I just finished it, thank god! i've been pulling out my hair tryin to get the right words for the past 2 weeks. so here it is, i'd love feedback on it. the main point of it is to make those who don't know about it educated some. i'm sure most of you already know everything in here. the formatting is a bit off, but pretty sure u guys can figure it out!

i will post the responses from my questionnaires sometime within the next few days... they will be anonymous.


Living Everyday on Fire
Considered an invisible disease, Reflex Sympathetic Dystrophy (RSD) is a neurological pain disorder that is still undefined. Due to the lack of communication between doctors during the Civil War, symptoms, tests, and their results were slowly confirmed and recognized in the diagnosis of this disorder. With nerve injuries that couldn’t be fixed in the field, soldiers were put into government hospitals where doctors were able to observe and treat a large population with the same problem. During this time doctors were uncertain how to deal with the uncommon and continuous symptoms presented to them, for doctors were taught to cure diseases, not provide on going treatment for a chronic disorder. Silas Weir-Mitchel wrote in his book Injury of Nerves and Their Consequences (1872):“Under such torments the temper changes, the most amiable grow irritable, the soldier becomes a coward and the strongest man is scarcely less nervous that the most hysterical girl” (qtd. in Moskovitz 6).
After World War II there was another set back in diagnosing RSD. Psychiatry was becoming extremely popular, Freudian psychiatry more specifically, and the idea that a patient’s body was not the origin of where (unfamiliar) diseases started, but that the patient’s mind was. With out knowing how such a small injury could cause such intense and constant burning pain, swelling, hypersensitivity, muscle atrophy , and other unexplained symptoms, doctors were eager to jump on the Freudian bandwagon and would tell patients with RSD that it was all in their head. Avoiding the issue that there was some underlying problem, doctors who believed in such theories would ignore and overlook what was being presented to them and tell their patients to just move on with their life.
With no known cause for the miss fired pain signals, other than that there is something wrong within the central and sympathetic nervous systems, doctors are put up to the challenge of ruling out what is not causing the symptoms instead of being able to take the time to contain the disorder and prevent it from spreading and getting worse. By running standard diagnostic tests such as M.R.I.’s, CT scans, and X-rays, doctors are able to rule out hidden injuries to the bones, muscles and brain. While the initial injury (ex. Fracture or surgery) has healed, the various symptoms would indicate that there is an underlying cause for the pain despite the negative test results. When multiple tests come back without a clear and definite reason for the presented symptoms, the RSD is the last explainable cause- the initial injury triggered something within the nerves to think that there is still an injury and are sending an overload of pain signals to the brain.
Documented and reoccurring symptoms vary, but are still similar in each patient. The symptoms are described by patient Kate Hibbert (New Castle, Australia):
Constant and chronic neuropathic pain, burning pain, muscle atrophy and dysfunction (including cramps), deep bone pain, skin changes, temperature changes, swelling of arm and leg (and hand and foot), fatigue, insomnia, migraines…
She goes on in explaining that because the pain levels are so unpredictable and vary from day to day, any kind of social or professional life is near impossible to keep up, causing depression and a rollercoaster of emotions to follow. Kate also, along with others diagnosed with RSD, mentions that not only hesitant friends and family members but doctors have gone to the point of saying that “RSD doesn’t exist” and that because of not understanding the condition she and others suffering from this unseen disorder “just have to deal with it and its’ not as bad as it seems.”
When early diagnosed, patients are encouraged by their doctors, who range in specialties (neurology, anesthesia, orthopedic and pain management), to under go a series of nerve blocks. Nerve blocks not only help in containing the symptoms from further progressing but also are a diagnostic indicator. A mixture of steroids and anesthetics are injected into the body along the spinal cord. The exact location is dependant on which extremity is being treated; placement of the needle is key. Under local and mild sedation it is important for the patient to be still and calm, yet alert, in order to prevent complications which could result in paralysis or injecting the medication into the wrong area. Once injected, the patient should have an increase in temperature in the targeted extremity, which can also be indicated by a warm feeling inside. A successful block will allow pain relief for anywhere between a few days or weeks. An ideal block will prevent pain from increasing or spreading, along with reducing the intensity. Patients who receive a positive result may have them repeated weekly, monthly, or when ever felt needed upon agreement with their doctor.
When blocks don’t provide adequate relief then there are various medications and combinations of them that are available. The patient may begin to feel that finding the right medications tedious, and almost “guinea pig” like, because each person reacts differently to each drug. While some may experience a high relief in pain for a while, they may become immune to the medications effects by building up a tolerance in their body’s system. Others may be allergic or not like the side effects that occur. An anti-seizure drug is a standard prescription given to those diagnosed with RSD. It helps in controlling the signals that nerves send to the brain. However, many feel that their brain is being “fogged” or that they are put in a “zombie” like state of mind because they cannot think clearly. While the side effects may wear off and balance out over an extended period of time patients may not feel that the pain relief given by this type of drug is worth the lack of alertness and motivation and choose to discontinue the use of this drug. Doctors then move on to common opiates and narcotics to mask the pain. These drugs are highly addictive and people can quickly build up a tolerance. A drug contract is given to the patient and must be signed, stating that they will not abuse the drug and that they are aware of the impairments that they may experience. Drugs in these classes are usually favorable among people because of the high they get. This can lead not only to a drug dependency but to a possible overdose which can be harmful and life threatening. Patients on opiates and narcotics must be seen regularly and monitored to make sure that addiction and drug dependency does not become an issue.
Other medications, like anti-depressants, at various doses are also used in treating neuropathic pain. Flooding the blood stream with endorphins, the goal is to give the body a “natural” high which will reduce pain and also help the patient deal with depression.
When asked if experiencing any emotional/psychological effects, the majority of RSD sufferers answered yes.
Anyone who answers no to this question is in denial! Who wouldn’t! I feel like a burden to others, I feel like I don’t have the strength to fight it on most days, I cry at a drop of a dime, I have become more of a homebody convincing myself who the hell would want to hang with me. Not working at the time has also given me a sense of being useless. I have had thoughts of ending it all. – Ann Beaureguard, age 43, New Hampshire.
Ann is not the only person interviewed that has had thoughts of taking their own life. It is quite common for people with RSD to have these thoughts and not uncommon for some to carry out their suicidal plans. Adam Hausmann, of Erie, Pa, says “Yes, I was very suicidal, and depressed.” Not able to go to school when his flare ups were intense, Adam was confined to bed and reliant on a wheelchair to move around.
