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The Chronic Pain Couch User Group
Joining You All On The Couch
About This Group:

This is a great site for anyone suffering from Chronic Pain or has a Family member or Friend who suffers. A place where you can tell your story, find others with similar conditions or pain, help someone in need, read up on the latest Chronic Pain treatments or simply sit for a while. Chronic Pain as we all know can be debilitating and relentless. It is not prejudice in any way, shape, or form. It can strike without warning and stay for life. The Chronic Pain Couch is a place designed for your comfort, and please note.. You don't have to suffer from chronic Pain to be a part of this community, we offer a variety of other topics as well. I truly hope that you will come and join us. And remember, there is never a need to worry whether or not your post has been read, a member or myself (Molly) are generally available to read and respond to all posts that come our way...... We are always here for you. Together We CAN Make A Difference in each others lives and how we manage day to day in coping with our relentless pain. Warmest regards, Mollyrae, founder of The Chronic Pain Couch.

Founded by Mollyrae on September 22, 2009
770 members
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Joining You All On The Couch

Hi, I have been posting in a couple of groups, PTSD and Depression, and did the Sleep Tracker
a few minutes ago and there was the Group listed at the bottom of the page.  I had to come here
and was expecting that there would be a wait list trying to join but I see that this is not the case.

I don't know why there is little activity here, but I like the replies I have read to some of the
posters and have been looking for a group like this for a long time....

I have had 4 back surgeries and the last one involved Rods and screws and I was told there
can be no more surgeries for me at all in the back region.  I have had to change my thinking,
my life, my outlook and my mind to have a fairly decent life even in the face of Total Disability.

Looking forward to coming back and reading more from the Couch...

Thank you all very much

M
Tags: surgery
16 Comments
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3112530_tn?1342559764
First I like your 'handle' that you use. That says a lot to me.
Now in answer to your post, I don't really have much to offer on your condition as I cannot relate to some of your issues because I REFUSE to let depression get the best of me. Yes I have experienced depression and got counseling when things got bad. (that was a personal observation for myself after burying two wives which I needed and it did help).
The rest of my medical problems can be tiring when I constantly have to go to a new doctor and explain my history of being disabled since 2001, but with the help of my caregiver who constantly keeps abreast of the medical community and doctors who treat, he keeps my spirits up and focused. As for myself, this is the first time in years that I am actually celebrating the holidays after years of memories of loved ones that have passed on and I could not let go of the memories. Since all my family have passed on and I had no reason to celebrate, my caregiver reminded me that it was him and I and why was I taking the joy of celebrating out of his fun. That is when I had to rethink my grief and let go of being selflessness and do something for him. He has been at my side throughout every thing I have gone through and continually supports my mental health. I have lost a lot of people that I still cry for to this day but have learned to let the tears flow, say goodbye to a memory and put a smile on my face for the current life I lead and thankful that I have those memories to remember but need to look forward to the future as my condition improves with each new medical procedure I have seen.
Keep your handle going as it created interest on my part to answer your post. Good luck in all that you do...
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Avatar_m_tn
i like it too there young----are you still there and if you like this place post and let us know---any questions?  Omhome
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4190741_tn?1370181432
I love the positive voices I am hearing at the Pain Couch.  It has taken a couple of years to turn my attitude around and now I strengthen that
every day with meditation and various readings.  It is still true at least in my case that an attitude of gratitude can change the fabric and landscape of my life.  

