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The Chronic Pain Couch User Group
Wondering how I can help?
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
783 members
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Wondering how I can help?

Interesting stories I read. I have been through hell myself but have learned to live in the present even with my pain. I read stories about people who are in pain and can't find relief and don't know how I can help. It makes me feel at a loss when I can ever offer a smile barbecue of what I read. My situation is getting better but I have a lot of baggage behind me. I have to leave the baggage and the memories behind me in order to move forward with my life. I am a fighter and don't know why I am here but it must be for a reason and I am not going to question that reason but try and build the strength to move forward with each of pain. It is very difficult, but it was more difficult in the past when I was taking care of friends who had died and I had to help them die in peace. I buried one wife of 13 years from heart disease and the many memories I still see today in my dreams. That was a rough marriage but a beautiful one. It had it's moments to remember. I married again about 5 years later only to find my wife had lung cancer after we were together only two years. I went through all the treatments with her and she eventually went in to remission for a short time. I had my mother in law move in to help take care of her and to be a part of her daughters life while she could. Eventually the cancer came back and spread to the spinal cord and there was not much we could do. It was very difficult to make her mother understand about the cancer (she was old and claimed god would cure her daughter). Dotty was a wonderful person with always a laugh. Even on her worse days she would find a way to make someone laugh. She could always spread a smile. She told her mother she was going to sleep and then she told me she was tired and wanted to get some sleep and she just slipped away peacefully. I have many such stories of friends that I have take care of that are gone now and the loss of all my family around the holidays really sent me over the edge for a few years and it was hard to bounce back. I was heather then. I did not have any health issues while this was going on and it is a wonder. Then I went back to work and within two years of moving up the ladder of a job I enjoyed, I had to go out on disability. I started with peripheral neuropathy of the legs and could no stand for long periods of time and eventually over time, my health issues became worse. Now this was happening to me after me taking care of all the people in my life that I loved. I was diagnosed with degenerative joint/disk disease which was causing severe pain. I had 3 operations after finding the right surgeon but the strength in my legs still was not good. I missed walking along the beach and the normal things I did. I was bedridden for quite some time. Doctor after doctor, shot after shot, procedure after procedure, experiment after experiment, drug after drug until I was so doped up, I didn't know what day of the week it was but this was the doctors recommendations. This is not the way to live. With much determination and a wonderful caregiver by my side, it was back to the doctors again to correct what needed to be done. More shots to help the pain issues and now I had to push myself to walk again even though the pain was rough but I did. I had a caregiver who kept pushing me and I had to believe that I could do this. One more shot, one more procedure, one more surgery...
Years of this taught me not to give up. I know I can walk again and I know there is a way to get this pain down, all I have to do is find the doctor that can do it and I can do the rest. Found a doctor who gave me the shots I wanted (although she wanted to give me more drugs) and I fought with her to give me the shots I needed and eventually she did.
That was in November of 2012, and as of January 2013, I am up walking and using the muscles I have used in years. Yes it hurts but my pain levels are down and I can handle the pain but I am walking again, almost daily even down to the beach where I love the water.
I read about people who are going through all types of pain issues and doctors who don't listen and tell them all to get another doctor. I tel them of my experiences and the state of mind you have to be in to survive.
And still I see people who need help because of poor medical treatment or poor decision making or just ignorance on the doctors part or maybe the patient. I don't want to blame the patients at this point, they are the ones asking for help. How do you make a doctor listen or how do you make a patient take a stand to make the doctor listen. These are decisions the patient has to take hold of and if the doctor is not listening get another doctor or accept you diagnosis and deal with it the best way you can mentally and build strength that one day you can accomplish the things you want to even if it is for a moment in time.,
Keeping a strong healthy mind is the starting process of healing and the rest comes in time. The magical word.
I read some posts were I feel I can't help. I won't give the reason why because I am not a medical professional, just another human being who wants to try and help people but with all the baggage and memories I left behind, I am no better to speak of. I falter on bad days but have to pick myself up again because I don't want to go back to where I was and that keeps me going.
I don't know if that offers any help out there but there is a purpose we all have to accomplish weather we are sick or not and I am not asking any questions about why I am still alive, I just know I am and I am getting better. I can walk again for the first time in years. If anyone else has this strength of mind, use it and make it work for you.
I sign off with wondering how I can help?
22 Comments
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Avatar_m_tn
madman---please know that what you are sharing does offer help to "we the group" and i think it helps us too when we do write about our challenges. I feel the same helplessness as you and the same frustrations. Maybe a boatload of money would help! HA!  Likely ya know?
omhome
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3112530_tn?1342559764
I guess over the years I have learned that I am a survivor for what ever the reason, I am still here and fighting every day. There must be a reason why I am still here and I am not going to question who, what and where. Life has been rough but a good challenge and made me wiser and smarter. Looking forward to better days.
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387767_tn?1345875627
Thanks for your story.  You have been through a lot  and are very strong. But everyone is different.  For me, who was an extremely active person (I also took care of evryone else), this slow deterioration of my body and my ability to be independent over the past 7 years to the point I am now has gotten me in a dark hole.  I have fought for a long time. and I just feel hopeless now and sad.

