My Story: Still Not Believed

My Story: Still Not Believed

I have had chronic pain since I was a young woman. From the beginning, I was told it was “all in my head.”

I am now 53, living on social security disability, and I still don’t have a comprehensive diagnosis.

It would take several paragraphs to write about all of the really stupid diagnosis I have had, many gender specific, like “hysterical.” I did not know they even used that word any more. Yet a doctor had the audacity to tell me that my ruptured disc and nerve damage to my leg, which was nearly paralyzed, was caused by “hysteria.”

Can you imagine the kind of self-control it took me, to sit there in pain and listen to this ignorant garbage? A man would have just punched him!

Kathy Cooper

Kathy Cooper

I have coccydynia, on top of 2 spinal surgeries. The broken tailbone happened in childhood, yet it was only diagnosed this year. It is very painful. I was also told that was in my head, but now I have the x-ray to prove it isn’t.

I had to drop out of college and could no longer work, all the while being told I had psychological problems, even after numerous tests, MRIs etc. They all show a correlating picture of my pain issue, but I am still not believed.

I walk normally till I get tired. I have nerve damage, caused by a ruptured disk, and collapsing vertebrae. This was initially diagnosed as stress.

Even now I am not receiving any comprehensive care. I have nerve ablation and steroid injections in my spine every 4 months, but it is not enough to keep up with the number of issues I have. I have scar tissue from a botched surgery, which I was also told was a psychological problem. Medicare won’t pay for surgery to remove the scar tissue, so I have to live with the pain.

I cannot roll over in bed or do basic housework without pain. I cannot enjoy a movie or a meal in a restaurant, because of my broken tailbone.  I can’t do basic things and feel helpless and useless. I have lost everything. I did well in college and loved it, yet I could not finish my degree, due to incompetent doctors and misdiagnosis.

I don’t look sick. I do yoga and stretches to keep the pain and muscle spasms at bay. I don’t look like there is anything wrong with me. I worked hard to get my gait back, to walk normally, but it takes extra work.

I do have a kind and decent pain management physician (thank heavens, it took years to find him), but I am limited by Medicare and he is one of the few pain physicians in the area.

I do not enjoy collecting social security and living in poverty. I tried working, but my request for an ergonomic desk was too much. I got treated with ridicule asking for some basic cheap accommodations.

It is a psychological kick in the teeth, when you are told the pain is in your head. When you wait six months for a referral, only to find a doctor who has not even bothered to look at my imaging, and then makes snide comments about psychological issues.

They don’t look into the reasons, the hopelessness, the invalidation, the ignorant comments we put up with, and the ongoing fear of more pain, or of no help. The DEA has all but made chronic pain a crime. More and more patients are being funneled to fewer doctors and those doctors are under scrutiny by the DEA.

They sensationalized the OxyContin scare, making ignorant people believe it was a scourge. Instead of questioning why there are so many addicts in our society and doing something about it, they targeted legitimate pain patients that need these medications to function. They have been on a witch hunt going after good compassionate doctors.

Pain patients live in fear every day. Fear the pain will get worse, fear that the medication they take will be taken away, fear of losing more than they already have.

I have no social life anymore. Doing basic things that I once took for granted are now daunting tasks. If I overdo an activity, I will spend the next two days on the couch recuperating.

I don’t want to drop out of life completely. I can’t let the pain win! Yet I have nowhere to turn, my pain doctor is an hour away and always overbooked. I cannot go to the ER, where I would be treated like a crazy person and ignored, or called a drug seeker and threatened with jail. I have to ride it out by myself, with my heating pad and TENs unit. I have to hope the pain stops.

There is so much ignorance and false information out there. It doesn’t appear that things are getting better, they are getting worse. Everything is our fault! If we speak up, we are labeled troublemakers or drug addicts. If we are unemotional and stoic, then we must not be in pain.

We can’t win.

12_7.jpgKathy Cooper lives in Santa Fe, New Mexico.

