Education of the “Healthies”
Education of the public may be terrifying because we all have heard the horror stories. People who accuse us of faking for drugs or just over exaggerating. But we continue to run across people who say they want to understand why we hurt and how we hurt. The thing is many of us don’t know how to even describe the severity of what we deal with everyday because it’s been a constant progression of new things added since the beginning.
So what I propose is if someone asks you what exactly you suffer you say that you have a chronic pain condition that leaves you in excruciating pain for 24 hours a day, 7 days a week, 365 days a year. If at this point they seem to think you’re full of it, forget them. But if they seem to be confused or concerned, that is when I explain that the only real sign anyone may have when they first get this, they have excruciating pain that does not fit the injury that they just incurred be it a surgery, a twisted knee, or even just a spider bite.
When I explain it to people I explain the early stages in a way that they can understand. Explaining it like I had an injury that the body that never sent the message to my brain that it healed. So I continue to have the pain so I don’t reinjure the “injury”, the swelling, and a decreased blood flow so that I didn’t bleed out. It was as if my body continued to act to protect me from hurting it any further
As time goes on the pain frequency increases, the severity increases, and the other symptoms continue to advance is well. With continuous swelling and deswelling of the limbs, your muscles start to deteriorate because you can’t bring yourself to use them and when the swelling occurs edema forms causing increased chance of infection. The decreased blood flow causes excruciating pain when the body starts to get blood flow back to a region similar to that when someone who has a leg falling asleep that is just waking up except for us it’s just one capillary or one blood vessel and everything attached to that vessel screams in pain. And since it is not just the entire leg it is not something that feels sane.
Overtime, this repetitive process that happens constantly every month/day/hour starts to wear on persons self esteem, their emotions, their stress level causing them to become depressed, reserved, and not wanting to be in social situations.
Adding in to the factors are the additional symptoms that start to form due to the hypersensitivity of the nerves that failed to transmit this issue in the first place. This makes patients feel even more sensitive to even the movement of air such as a fan, not even blowing on them but in the same room, or the vibrations from the fan, or from riding in a car, or listening to music. Things that were once enjoyable are excruciatingly painful. This is also extremely demoralizing.
You will find the more social or more outgoing patients try to find answers or help find support groups, such as RSD/CRPS Doesn’t Own Me. Those who felt on the edge of society tend to feel more hesitant about talking about their pain even with others who suffer. Slowly making their world smaller and smaller because they feel more and more alone. It is vital for those who are family and friends of patients to reach out to those suffer this and trust in them to tell the truth. Because the pain may seem unreal to those who are healthy, but it seems even more unreal to the patient that this could happen to them.
I hope to inspire everyone to try to keep it simple, try to keep it clear. There is no cure, there is no explanation for the cause, but we hope every day for both. The only thing we can do is make sure that everyone knows the statistics and the defined truths that we do know: that four women to one man have this in the United States, most have genetic ties to Northern Europe, that if caught early there’s a chance for proper treatment and possible remission, but there is no cure, there’s no guarantee it won’t come back, but it is a chance to save another life from dealing with what we deal with everyday. The education of others of the key signs of who is at risk, that there is nothing set in stone, and early recognition of its “ignition.”
Never give up guys, we have so much to give and so much to teach. Not just our friends and family about how vitally important living life to the fullest is, but also educating doctors that sometimes they are not right and sometimes we can also teach them something, and most importantly the strength and conviction of someone who is truly in pain really doesn’t want the drugs for recreational reasons. We just want to have some semblance of our old life back.