Thank you all for your replies.  I appreciate it very much

M
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3112530_tn?1342559764
I am currently going through an anger stage because my doctor who prescribed the spinal cord stimulator has now done a 180 turn around and feels that I am NOT a candidate for this procedure after I questioned her credentials and procedure methods.I passed the physiological evaluation and was told by the psychologist that she did not understand why the pain management doctor did a 180 turn around when my tests show good results. Then pain management doctor pulls out a prescription pad and refills my morphine???
Well putting that anger issue off to the side, I will not be returning to that doctor for treatment. I don't trust her judgment and have other doctors I can check in with who do current up to date medical procedures.
This is the first time in a long time I am creating a holiday atmosphere for myself and the people who care about me and I don't want to take anything away from them. I have lived in the past too long and learned to let it go. I can move forward without being doped up in memories and I see the smiles on the face of my caregiver who has made this Christmas special for him and I because we are the only ones left. He still might hit me with a surprise to get me out somewhere as I am walking again so that might be a plan. Just to be a part of something of the NOW and create something of the future to remember is the joy I am experiencing today and thankful for it.
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3112530_tn?1342559764
One more thing I would like to add. I started on my light stretching exercises yesterday and I will admit I am in pain today. I am supposed to start physical therapy as soon as possible and it has been about a week since the procedure, but I started yesterday and although it hurts, I can feel the muscle responding to what I am currently doing and again I mention light stretching. This is my first workout so I will need time to recover before I do my second but it is the focus I have wanted to do all along. The muscles I am stretching do not like what I am doing to them but remember I have not used these muscles for years and now that I have had all the medical treatments for this year, it is time to move on to waking up these muscles and building strength in what was once dying.
Many, many years ago, I was a dancer and I remember the training I had to go through for that and before that I was a gymnastic major and I remember doing Yoga to keep my body in shape. Well it may be a while before I get into the yoga stage but the determination of the dancing exercises is a focus that maybe one day I can return to that field again if even for a dream so why not and my body is not going to STOP ME!
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1683709_tn?1370713201
Hi, I am glad you found the chronic pain couch. Welcome MYoungAtHeart :)  it is nice to hear from new folks.

I understand completely that this isn't where you really want to be!   I've found many people here who understand what it is like to live in pain, suffer from and fight depression, and come to terms with living with a disability. Also it is a great place to talk about drugs, without feeling like an addict!

This is a place where I can express myself honestly, and not be judged :) When the drugs and the dr's get me so frustrated, and my family is sick of me complaining about my back pain, I can come here and vent.

For me I've lived with chronic pain for just over 20 years!  It certainly hasn't been easy, and I'm actually proud of myself for surviving. It's so true that you have to look at living your life in a different way.

I have had 2 back surgeries.  A fusion with the rods and srews, using bone harvested from my hip.  And then a few years ago, the decision was to remove the hardware and cut out a lot of scar tissue.  That was a big mistake, I don't feel like there is anything holding my back up??

I have a form of spinabifida and spondylolisthesis grade C, in L4, L5, S1.  Of course the surgeon can't tell me why my back surgery has not relieved the pain, according to him his work is perfect?  So of course the pain must be my problem!!

I've been lucky to find a good pain clinic, where prescribing drugs for chronic pain is not a problem.  I do need a cane and usually a wheelchair if I want to get out of the house for the day.   The wheelchair thing, has been the hardest thing to get my head around!! I feel so dependent in the wheel chair. It is so frustrating when stores are not accessible, and people speak to me like a child, that drives me insane.  But it is great for travelling, no waiting in long line ups at the airport.  And you get to pick your seat, yeah.

I am trying to find all the positives in this situation that I possibly can. And I'm also surprisingly popular now because I'm prescribed medical marijuana, who knew??
I was joking with my husband about the fun Christmas gifts I could give out this year.  He tells me that I'm very silly, but that's ok, I still like to have fun.

Ok, my goal today is to make some shortbread cookies, and it's already 3pm!  I am definitely ditching the diet until the New Year.
Luckily my pain hasn't effected my ability to enjoy good food.