For me, the chronic pain has taken everything from me--it crushed my spirit and messed up my mind.  It's just gone on too long.  And people react differently to me--I am still me.  I'm kind and compassionate but seems everyone turns away...that's what happens. I know this from my experience with my mother's illness.  No one wants to be around you if you can't *do things* or you need help.  It's the way it is, maybe not al the time, but very often.

I have been on Med Help for years, and I have heard from others the same thing....it's the hardest part and really makes you question....

You did help me with your story.  I will try, at lesst for today, not to cry..how is that?  God bless you.
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3112530_tn?1342559764
I guess reading my journals won't help. I used to work in a hospital that I enjoyed for many years. I worked my way up to administrator of the emergency room where I saw many situations that required attention. I even had one doctor fired. That took a strong backbone because I also saw many a veteran die and had to handle friends who also died and help bring their body down to the morgue. I left this govt job to take care of my wife who was dying of cancer. I was a strong man in those days. I had to be.
My younger years as a dancer is when I met my first wife. We danced almost up to a professional level but that was a lot of competition but I loved dancing. My dancing days were over with when my first wife developed heart disease. Once again my strength was needed. My wife had no family to take care of her. My backbone was needed and I could not think of myself or my dreams of competition any longer.
After grief counseling from the death of my two wives, I had hoped to return to dancing but developed neuropathy in both my legs and later learned that I had a family history of degenerative joint.disk disease. I learned from my family about how this affected them and how this was inherited and learned from my doctor about what could be done. My dancing days were over with and my family was all gone by now and I was on my own to deal with this disease.
As of present, 5 operations later, many procedures, shots, treatments, pills and psychological counseling, I had to accept what my life was to be. Limited as it was, I had to find a way to see through all this daily pain.
I spent many an hour going down to the beach in an electric wheelchair and crying. The ocean and I gave me solace but it was only the waves and I that could understand one another. They were private moments but useful ones. The ocean gave me strength again to fight what I could. I still had a mind and I stopped the drugs to keep clear the strength I had to build.
This took years of therapy with the ocean waters but it worked for me. If that was the only thing I had left, then I had to make it work for me. I was still alive and still had something to offer life. I was not alone in my fight to live. I found others who shared my condition and saw how they intensified their lives. For what ever reason I am here, I know there is a purpose and I am not going to question that.
My health for the moment has improved and I do not know how long this will last. I now can walk down to the beach and one day hope to touch the waters by summer. Something I have not done in years. At least there is a goal to work for and although I may never be a dancer again, I can still dream and maybe the waters of the summer down by the beach will give me the strength to try. I still have that dream to accomplish but will settle for what I have today and the dreams of tomorrow.
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387767_tn?1345875627
Wow, you have accomplished a lot.  I have the utmost respect for you as a veteran.  My father (passed in 1995 was a WWII Vet, got a purple heart for a wound he lived his life with a huge piece of shrapnel (sp?) in his leg.  He left all his stuff--purple heart, dog tags, medals and those little flag things in a case for my son, his first grandson.  I take it out and look at it sometimes--there's black and white photos from the war times with his buddies.  He would tell the stories with tears in his eyes and , you know, now I look back, as a teenage girl I would respectfully listen, but not really.  I wish I had listened more.  He died when my son was only 7 years old so he didn't get the chance to tell the stories to his grandson.  I can only imagine how you feel about your fellow veterans.

