my name or pic and read my story - take care - Joy
 
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Congres replied to bj1208's response:
Hi, thanks for replying. I only can say that about three years ago I started having severe pain at work while sitting. No particular injury. Though I have had injuries in the past to my back, lifting couches, carrying children, nursing work, all these episodes were controlled by OTC meds and decreasing work load. Then as I stated three years ago things got out of my control. I was diagnosed with DDD, Fibromyalgia,spinal arthritis, scoliosis, bulging disc L4-L5 (which now has herniated). I see a psychiatrist, take wellbutrin,have tried every type of drug in the NSAID family (all which raise my bp very high) so I dont take them any longer. Orthopedic dr seen 18 months ago. He did nerve conduction test with some positive results. He stated surgery should be the last option and try the pain center first. So after the Ortho dr tried a series of injections (no help) he sent me to the pain center.After a year of injections, denervations (some helped) no the disc has herniated. The pain center stated two more injections then on to a neurosurgeon as they cannot help any longer. I worked for the state and I have a good disability policy that ends in 2014, so I am concerned and scared about taking care of my five children still at home. I am at home but I feel as if I am just floating through the day, not really engaged. Angry so much of the time, not at them but at feeling like so many professionals think oohhh...is this pain real or not...please...its just pain is an area I guess where abuses happen but I hate feeling like I am fighting this attitude on top of struggling with pain. I get scared when I read about surgery making some people worse. The ortho dr had said with the DDD my discs would degenerate and surgery would help possibly. I am trying to keep up a good attitude and keep my schooling on line going. I try to get to church but those pews are hard and an hour seems like a lifetime. I have trouble sitting for more that 45 mins, walking is minimal. Aqua therapy has been a gift I can give myself and I do go three times a week. I just feel like how can God expect me to raise these kids well when I can barely care for myself. The kids are great and help out so I do have much to be thankful for. I will be connecting with occupation therapy this week to see about a computer setup to use from my bed, there must be something. Any encouragement is helpful. Thanks for listening. Take care.
 
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bj1208 replied to Congres's response:
hi Congres and sorry it's taken a little while to respond -

what type of pain clinic are you going to? reason I ask is that most 'regular' pain clinics see $$ with the injections and sometimes will say that's all they can do -

seeing a good PHYSIATRIST Pain Management clinic is good as they do go to the underlying pains and treat from there instead of treating the pain.

http://www.spineuniverse.com/treatments/what-physiatrist

You can click on my name or pic and read my story - before and after my back surgery I had been to numerous pain clinics - always starting with shots and after the last treatment was always told they couldn't do anything more. the last pain clinic I went to the doc was straight forward and told me I should be seeing a PHYSIATRIST Pain Clinic - and they have really helped me over the last 3 yrs. they refuse to give me steroid injections (they actually told me I have been having mild allergic reactions to them!!) so I really have a lot of trust in them.

hope this helps - let us know how you are doing - take care - Joy
 
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trs1960 replied to bj1208's response:
I'd suggest seeing a PHD (psycologist) specializing in pain management.

As mammals we are wire for fight or flight response. When in pain the brain tells us to do something about it, fight back or runaway. Since these actions do nothing to releive chronic pain the brain gets anxious. This increases stress levels, blood pressure etc. The more you can learn about how the brain deals with pain and how pain is signaled from your periphial nerves to your brain (this could be nuerological, chemical -substance P) the more you can understand that you're human and the pain is something caused by an injury, disease or abnormality in your body. Your body is telling your brain to do something it cannot. If you can work with this it can help you dissaccociate the mind and body.
Pain by definition is an attack on you body. Your brain handles that in ways I described. Anytime our brain senses we're under attack we get anxious, testy, grumpy, fatigued...it can even alter our brain frequency.

I think a good PHS along with a pain managment MD is a good direction to go. Teach yourself as much as you can about your body as "Mystery pain" is a dangerous enemy!

Good luck, I hope this can help you to keep the pain issue from negatively impacting your behavior as a person, mpther and friend.

Arestotle had many great quotes about pain and it's stripping of the dignity of those who suffer. The concept of chronic pain managment has been on the mind of the graetest philosphers since time began.

