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back sufferer who feels at end of rope
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tiredpain posted:
Hi guys, I'm Emmie, 42yrs old and a 10yr sufferer of severe lower back pain with radiation to hips and legs with a new diagnosis of fibromyalgia. I'm in so much pain I feel like screaming - any little thing I do brings on more pain. My injury occured after on the job accident and I have a worker's comp Dr. that doesn't seem to care about what I feel, etc. and I worker's comp won't let me change Drs. so I'm stick with doc and staff that I don't feel the communication goes 2 way. I applied for disabilty in summer and still waiting to hear results but pain Dr. isn't very supportive or caring about this issue or anything. I've been depressed and anxious for months which keeps getting worse due to our money or should I say lack of it along with pain, etc. We are pretty much broke and getting closer to completely broke quick. I pray to God daily and beg Him not to let us lose our home. I want to stay in our home so bad but we are about to be in situation where we can't make payments. The only med. insurance I could find is so expensive I am going to have to let that go in a couple months and be without insurance, can't afford my meds - Oh God I can't take all of this. I feel like curling up in bed and never getting up. I don't have mental or physical strength to handle all these problems, to handle losing my home,etc. I just want God to give my husband a job with benefits that pays enough for our bills and for me to get disability to help pay bills. I feel so guilty that I can't contribute to household income anymore.
Everything is just such a horrible, horrible mess. Please pray for me and my husband Tim.
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painshadow responded:
This post was 4 years ago AND NO ONE REPLIED???? I guess this site isn't very good.
I'm going to tell u that I hope u are still with your husband. If u are..I'm going to thank God for you and that is because I do not have one. I too have debilitating back pain and fibromyalgia as well as RA. I am raising 2 preteens full time and I'm 48. I head back to work in 2 months. I'm scared.
IF U DO NOT STILL have your husband..my God...shame on him, AND if U HAVE LOST EVERYTHING...I pray u will find peace in your day.
 
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tiredpain replied to painshadow's response:
Thank you for your prayers. I appreciate your response very much and I will keep you and your kids in my prayers.
 
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cweinbl replied to tiredpain's response:
Just one medication wiped out 80% of my chronic severe back and leg pain, adding 9 wonderful years to my university career. It's called Fentanyl Transdermal. No one needs to suffer when we live with powerful pain medications. Ask your doctor about it. If that physician will not prescribe the kind of medication that you apparently require, find another one who will prescribe it. I'm not recommending that you specifically ask for Fentanyl. That raises a red flag with some doctors. But know that such medications exist and do whatever it takes to try a variety of them until you discover one, or a combination, that works best with your unique body chemistry. Good luck.
 
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shershersher replied to cweinbl's response:
I am hoping for something like that. I spend each day on the sofa 'cause to do anything hurts to much. Friends have stopped asking me out for dinner or anything because I usually have to excuse myself to go lay down in the car or ask to go home. I am only in my fifties, and am a disabled singer.
I have begun to see a pain specialist, but do not have very high hopes. The quality of life for me is non-existent..compared to a few years back, when I lived in another state, and my doc prescribed for me enough that I could still work.
I have had 4 surgeries...because I couldn't walk without severe pain. Now, I have severe pain after the surgeries. I would not wish this on my worst enemy. I am actually shunned socially because of the pain, and because I turn down social invitations because of the pain.
I have a prescription for (3) .75 hydrocodone daily, compared to the (6) I used to get in another state. Really? And the doc is threatening to stop prescribing those......like a punishment or something. I used to be so vital.
 
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shershersher replied to cweinbl's response:
How did you get so lucky, not to be treated like a criminal?
 
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cweinbl replied to shershersher's response:
Shershersher, you and I may have identical conditions and medical histories. My degenerative disc disease began just after my 17th birthday (I'm now 61). I had to retire from a rewarding career as a university administrator at age 51. I'm in constant pain which varies from moderate to severe. I'm now able to stand for about 5 min and sit upright for about 20 min. Otherwise, I must be horizontal or nearly horizontal. Although I have both nociceptive and neuropathic pain, my most disabling pain is nociceptive, which is why I'm not a candidate for the spinal cord stimulator.


How am I "not treated like a criminal?" Well, I must admit that my doctor is literally a lifelong friend. His dad and my dad were also lifelong friends, grew up together and eventually went to the same medical school (Michigan). As my close friend, my physician trusts me and he acknowledges that I conduct more daily research on chronic pain than he does. He has allowed me to try virtually every possible combination of opioids and off-label medications. It took years to discover which combinations of medications were appropriate and efficacious for my unique body chemistry. Would he do the same with all of his patients? I don't know. I hope so. But I'm very lucky to have him as a friend and as my doctor.


I should also say that I attended two pain management programs and tried almost every possible remedy for chronic severe pain. Had those programs delivered success for me, I would not have left them and returned to my family doctor. I should also mention that it is advantageous to have only one physician prescribing my medications. It eliminates the potential for nasty drug interactions, which can occur when one doctor is prescribing medications that other doctors are unaware of.


