Living with chronic pain is no picnic. Can you imagine just waking up every morning in pain? Better yet imagine having this pain with a diagnosis that it not yet understood by the general population."
“You have WHAT?” “LUPUS?” “FIBROMYLAGIA?” “ANTIPHISIPLOID SYNDROME?”
Lupus is a chronic disease that can cause inflammation, pain, and tissue damage throughout the body. Lupus is an autoimmune disease, in which a person's immune system attacks its own tissues as though they were foreign substances. If you develop serious lupus, you may have problems with your kidneys, heart, lungs, or blood cells.
Although some people with lupus have mild symptoms, the disease can become severe. For most people, ongoing monitoring and treatment can control symptoms and prevent serious organ damage.
ISSY'S LUPUS INFORMATION CENTER
Fibromyalgia (FM) is an increasingly recognized chronic pain illness, which is characterized by widespread musculoskeletal aches, pain and stiffness, soft tissue tenderness, general fatigue and sleep disturbances. The most common sites of pain include the neck, back, shoulders, pelvic girdle and hands, but any body part can be involved. Fibromyalgia patients experience a range of symptoms of varying intensities that wax and wane over time.
Miss Kitty Fibromyalgia Center
Antiphospholipid Syndrome is a disorder in which the blood clotting system begins to form blood clots in the veins or arteries without obvious reason. The symptoms of Antiphospholipid Syndrome include blood clots (thromboses) in leg or arm veins and/or arteries; blood clots which travel to the lungs (pulmonary emboli); sudden loss of vision; occasional episodes of numbness, tingling, or weakness in the face or limbs; stroke; seizures; and recurrent miscarriages. All of these symptoms are the result of blood clots occurring in small to medium sized blood vessels. Most people affected with this disorder have only one or two of any of these symptoms. They are however at risk for developing additional symptoms if not treated appropriately or monitored by a physician knowledgeable about the disorder.
Antiphisiploid Syndrome
I had an opportunity last evening to have to go to the ER because I was experiencing horrendous chest pain. Or what I thought was chest pain. What I was having was the most excruciating and unbearable pain I have ever experienced in my entire life. I actually thought I was having a heart attack. Visions of all sorts of cardiac procedures were storming through my head.
I had to wake Gary up. He called the paramedics who quickly arrived. Actually 3 ambulances came. They took my blood pressure which ws 170 over 100. But they did a field cardiogram and a heart attack was ruled out. I was taken to the hospital anyway because of the extent of my pain and my elevated pressure.
At the hospital I was quickly assessed. Blood drawn. I was given a shot of morphine 8 IV push. XRays were taken an abdominal CAT Scan done. Aside from the normal funky blood work, nothing showed.
That's when I was given the "LOOK." Some of you know that look. It's that look you get from the doctor or the nurse. I was finally told that I could not get anymore narcotic pain meds even though they suspected that my pain was from Costochondritis.
The thing is I was riling in pain still. I can't take anti inflammatories for many reasons. Two being I am on coumain and I have multiple GI problems. but they still wanted to keep me overnight for observation. I asked if that was necessary. I was told that it was my decision. Considering I was the one in pain. I was blunt and frank. Telling them that I had more access to pain meds at home then I did there. I felt no reason to stay. The attending had already put a call into my primary. I told them that I believed that he would agree with me and that they should ge my discharge papers ready. And secondly, if they were to keepme the only thing they would be doing would be to screw up my INR leels anyway. History had proven that.
Pain Can Be Tamed
(Article From Time/Life Magazine)
Although an estimated 50 million americans suffer from chronic pain, only 26% of those battling moderate to severe pain are referred to the proper specialists. This doesn't mean other doctors can't treat pain effectively, but the complexity of diagnosing the condition and designing a treatment for a specific patient, especially prescribing possibly addictive narcotic-based painkillers, can make this a difficult and tedious task if a physician isn't well versed in pain management.
Chronic pain is generally defined as persistent pain, like daily migraines, or pain that continues after an injury heals or fails to heal. Everyday aches and pains don't count. "A patient's complaint of 'Oh, doctor, my aching back!' isn't enough to just pull out the prescription pad and write for conventional narcotic meds," says Dr. Russell Portenoy of New York City's Beth Israel Medical Center, president of the American Pain Society, a professional group. Instead, he urges a comprehensive assessment of the pain's characteristics, including its causes and impact on the patient's activity and quality of life. Such an analysis should be performed immediately. Treating Chronic Pain Seriously
We wonder why doctors are leary about prescribing us effective pain meds. Do they worry that we will become addicted?
"Pain patients, by contrast, couldn't be more different. Being on an opioid allows them to interact with their families, to get out of hospitals, and to go back to work. Indeed, their efforts to maintain their health are in marked contradiction to the utter disregard addicts show for their health. If we wish to equate addicts with pain patients, the more appropriate comparison is with the under treated pain patient."
Here is a great site that explains this....Addiction VS Dependance
Anyway, all I am trying to say is that I just want to feel better once in a while. I don't like to be looked at like a drug addict or a drug seeker. I remember those days when I could get out of bed and do 2 or 3 loads of laundry, straighten out the house, get the kids ready and get myself ready all before I had to get to work. Then go to work do my job come home and make dinner. And, still have the energy and not be in any pain. I felt like a million dollar. Now it takes all of my energy just to get in the shower and I have to rest afterwards. My body hurts. Imagine my goods days are like having the flu all the time. Can you imagine what my bad days are like.
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