Tim
 
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Congres replied to bj1208's response:
HI, Thanks for writing, I have to apologize for the long wait in response. Studying for my Family Nurse Practitioner degree, kids school has started, you know . I do have an appointment with a physiatrist on Sept.21. The injection, ablation center said they have done all they can for me. So on to a physiatrist and possibly surgery. I have been out of work for over a year and a half, its starting to get to me. I feel helpless in having fun with my kids, but I have learned I need to change, as its possible that my pain is not going to change. I sometimes feel so hopeless, but it must be possible to live with pain and still be happy right ? Happy September. Christine
 
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Congres replied to trs1960's response:
Dear Tim,

Thanks for writing. I really appreciated your last paragraph. I love academics. I am working on line for my Family Nurse Practitioner degree, its one hope I feel I have each day. I am seeing a physiatrist on Sept.21, I will opt to have the surgery this time. I am such a sissy with pain. How can one keep their dignity and control. Do you know anything about pain bio-feed back skills ? I have learned to just keep going, thanks for the good points in your post. Academics helps me dissociate from my pain for a time, its exhausting though to be on 'the run' so much from my own body. Oh well. Thanks again, Christine
 
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trs1960 replied to Congres's response:
I went through a course of Bio Feedback. There's a few different techniques and this was basically an audio vidio sensory reward program that trained your brain to lower its operating frequency.
To be honest it didn't do much, but the learning I gleaned while undergoing the therapy was invaluable. The doc and I ended up trading books and our discussions helped me finally understand how complex an issue pain is.

He also told me that an A type personality typically trys to suck it up and just push against the pain. That works if you hit your thumb with a hammer and are waiting for the pain to pass. With chronic pain it won't work as the pain is always there 24/7. Eventually you give up pushing and the pain will crash on you like a wave. He taught me how Zen pain is and you must accept your pain to tolerate it and live with it.

Some of the best pain treatment I've had was with a PHD instead of an MD.
 
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Congres replied to trs1960's response:
Thanks for writing. I would be interested in a bio feedback class. Or maybe the lessons I learn about myself. Can you explain where to locate a class such as this? I will also try the internet but don't want to waste my money and time on something that I cant use. Please any info you have may help. Thanks, Christine
 
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Congres replied to bj1208's response:
Hi, I am seeing a physiatrist orthopedic surgeon. She suggested a double fusion. I am really not clear how to be a single mom to five and a recovering patient ? I think I will have to be forced to have surgery either by pain, further deterioration, or long term disability stating it needs to done. Will see, any ideas ? Thank you, Christine
 
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bj1208 replied to Congres's response:
hi congres - it's hard to say - and you're really the only one that knows the answer.

as for if you do have the surgery and recovery with kids - see about maybe church and see if someone can come and stay with you during recovery. if you don't belong to a church maybe go and discuss with the pastor/priest and see what can be done.

there should always be programs available and you may need to call and see where they are etc., I know there are always senior citizen programs available so maybe see if there is someone there that can come.

check yellow pages, internet and senior citizen programs and see what you can find and also churches.

I hope you can find the right answer to your question -

take care - Joy
 
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trs1960 replied to Congres's response:
Look for Pain Managment PHD. THye use it a lot for ADD so you may ask around some of their institutes?
 
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trs1960 responded:
I think I lost this battle. My wife wants to leave me. The good news is I think she wants to leave the kids with me.
I love all three, but my wife is tire of me not getting the big promotians and coming home tired and in pain...all this time I thought I was giving up my life to keep a roof over her hear and medical insurance for the entire family. If I go on disability I get medicaid or medicare I always mixh them up. I could get insurance for the kids, but since my wife has diabeities she'd neve get on a new policy. I called a few years ago when I found out thea I would get ver $3000 a month extra pay just for my dependents. I thought I could surely by the three of them a policy while I'm on mediwhatever. They told me hey wont insure her.

So everything I've done has pretty much backfired...except if I can get my girls. 15 and 17 both honor roll students both great kids.

Thing is I've been barely taking pain meds lately, trying do hard not to. I even went months with nohing. I started going to physical therap 3x a week to rehab. My wife got mad because the therapist is a pretty blonde! One that is also married, has a PHD in ortho rehab and is a little stand offish if you ask me, but I guess she is good looking. I wouldnt say gorgeuous.

I feel so dead inside. She made me who I was...I don't know what to say
 
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bj1208 replied to trs1960's response:
Hi Tim -

I'm so sorry that you're having marital problems. That's a big possibility with any of us that suffer from chronic pains and I know that we've all had our fair share of marital arguments.

My prayers are with you and hope everything works out favorable for you.

please keep us posted on how you are doing. take care - Joy
 
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davedsel57 replied to trs1960's response:
I'm sorry to read this, Tim. I will be praying for the best outcome for you and your family.
Click on my user name or avatar picture to read my story.

Blessings,

-Dave


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