Of course, not everyone can have a lifelong friend as a family doctor or internist. So, maximizing the potential for trust is essential. The better she or he knows you, the more likely you'll be able to try a dozen different combinations of drugs.


I'll be honest with you. I could swallow hydrocodone tabs all day long and remain in misery. It's very far from a potent pain medication for moderate to severe pain. Your doctor should know this.


Fentanyl wiped out 80% of my pain for a number of years, until I became tolerant to it. I was able to extend my university career by 9 awesome and rewarding years because of one medication. Fentanyl Transdermal is the most potent drug available for chronic pain. It is so powerful that it is delivered in micrograms, not milligrams. The patches are supposed to work for three days; but I've never heard of someone that said the patch helped after 48 hours. Regardless, it's our best ammunition for chronic pain. Many people using it also have a fast-acting opioid for breakthrough pain, such as oxycodone or hydrocodone. But research clearly proves that people with chronic pain are best served with a long-acting medication (Kadian, Fentanyl Transdermal, Oxycontin, etc.), backed up by a potent fast-acting opioid for breakthrough pain.


I would add to the two medications mentioned above, an anti-inflammatory (ex. Celebrex) and an anti-depressant (ex. Cymbalta), because anti-depressants inhibit the re-uptake of plasma serotonin (one of the body's natural pain fighting chemicals).
 
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tiredpain replied to cweinbl's response:
I wish so much I had a pain Dr. that I could talk with and feel comfortable with like you do. I am stuck with a bad worker's comp. pain Dr. who doesn't care 1 bit about me and doesn't even see me once a yr. I have a nurse practitioner who does help & really listens to me but, of course, if worker's comp. doesn't want to pay for a different drug or treatment there is nothing she can do and the Dr. is not going to fight for me to get to try new meds to see if they work better and I need something that works better for the pain without shutting my bladder down. I've asked worker's comp. to get a different Dr. and they said absolutely not! So, I'm stuck with a bad Dr. who doesn't really give a crap aand worker's comp. who also doesn't care if I'm hurting or not. Dr.'s like this shouldn't go into this field if they have no compassion or caring for their pts. and aren't going to do everything in their power to help you with your pain.
 
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pain1970 responded:
Tired pain,
Your story is so much like me it is just like reading my life.my Doctor just put me on a new medication called fitenal patch 25 mg sorry for the misspelling.
The doctor has tried to give me the smaller amounts of oxycodone 10mg/ it helped but now I need HELP just like you from the bills to feeling bad not helping my spouse with the bills and we pay rent we pay $800.00 it does not seem like a lot but it is with only one of us working.
I feel like you I just want to curl up in the bed and never come out but I feel so bad either in bed or out I hurt so bad you wonder some times if you would be better off dead at least you would not be in pain like we are.
I do not misuse my meds or be a junkie I am 44 grown man with a great education but It does me no good when I cannot use it because I am in this terrible pain in my lower back and it goes to my legs.
You are in my prayers and please stay I touch and please keep me up on all of this pain stuff I am very new at this all your prayers and help will be so helpful to me.


Thanks,
Mark
 
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tiredpain replied to pain1970's response:
Mark,
You are in my prayers and I hope the fentanyl helps your pain. The hell we experience with the pain, the guilt and the desperation for money should never happen in this country and pain shouldn't go undertreated - not in this day and time! I pray things will get better for you. Feel free to write anytime. I am having the pain issues and trying to take care of my elderly parents who are in ill health. I'm in so much pain that it's hard to take care of myself much less anybody else. But there's no one else to help.
 
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cweinbl replied to tiredpain's response:
Actually, I don't work with or need a "pain (management) doctor." I went through two comprehensive pain management programs. I still use the biofeedback that I learned. Everything else failed.
As my family doctor has known me for years and trusts me, I have him prescribe all of my meds. I've discovered that little or no trust exists with PM physicians. They demand that contracts be signed and will drop you in a heartbeat if you violate it. But your family doctor might be far more trusting. Just a thought.
Also, the 25 mcg Fentanyl patch is almost the lowest dosage possible. If you still have BT pain and your oxycodone isn't helping enough, then ask for the 50 mcg or 75 mcg Fentanyl patch. You can eventually work up to the 100 mcg patch, if necessary. Communicate this with your doctor. If it doesn't work, seek a new physician.
Nothing is more important than your health. Continue to seek a compassionate physician who will treat your pain with efficacious means, including whatever medication works best with your unique body chemistry. Good luck.
 
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danika1recovia responded:
Hi,
First I want to offer my condolences, I can see that this has been a tough journey for you. I want to suggest that you look into a functional rehabilitation program if you have not already. These programs often work with individuals that were injured on the job and need treatment for chronic pain. There are several programs like this around the country and the goal of such a program is to heal the body as a whole. Chronic pain not only affects its victims physically, but it can also affect them mentally and emotionally. It is important to ensure that every part of the body is healed in functioning properly. If you would like more information on such a program I would be happy to provide you with some.
 