When medications and injections are unable to manage the pain, patients are given the option to try more evasive procedures, ones that typically involve surgery. A spinal cord stimulator is one if the more highly recommended implants. A trial stimulator is first tried to verify that the patient receives adequate relief and stimulation. The permanent stimulator involves a battery, approximately the size of an average television remote control, being placed either in the stomach or the back of the hip. The battery is connected to an electrical lead that runs up the spine, touching the nerves just millimeters away from the spinal cord. An electrical flow is then given off and sent through the nerves to the brain, leaving the patient to feel as if the effected area is asleep or tingling. When the current is turned up to a high level, by a remote that is held over the battery, muscle spasms and an occasional feeling of being shocked may occur. The average time to recover from this surgery is two to three months, during which the patient is given a list of several movement restrictions to ensure that the electrical leads are not pulled out of place. Simple movements, such as turning the head, extending the arms, bending over or squatting, are highly discouraged. Sitting straight up and staying flat in bed are recommended to lower the risk of moving the leads. The SCS (spinal cord stimulator) has been effective in giving about 50% of RSD sufferers who choose this option a more “normal” life. The remaining fifty percent have gone on to experience worse pain and have the condition spread to other extremities, even to consume their entire body.
An alternative implant, not recommended for younger patients due to the possible liver damage that can occur, is a pain pump. This gives a consistent release of various drugs (including narcotics, steroids, and muscles relaxers) to relieve the inflammation and mask the pain. Both of these implant options require annual maintenance; replacing the battery, electrical leads, or refilling the medication on a regular basis. Medical insurances are hesitant and often deny coverage of such surgeries because of the high costs and often leave patients in debt trying to pay off medical bills.
Physical therapy is another common part of a treatment plan. Without regular movement the body’s natural response is to freeze up and loose muscle definition. Not only will the effective limb loose strength, but the lack of movement reduces the blood flow which can cause discoloration, temperature changes, and more pain. The amount of pain and muscle loss and deterioration leaves the body unable to function normally, disabling the patient at various levels and leaving them to be dependant on assisted devices and others to help them with simple daily activities and moving around.
Those suffering with RSD must step back and re-evaluate how they live and not let the disease control their life. Karen Clift has two family members that she must watch deal with this horrible disorder and she explains how from an outsider looking in how RSD affects people:
I’ve known Andrea her entire life, she is my niece. RSD has changed Drea in that she recognizes she is limited to what she can do. Physically limited to extremity usage. Emotionally some days are rougher than others. Socially, I believe she has become more of a social bug since she refuses to limit her joy for life. Mentally, when she is around those that she can open up with honestly and express herself about her feelings it helps her mentally.
I’ve known Charlie since 1992, he is my husband. RSD has changed Charlie since he was diagnosed. It has been a life altering event for the entire family. Physically, if he overdoes it the pain is unbearable. Emotionally, as the man of the house and unable to function as before has made it an emotional rollercoaster. Socially, he has become more introvert, he is able to continue working which keeps him going but either the medication or RSD symptoms cause him to keep feelings bottled up.
Patients and their family members are encouraged by their physicians and pain management teams to seek out psychological help and counseling to learn techniques in dealing with the emotional effects that cause added depression and stress that lead to their decline in quality of life. Putting a toll on relationships, as described by Karen, can ultimately lead to huge strains and life changing events such as divorce and other family issues like self-medication with drugs and/or alcohol because they are unable to deal with the changes and overcome the internal pain that comes with seeing themselves and loved ones being tortured by the pain that they must learn to deal with on a daily basis.
Not only are patients told to research RSD, but their friends and family members as well. While not being able to truly understand the daily effects of the continuous pain, outsiders are given a better understanding through educating themselves on the disorder by reading medical and personal documentations that describe the symptoms and their effects. When asked about their thoughts on RSD if they had researched it, friends and family members gave very similar responses:
Yes I have and I think it is awful to have that kind of pain all of the time… many people describe it as being lit on fire burning pain and I can’t imagine on any scale mild or extreme how someone can live with it. It says it makes many people depressed and suicidal because of how painful it really is and that there isn’t really a cure as of now. Which makes me realize what a strong person you are to have that kind of pain and really never try to burden anyone with your struggles and act like everything is ok when I know you are really hurting is truly heroic. – Trudy Curto, age 25, Boulder Creek, California.
With no real cure, research trials and experimental treatments are being done in various parts of the United States and foreign countries. Due to not being FDA approved, doctors in the USA are forced to perform some of these treatments in facilities in such places as Mexico and Germany. Currently the most hopeful, yet controversial, treatment consists of placing the patient in a drug induced coma for up to a week. A high percentage of sufferers under going the drug infusion are left with high relief in pain, and some are even placed into remission for several months. Being experimental and done in foreign countries, insurances do not cover this treatment and are highly priced (up to $50k). Fundraisers are often needed to raise money to go through with such a treatment. Most doctors and facilities that perform such experimental treatments only accept cash payments upfront and may offer payment plans to help patients cover the costs without leaving them in debt.
If the patient would rather not take medication, have injections, or have foreign objects implanted in their body there are several alternative treatments that they can try. Acupuncture, biofeedback, and hyperbaric oxygen treatments (HBOT) are a few of the common non- traditional treatments. These methods of relieving the pain and other symptoms, like the more main stream options, aren’t guaranteed to help. With RSD there is no sure treatment that will work and provide relief for everyone; its all a matter of chance in finding the right way to manage the pain for each patient.
Younger generations hold onto hope that they will live to see and help in research in finding of a cure. There are several teenagers that have started their own online support groups and non profit organizations to help raise awareness and provide financial support for those who are unable to cover costs for medications, treatments, and assisted living devices. These support groups, on such popular websites as Facebook and MySpace, bring together those with RSD with others who have it across the world; allowing a sense of connectivity and feelings that they aren’t alone in the world with this horrible condition. They share their ups and downs with each other, their experiences with various medications and treatments, and offer advice and support to one another. A new family and true life long friendship are formed among those that they may never come face to face with.
Reflex Sympathetic Dystrophy is slowly becoming more recognized in the medical community and in the outside world. With the help of the media and internet, awareness about what it is and how it affects people’s lives is spread much easier than when soldiers were getting injured in the battle fields during the Civil War. Doctors from various parts of the world are working together, trying to come up with a definite reason for the onset of RSD and a way to bring the body back to its once normal state.
The yearning to be able to regain control of their life and not let the disorder decide every little action they make is what pushes each person the RSD to keep going and living. They hope one day they’ll wake up and they won’t have the burning feeling inside of their body, that they can go out with their friends and not have to take breaks every ten minutes because the pain is wearing them out, or that they can let their small children touch their hand without the pain intensifying. RSD pushes the mind to stay optimistic, and without optimism it can define who the person is instead of letting the person define who they are. There is nobody on this earth that should have to live each day as if they’re burning from the inside out. It has been stated throughout the RSD community that “if the devil had created a disease, it would be RSD,” for only the devil would want to torture someone and watch them suffer in the flames that consume them.