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The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

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Authored by: Kathy Cooper

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Patricia Gillian Campbell-symons

I know exactly how you all feel I am a 65 year old pensiomer who has due to a congenital dislocated left hip which has put my spine out of alinement has suffered osteoarthritis of the spine and all weight bearing joints plus my elbowws and hands , crumbling disc’sin my neck and lumber region, c.o.p.d, nasal problems, I had been diagnosed with osteoarthritis fourty years ago and although was given painkillers I was totaly left on my own with no help from anyone when I tried to get disability allowance I was told I was not disabled enough, it was only eight years ago that I managed to get that through the help of a social worker, I now am belived when I say the amount of pain I am in and thanks to arthritis care I can keep up with all the new things that are coming on the market to manage the pain a geat deal better

Susan Levy

Felipe,
There is no need for name calling. Dr. Sarno is not a quack. Thousands of people have been cured using his methods. If I wouldn’t have had first hand experience, I would not be so emphatic about this.
Kathy,
Please just check it out. It is the fear that is keeping you in so much pain. The pain is not “all in your head.” Please also search for Dr. Howard Schubiner, Dr. John Stracks, Dr. Mark Sopher. They would be able to tell you if, indeed you could be helped using the mind/body method. Check out the TMSWiki.org. What have you got to loose?
Wishing you the best,
Susan

Felipe

I’d leave Sarno out of the equation here. Do you really think Kathy Cooper’s pain (and that of so many others here) can be cured by a quack who manufactured a diagnosis claiming back pain is due to muscle stress from repressed anger?
Even Freud, a physician, would find Sarno insane.

Pete Nyberg

Ms. Cooper, I am so sorry that you have been passed around and over looked by so many who call themselves physicians. I suffer intractable pain from Arachnoidits. I have had so much trouble just trying to get a doctor to treat me with the medications I need to be able to do anything.

You mentioned scar tissue and having what I assume to be several Epidural Steroid Injections. I am not a doctor, but if I had to guess I would say that there is a high possibility that you also have Arachnoiditis. Google it and go to http://www.arachnoiditis.com/ . If you contact the doctor on that website, they will help you. You can even send your imaging and other information for a review, and they will tell you if there is evidence of Arachnoiditis in any of your MRIs.

Susan Levy

I can identify with all of the above. Please read Dr. Sarno’s Book, “Healing Back Pain” and go to the TMSwiki.org site. You will find people who have been cured completely from their pain. I am one of them. Also search for “Thank You Dr. Sarno” where hundreds of people wrote letters to thank him for saving their lives.

I hope this helps. I know what you are going through.

Julie Anna Bloodworth

Kathy, my heart goes out to you. I too am in the same situation. I had a microdiscectomy 12 years ago which caused so much scar tissue I lost all “normal” feeling in my right leg down to my right foot and three toes. When I say I lost normal sensation but the neuropathy, burning, stinging, and pain like a hot poker are there all of the time. I was “kicked” out of 3 pain providers because I caused trouble, which just means that I was pushing to find something to help the non-stop pain. I finally found a GREAT physician (a physician that treats other problems) that was helpful with meds and set me up with a good Anesthesiologist/Radiologist who actually did pain blocks which helped some. I finally ended up with a spinal fusion and a lot of metal in my back but the pain is now manageable with medication (I too use Marijuana although it is still illegal in my state). However, now I have problems with Pharmacy Staff who treat me like a junkie and are rude to me. The Pain Community is great and they help as much as they can mentally and while I hate that others are in my situation, somehow that seems to make it more bearable. Blessings and Healing Energy to you.

Cheryl Grafje

I feel like someone just wrote my life story!!!! I just moved to Pa. and getting set with new doctors is horrible, i wish i never moved. The one rhuematologist asked me if i sought psychiatric help yet!! What, i have been diagnosed with Fibryo, psoriattic arthritis, and other illnesses. I am in pain all the time, I am just like Kathy, but if they think we are crazy it’s because they bring us to that. By not believing we are truuly sick and need the medication we are on!!!!

Chris

I believe you, Ms. Cooper. Two words: medical marijuana. If you haven’t tried it, you owe it to yourself. It isn’t a miracle cure, but for some people it is pretty close. It is infinitely safer (it is impossible to die from a marijuana “overdose”) and it has far fewer side effects than any of the opioids available. It reduces both physical pain and the anxiety that goes along with pain.

Janice Reynolds

My heart goes out to you, Kathy; for professional who have vowed to “do no harm”, too many providers feel that only applies to them. The media of course does not help but rather looks for ways to negate the person with pain’s experience. Please join us at The Pain Community for support http://www.paincommunity.org.