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cweinbl replied to danika1recovia's response:
Thanks Danika. You're correct. Decades of chronic pain can erode other physical and emotional conditions, especially profound and lasting depression. And that effects the entire family and co-workers.


We know from recent research that chronic pain over decades also has a physical attribute. It reduces the size of our cerebral cortex, resulting in an increase in confusion and a reduction in cognition and memory.


That's why the best pain management programs offer the assistance of a therapist, social worker, psychologist or psychiatrist. I can say unequivocally that had I not already been a therapist when my pain became severe and chronic, I would not have been able to complete my university career. Nor would I have been able to continue to support my family.


My father was a noted psychiatrist and I was a vocational rehabilitation counselor for 7 years, which enabled me to maintain a good perspective. I learned how to stop worrying about that which I cannot change and start focusing on what I can change for the better.


There are millions of people who will never be able to sit, stand, walk, feed or bathe themselves or care for their most basic needs. Visit a local nursing home or rehabilitation center for proof.


I had to retire from a rewarding career 11 years ago - at age 51. I can no longer keep up physically with family and friends. My life is limited by my need to remain horizontal nearly all of the time.


However, I do not have a terminal disease. I can sit, stand, walk and care for my own needs. I can still love my family; they love me and care for me.


Millions of people will live out their lives without these simple pleasures that we all take for granted. On your worst day, filled with severe pain and depression, you are still light years ahead of the person with severe chronic pain who is a paraplegic or quadriplegic, forced to live in a nursing home for the remainder of his life.


Living with chronic pain is an exercise in perspective. On your worst day, millions of other people are in far worse circumstances than you are. Many are unable to speak, see, hear or process information. They cannot move. They cannot feed or bathe themselves. They will never again be able to sit, stand, walk, work or care for their loved ones.


As bad as it is now, it could be much worse. I've seen and worked with such people. I know. Be grateful for what you have.


Finally, I've discovered that we can do much better when we have a doctor willing to try each and every possible combination of medications and treatments for chronic pain. With my cooperative family doctor, it took years of trial and error to discover the perfect combination of pain medications and off-label drugs that work with my unique body chemistry to significantly reduce my pain. Everything comes into play. If you've never tried marijuana and you live with chronic pain... try it! You have nothing to lose. Research reveals that THC binds with opioid receptors in the brain, much the same way as powerful pain drugs do. If your back is to the wall; If you can no longer work or care for your family... what do you have to lose?


There's no cure. But discovering the best combination of pain medications and off-label drugs that work with our body chemistry to lower chronic pain is like living in nirvana. Just one of those drugs added 9 wonderful and rewarding years to my career. It's extremely powerful.


Find a doctor willing to let you try various combinations of medications until you find the ones that help the most. There are a few doctors like that. Unfortunately, it can take a lot of time to find such a physician and then even more time to try each possible combination of medications. But when you find that perfect combination for you, happiness can return.


Good luck!
 
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An_264200 replied to cweinbl's response:
You have such a positive outlook, something that I am sure has helped you tremendously. Yes you are correct, it takes a combination of treatments and practices that can help manage the pain, each is likely different for every person. The issue with this tactic is that finding a center and a physician who can help is very difficult. As I mentioned previously, a functional rehabilitation center is a positive route to take, one that has been proven to be successful. I am not sure your location or willingness to try such a program but there is a great one in Arizona. It is called Recovia and it is unique in that they create a program and schedule specifically designed for each patient. Look it up and let me know your thoughts!
 
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cweinbl replied to An_264200's response:
My luck is having a family practitioner who is also a lifelong close friend. Because we have been lifelong friends, he trusts me. Together, over more than 25 years, we've discovered the precise combination of pain medications and off-label drugs that work best for my unique body chemistry. We finally got it right, although literally decades of trial & error and research were required.


Trust does not come so easily with a stranger. In this, I feel so sorry for people suffering physically, emotionally and financially. You deserve the same care that I receive. Easing your pain requires a physician willing to prescribe significant opioids, not just PT or injections. Yet finding such family doctors is difficult and time-consuming.


Chronic pain not only effects you, your income and your emotional well-being. It also effects your family and your family's finances. My heart breaks for those who can't access the care that they deserve and need. If just one drug added 9 awesome years to my career, it might accomplish the same for someone else.


Yet many physicians today refuse to prescribe the medications and powerful dosages required to relieve chronic pain at all levels. They fear a patient might OD, or worse yet, they fear the DEA. This fear occasionally overwhelms the Hippocratic Oath.


Perhaps one of the best things we can do is to support politicians who come to the aid of the disabled. In an age with significant financial inequality, we must elect the candidate who cares about US, not millionaire campaign contributors, whose primary goal is to extract tax incentives for the wealthy while simultaneously ignoring the plight of the poor, minority and working class citizens. We disabled might be near the bottom of that pile of the unserved and ignored.


We require a revolution to help those in need, rather than those who will never be in need. Change is required and it is accomplished by voting out the politicians who serve the wealthy and big business at the expense of the rest of us, especially disabled citizens.


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