*claps,stamps feet and whistles loudly* WOOOOOOO

Awesome, just awesome!!!!!! You've done a fantastic job!! Be very proud of yourself for taking such a complex thing such as rsd and make it real to everyone and also explaining it all in a easy to undertand manner. Even the densest person can "get it" on some level! The only ones who won't are those people whose minds are made up that rsd is a bunch of crap and we're all just hysterical women who want attention. ROFL

Sweep up the hair you pulled out and glue it back on! LOLOL

Hugs,

Karen

Right on Andrea!

That is some good work there. Good job!

Remarkable!!

You nailed it. And it's in words anyone can understand. I still can't really comprehend the disease and it's effects but this sums up my life.

thank you guys for u feedback! it makes me feel great to have been able to get through writing it and to have it be clear enough for anyone to get at least a grasp on it. now i just gotta get through presenting it in class tomorrow w/o crying!

after 11 years of rsd and being 16 at time of onset that is the best describtion of what rsd and how its turns all our lives upside down great work be proud

-carrie

thank you! i got a A+ on my paper

You did an awsome job!!!! I'm glad you got an A+ you definitely deserve it!!!
Would you mind if Icopied your workand put it ina blog on my myspace...My boyfriend has RSD and so many of our friends and family would benefit from reading this!!!

go for it! pass my paper around as much you guys want, i wrote it to help everyone understand or at least try to have a better grasp of it. if i could i'd publish it and have it sent out to everyone and their mothers lol. but ya know.... how ever i can help

A wonderful paper Andrea bravo!
I will pass it around to my friends thank you so much for all of your hard work.

Sandra