In 2003, I had my beautiful, gorgeous and sweet baby, 3 weeks early and after 5 days (yes, 5 days) of labour. As you can well imagine, when I got to the hospital (which also happened to be my birthday) I had been in labour for 4 days. I was tired, my blood pressure was going up and it was time to get her out. Physically, she was fine, so there were no worries about my daughter.
My back felt bruised, swollen and unsteady and I had had an epidural with her birth, but I assumed that it would go away. I went back to work ten days later as I worked for myself. Three months later – I still felt unsteady. My spine felt tender and I was getting concerned. I was out for a walk with my 120 pound dog, toddler and infant. My toddler ran out in the street and I went to scoop her up. It felt like I had been shot.
My legs went out and I was in white-hot blinding pain. It took me almost forty-five minutes to get home from my usual five minute walk. I managed to get us into my bedroom, shut the door and call my husband.
That was the beginning.
Since then I have had several occasions when I can’t walk, migraine headaches, insomnia, burning pain, loss of function of my hands and face, numbness, electrical shocks, cramping, shooting pain. Currently, I am technically un-diagnosed and am floating around the system. It is awful, but I have seen and know people who have had worse. I have done numerous different therapies, medications, tests, and seven years later, I have no answers and am still in pain.
Losing some friends and family; it has made me want to create an enhanced awareness about Pain Patients.
We are treated like pariahs, criminals, junkies, nut-jobs and the like. We are misunderstood, misdiagnosed, dismissed, referred-out and judged. Pain is invisible and the human brain will delete the actual physical memory of pain. Pain is different for everyone, making it difficult to relate. What is bad for one is nothing to another.
I want to increase understanding and acceptance from the Medical Profession that we are real people, with real problems, with real pain. The Health Care System needs to be properly educated on Pain Medication, Pain Management and Treatment for pain. So that there is hope out there for us.
We need to be heard and recognized.
Thanks for building this site for all of us Painies!!
I hate how the nurses and pharmacist make me feel about my pain drugs. I am going on almost 5 years of nerve pain.
Oh you are so right about the medical community. They think if they cant see it, it must not be there. The true junkies have ruined it for people that truly need help, and it is a crying shame. My 84 year old grandma found out she was dying and asked for something for her nerves. The doctor said, and I quote, “We can’t give her anything. She might get addicted.” What a bunch of asshats!!! I truly hope that you find a doctor that will listen and help, and soon. Just don’t give up. Keep talking to different doctors until someone listens and recognizes your problem!! Good luck!
It shocks me when Dr.s’ say that about the elderly. My sister in laws father – aged 80 something had 4 collapsed vertebrae. He stated that the wind hurt, his pain was raw and immense. He was given pain medication by his Dr. He was also dying. They knew that he did not have alot of time left, maybe a few years, maybe a few months.
The pain meds weren’t strong enough, so he sat in a chair and suffered. He didn’t have the strength to fight his wife and daughters, who were against him taking any more medications. They thought he might get addicted as well? I mean seriously, did it matter at that point? So, their paranoia – based on the media’s erroneous reporting – made his last few years painful, stressful and agonizing. I wonder if they were in his shoes if they would appreciate it?
Amen!
Yes, I take pain pills, every. single. day.
I would give anything to not need them, I don’t take them for fun, I don’t take them to feel funky. I take them so I can function, to take the edge off the nerve pain that makes it feel like someone is happily hammering an ice-pick into my ear.
Like I’ve said before, if you don’t have a limp, or some other sort of physical manifestation of your pain, if nothing is bleeding, swollen, scarred or broken, it’s hard to make yourself heard.
Nobody takes you seriously, your doctor says you’re “hooked” on your pills.
I hear you, I see you, and thank you for hearing me.
I have my own as yet undiagnosed pain. Maybe Ankylosing Spondylitis or Psoriatic Arthritis, or who knows what. As a 21-year-old outwardly healthy woman, I know the skepticism. I know the asshole doctor who doesn’t take me seriously. I know the professors that don’t believe me when I’m in too much pain to go to class. Luckily I just found a new doctor this month, and physical therapy also seems to be helping some. But I can’t really afford to spend $40 a week on PT indefinitely.
Unfortunately my treatment is complicated by the fact that I have chronic digestive problems as well. Anti-inflammatories make my intestines spasm (hi, further intense pain and diarrhea) and have other fun side effects. Every day I decide whether I want to have pain radiating from my SI joints, hands and whatever other joints feel like being cranky that day, or if I want to deal with the intestinal spasming and 4+ hours spent in the restroom. And really, there’s always a fair amount of overlap whichever decision I make.
So many people – doctors, friends, relatives, complete strangers – seem to believe that you can just think away the pain. That you just aren’t trying hard enough. That the drugs are something you are taking every day, so it must be a bad thing. Because you NEED to take them to function.
A diabetic needs to take insulin to function. But no one suggests they are addicted to their meds and just need to “try harder” to deal with their health issue on their own. No doctor would say they just need to learn to distract themselves from the problem. No one would even hint that they could somehow, through the power of their mind, make their diabetes better by simply being a stronger person and ignoring it into submission.
Those of us in pain every moment of every day ARE expected to perform these miracles. Somehow, because the pain does not show up as a measurable number on a nice sterile test, it must be less real and less important.
Pain changes and affects and dictates our lives every single day. I can’t think of anything more real or important than that.