Working in the ER, dancing, really amazing.  You are getting better--I'm sure you could make it with your determination and strength.  You have helped me a lot--Madman, maybe you could be a therapist?  You'd be great at it, or write a book, how about that idea?  
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Thank you for the wonderful thoughts. Let me give a little background. I started out as a clerk typist and then I got the promotion to supervisor at the emergency room. The thought of actually working with patients scared the hell out of me. I was VERY insecure at this time in my life. I had a lot of issues that I was dealing with and was comfortable as a clerk typist but when offered the promotion, I almost refused it but the money seemed too good to be true.
I went through three months of reading manuals in an office before I hit the 'front lines' so to speak. My insecurity was still there but I was hoping I could handle it.
Day one on the job was dealing with a psychiatric patient in lock up and I was terrified. I don't know who was more scared, the patient or me but this was my job and I had to do it or lose it. I stiffened up and did what I was supposed to. Scared to death, I returned to my station with a sweat and my employees congratulated me on doing a fine job. That built a little confidence in me and I found my employees a great help in doing my job.
It took years to build up a back bone to deal with people who had more problems than myself. (I will be honest, after the job, I would go to the bar to build up more courage). When I saw friends that got sick and I had to take them to the ER for help, I realized that I was outside my scope of doing my job but it was becoming a natural because they needed the help and no one offered to help them. My back bone was becoming stronger and my drinking less and less.
As a supervisor, I found my staff very helpful and my employees discovered corruption in the VA system and I had to back them up after FBI investigations were done. That was also terrifying but things needed to be brought out. Working in the ER was the best treatment for me. It taught me how to deal with people in need and put my own problems away for the moment of someone else who had a need. Dealing with death became another part of the job because that is part of the viscous cycle of life.
It felt good to learn to help people in need. It taught me to deal with my own insecurities.
Yes, I have tried to write a book of my experiences BUT some of the horrors of what I experienced left me with memory damage as I blocked out some memories to survive the daily grind. When I tried to revive those memories to write, I could not relive what had happened and found a way to bury those memories for life in order to move forward with my life in a positive direction. I had no choice because NOW I was becoming the patient in need. My health had deteriorated over the years, and the nurses at the VA were very compassionate when it came to my treatment. These were the same people I worked with and now I was the patient who was scared to learn the results of tests and treatment. Put yourself in my shoes and understand what it is like to survive, fear, insecurities, treatments, and making out a last will and testament for each treatment. Many doctors told me, that the chance of paralysis was possible.
Writing this is starting to shake me up so I digress to say, that I had to do what I had to do and somehow came out of most of it. I do not claim damage but I do not look back. I had one hell of a real life education and I am thankful for it and need to use it for my future. As my DDD/DJD progresses, I know what to expect and am thankful for each moment that I live with a good moment because I know this will not last but have the moment to be thankful for. That is what I can look forward to before I become bitter for all that has been done to me but I do not want to live in that moment for the rest of my life. At least I have the mental strength to help with my pain and as long as I have that I can fight. That is why I refuse to give in and I hope this story help. I am done and thank you for listening.
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Avatar_m_tn
well read this again folks---what a help it is and what a story that i want to see continued---ya really do got a bk there my man!! Where are you group?
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3112530_tn?1342559764
I'm not trying to toot my own horn but this was life's experience for ME. Each person is different and I have met many people who see their problems differently in areas I could not help with. Sometimes that wracks your brain and does damage when you feel helpless but sometimes when you lean, it is out of your area of expertise, you have to concentrate on what you can do to help.
Learn to know your limits as this had done damage to me when I could not help. I won't go into details but I know what a psychiatric admission is because I was one, more than once. This taught me an new in site on what I could and could not do. Once I realized that I had limitations, I had to focus and get myself centered and from there, I learned what I could do.
Not everyone sees the glass half full but when you have no other choice, the glass IS half full.
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139792_tn?1299416777
Knowing our limitations is the only practical way to remain sane. Many have mega ambitions but potential may be much less. In this situation, failure is the only out come.So in stead of denying, accepting our limitations, we should formulate our goals and try to reach them.We may call this as a middle path.As usual your advice is quite practical.
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3112530_tn?1342559764
When I had SEVERE pain issues, a nurse told me that I may never be out of pain and I had to learn to accept that. That was a tough pill to swallow. Over the years, I have had many treatment for pain issues and some worked for a short time and other treatments did not.
I had the help of my caregiver who has been the 'angel on my shoulders' and kept me focused. It was rough but he did all he could mentally and physically for my treatments. He did research into new treatments that the medical community is NOW recognizing and I got treatment for my pain issues. My pain levels are down but not completely gone but I will it' compared to what it used to be. I am so grateful for the support I got from my caregiver, I have no way of thanking him but I try each day. When I get 'snappy', the first thing he asks me is 'are you in pain' and that usually helps me center myself.
Pain is not something you should go through alone and there should be a STRONG support system out there, so find it, it helps get you through the day. Sometimes just getting through the day is 'all I ask'.
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4190741_tn?1370181432
I had my last back surgery with rods and screws and wrapped wires tying it all together, and I met with the doctor after the surgery and he told me he had some bad news for me, that all I can look forward to is a life in a wheelchair and there is nothing more he can do for me....I looked at him and told him Not to put any money on that bet because he will lose it, and left his office determined not to put any credence into his diagnosis..