Take care, Sue
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Avatar_m_tn
WOW! It is wonderful ---or wowfull a new word!   Anyway i am so glad to hear from you and what an insightful post Sue. When you look (sometimes it takes a closer look and a little patience) but when you look for it---There it is! HA! Eureka--i found it!   That good 'ol positive.
     Ya still "like to have fun"  and "enjoy good food" and joke and fly and on and on with the positives Sue. Wowza! Wowfull! Whoa!
     Everybody---0----with Sue now chant----"ditch the diet" "ditch the diet" !
     Love ya Sue---just keep it up.       omhome
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139792_tn?1299416777
Mentioning of wheel chair in your post reminded me about a website, Chair Tai chi. It has given soft exercises and specific acupressure points. You may pick up few exercises. You can do it in your chair. just try
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535822_tn?1389452880
hhhaa I have joined My young ..lets have some fun that will help us bare pain ..
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139792_tn?1299416777
I am sure your presence in this group will serve as a catalytic agent. You are welcome. I   also read article on acupressure in your journal. Pain and acupressure, shiatsu, acupuncture, go hand in hand.'Prancing' new year for this group.
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Avatar_m_tn
did we lose you there Heart? Post in ok? How's that attitude? Love to hear from you.  om
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Avatar_f_tn
For what it's worth MadMan, I had 8 back surgeries with a great deal of nerve damage to my left leg and drop foot in my left foot before finally getting a stimulator approved by insurance and doctors. After getting it, it needed to be revised because it moved. Then, after shifting yet again, it was determined that I needed a completely different device, so I had yet another procedure. Now I have been cut open 11 times. Although this stimulator is working better after being implanted in September, I have not been successful titrating down on any of my medication. So, the spinal cord stimulator is not always a miracle. --and I am in an anger stage because I have been waiting and waiting for "the next" procedure that would finally help me, to always have them fail. It's hard mourning for the person that we were.

That said, my family has gotten proactive. I have a husband and 3 children who barely remember me as an active woman. So, we decided to join an amazing gym near our home where we can go as a family. I can use the hot tub or the sauna, I can walk on a tread mill, and I think I will begin taking a yoga class. I am fused at L4- L5 and L5-S1 with 6 screws and 2 rods in place, plus cord stimulator/battery in place. Any ideas or suggestions for what to tell a yoga instructor?

I am happy to have found this forum!
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Avatar_m_tn
hello and welcome to our little cult and very nice to have some new energy.
I'll share more later if you have questions about yoga but for now let them know you would like them to make sure you stay safe. Keep awareness to your body and stretch not strain---no straining and no pain is the path--your breath will tell you when you are pushing your limit---keep it smooth and flowing---read the other om posts on breath and mainly-----make it fun and enjoyable--not another chore you do but something you look forward to doing every day!  OK?     shanti    omhome
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1683709_tn?1370713201
Hey welcome brotayjax to the couch :)
It's great to here your experience with the spinal cord stimulator.
I'm sorry it hasn't worked so well for you. Has it helped your pain at all, or are you still recovering from the surgeries?

I find this very interesting, I had thought about getting a stimulator but my pain clinic Dr. talked me out of it. And I had such a hard time recovering after I had my rods and screws taken out, I really am wary of another surgery.  I also am fused at L4 L5 and S1. I have spondylolisthesis and spina-bifida
occulta?  I never know if I get the spelling right!
Anyway my last surgery , removing the hardware was supposed to help my pain, but it actually made things worse. And my muscles became so weak, I could hardly move my lower back. I think it is from being cut open again, the muscle atrophies.
I've worked to gain some strength back by doing gentle yoga. I really enjoy it.
My biggest problem is getting to class, especially in the winter (I've already fallen on the ice once this year)so now I've started practicing at home  :)

It's great you are getting the whole family involved, it's a major achievement when you can get your spouse and kids helping you to live in less pain.  Just having their support is a blessing.

Take care, and thanks for sharing your experience, Sue
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Avatar_m_tn
alright young one! Time to "post in" and let us know you still love our group. we still love you dear pain-friend.  om
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3112530_tn?1342559764
I am doing much better now. In Nov. I had a Botox injection to the piriformis muscle and have started walking again for the first time in years. Leg muscles that I haven't used in years are alive and the pain level is down. Off the pain meds and doing great. Feels good. Finally going to enjoy the moment while I still have it!
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