You are very fortunate to have a wonderful care giver and thank you very much for sharing your life and advice with us .....I find it fascinating and am very grateful to you...

M
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139792_tn?1299416777
You have challenged your consultant. yes, you are a real worrier.If one cannot do exercise or movement, best method could be, circulating our awareness on 14 meridians. This was available in a book probably entitled as 'Chinese meidtaion" One round is completed in 6 breats. The route is complicated to describe.I do that mediation many a time. I have requested Omhome to know from her daughter.The book is untraceable at my place. If it is not available, I will try to prepare this route and share it here. I had learned this about 30 yrs back. Recently I recalled it bit by bit. I tried many web sites for it without any results.  
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4190741_tn?1370181432
14 Meridians
Meridian List

- Stomach

- Lungs

- Brain

- Gallbladder

- Liver

- Triple Heater (Thyroid and Adrenals)

- Heart

- Back/ Governing

- Spleen/ Pancreas

- Small Intestine

- Circulatory/ Sex



- Kidney

- Large Intestine

- Bladder



How to Test the Meridians

Testing to see if muscle locks.
Person being tested tries to resist pull or push.
Not a strength test. A lock test.

Using to check energy flow.
Wherever there is a lack of energy flow there is a problem.
Colloidal water and mineral solution in the meridians produces the chi (energy) flow.

Muscle Testing is NEVER to be used with asking questions.
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http://baguachiflow.com/14-meridian-flow-qigong-set/

Copy and paste this into your web browser and see if it loads for you...I am finding out much info on meridians

M
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4190741_tn?1370181432
If you go into my public profile, I have loaded a large photo of the Meridians there in my photos..I don't think I can do it in the group
but I have the photo and it is very interesting...Thank you for the info you have informed me into looking for....

M
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Avatar_m_tn
an interesting part of the "muscle " testing according my my chinese-medicine-acupuncture-dancer-yogi daughter (the youngest most beloved one by all of our family) is that  she and her fellow acu's only use it on about a third of the clients they see. A lot of people think it is nonsense or they are expecting something more "complicated". They are also the ones that the very important "placebo effect" does not work on (usually).  You are also supposed to use very esoteric "chinese" techniques.  Expectations ya know. Gotta work 'em.
      At the yoga ashram i lived at  the town and neighbors (some of them) thought we were a cult of some kind (well,we sort of were!). A few of them thought we were for sure sacrificing chickens! Using the blood for our nightly rituals----our satsang and chanting. We had goats and gave them away (ate the garden etc.) once----oh my god---yep now we were doing in the goats.  What people will believe!!!    
    So acu works on those beliefs whatever they are and uses them artfully.  Sometimes with "muscle" testing (while actually testing chi or prana (life energy or force). Like that really exists!!HA!    i love this stuff! Don't you guys?       Omhome
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Avatar_m_tn
i should say that my daughter works with a bit of a skewed (no--not screwed) population:  Santa Cruz  Ca.  I doubt the same principle works near the same way in oh--mississippi or georgia. There are actually some working "witch doctors" in santa cruz ya know. Different---soooo.
   Dalubaba: if ever you travel to usa come to sivananda ashram in Grass Valley Ca near Sacramento  (hello aheart?). One of only a few true classical operating hindu yoga ashrams here. The big sivananda one is montreal i think---other than india.      om
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4190741_tn?1370181432
I have never heard of it at all, at least the 14 meridians for sure, and was very happy to have found all the info I did for some later reading,,,
I wish we could put some live internet links into our posts so that those who have trouble with finding the links could just press on them and get the info for themselves....

M
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4190741_tn?1370181432
I went to the address in your post and found the ashram and info,,,,It is also listed on Trip Adviser as a wonderful place to visit and meditate...Thank you for the info....I have put it into my favs now and will go back and read all the reviews later....

M
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Avatar_m_tn
and you do not have to do any of the physical yoga---everyday----oh wait----you got the yoga farm right there with you with videos and all      yes yes yes
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as to acupuncture you can google five branches university for some info----om
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139792_tn?1299416777
yes sivananda is a well known name. He is/was from yoga school of Bihar. situated in Munger. I took first 10day course through his Shivananda's disciple in sixties.My daughter is In Seal Beach LA. If I come again to USA, I will definately visit the Ashram at grass valley. If my son and his wife had settled elsewhere(other than INdore) I would have sold my property and settled in some Ashram.  I used to discuss this plan with my wife.She died in 2005. At home also I do live a life of Ashram. My routine is almost same as a sanyasi.
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