Chronic Pain Support Group

Physicians and professionalsdefine pain as chronic if it lasts longer than three to six months and is persistent. It's distinct from acute pain that is a direct result of injury or trauma. This support group is dedicated to those suffering from chronic pain. Discuss treatments that have worked for you, find advice for your specific experience, and find support. You're not...

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Brain & Nervous System
/ Chronic Pain Support Group

Doctors still dismissing everything. Bad week.

blizzard2014
blizzard2014

I now apparently do have an enlarged right sided heart from who knows. They say it is common for people who have had blood clots in the lungs. But it can also be from the sleep apnea, or even from the high blood pressure. The heart doc said it's nothing to worry about and brushed it off because I am young and my heart is still pumping good. Why do doc's just dismiss everything and say you're young. Three other doc's brushed off the abnormal EKG's that were saying I had left ventrivular hypertrophy. It turns out I have right ventricular hypretrophy. I hate even bringing up issues with docs these days. how do you dismiss a whole host of symptoms and diseases, but yet you will prescribe medicine for them? I feel like an old broken down car on it's last miles. I have had three of the worst weeks painwise and physical wise in six years. I have been in so much pain, global pain, muscle spasms, chroic mid grade headaches, chronic muscle soreness, weakness, and flu-like symptoms. Left sided chest pains. I have had to put in my 2 week notice for my part time job. My legs, and even good leg almost spasmed up so hard the other night I didn't think I was going to make it through the last hour of my shift. My legs are actually getting weaker from working than they were before I startred. Working and walking every day should be like a form of physical therapy and leave me stronger. It's getting bad again where even the weekend and an extra day off of resting is not even allowing my body fron recouperating from work. I took a day off yesterday and felt good today at work, now at the end of today's shift, I'm back in the same painful condition I was before I took the day off and I am taking it easy at work not even doing the heavy jobs. I have two more nights to work and then I turn in the keys to the building and my uniform. I guess it's back on the couch to regroup again. I feel like I'm drowning and as soon as I can get a few weeks off, I will be able to breathe again. What is there left if I can't even hang onto a part time job. At least I am trying. I won't stay on couch forever though this time. I will keep on trying different jobs until something works, or until I am completely incapacitated. I hope the rest of you all are fairing better than me. Hugs.

blizzard2014
blizzard2014
I happen to believe that the APS flares and causes a lot of my issues as it is cyclical. But I have no one to back this up as most doc's don't even know what I'm talking about when I even mention the disease. Not one single ER doc I have ever run across has even heard of the disease. I still get resistance from my docs because I keep my INR above a 3.0, when most doctors freak, because normal INR for people on blood thinners is 2.0 to 3.0. A oncologist who at least knew more about this condition than my Hematologist wrote me a detailed letter describing that with persistently high APS antibody levels, and bad damage to the veins in my right leg, I am a high risk for recurrent thrombosis and to never be taken off of blood thinners, and that my INR is to remain above a 3.0 at all times. But even he only believes that once on blood thinners all is good when it is not.
blizzard2014
blizzard2014
Here is what some of APS is and can do to a person. But still under recognized by the medical community.

Antiphospholipid syndrome is also referred to as, 'Phospholipid Antibody Syndrome,' or, 'Hughes Syndrome,' after the doctor who described it. People who do not have this disorder may also have antiphospholipid antibodies in their blood; about two-percent of the population does. Some of these antibodies are harmless, and can be found in association with a number of conditions such as parasitic, bacterial, and viral infections. Certain medications can cause these antibodies to be produced in a person's blood, such as quinine, antibiotics, procainamide, and hydralizine. The illegal drug cocaine can cause these antibodies to be produced in a person's blood as well.
The antiphospholipid antibody is a protein, although it is not considered to be a normal one, and it has been found in people with a variety of illnesses. The illnesses that these people have experienced include stroke, phlebitis, thrombosis, low blood platelet counts, migraine headaches, as well as a rare form of inflammation of the nervous tissues of the spinal cord and brain referred to as, 'Transverse Myelitis.' These antibodies have been found in greater than half of persons with Lupus Erythematosus. Persons with atypical Multiple Sclerosis, as well as those with slowly progressive memory issues also have these antibodies in their blood stream.
blizzard2014
blizzard2014
People with APS have an increased risk for several different things including issues related to blood clotting. Blood clots in the arteries, clots that go to the person's lungs, or clots in the person's veins are risks. Persons with APS may experience miscarriages that can occur at any stage of pregnancy, although they are more common during the late first trimester or early second trimester. Pre-eclampsia, eclampsia, premature delivery, and fetal growth retardation are complications that may be experienced. Heart attacks, angina, and strokes, as well as transient ischemic attacks and loss of vision are additional risks. Persons with APS may develop heart problems which may require either valve surgery or replacement. They may experience decreased levels of blood platelets that are involved in blood clotting, and they may develop a bluish rash that may be either transient or persistent. The feet or legs of persons with APS may develop skin ulcers.
There are some other features that persons with APS may develop, including neurological symptoms that are similar to Multiple Sclerosis. The person may experience migraine headaches, visual disturbances, and difficulty thinking clearly. Neurological symptoms including dizziness, vision loss, seizures, loss of balance, and abnormal movements may occur as well.
OlderCPer
OlderCPer
So if you have a Dr. thats DX'd you with this APS disease, how come that Dr. doesn't handle all of your treatment?
blizzard2014
blizzard2014
OCP, because she is a hematologist and she is not up to date on the disease. Most blood doc's only care about cancer patients and tend to not take clotters as seriously since we're not literally dying at the moment. She believes the disease is controlled if you are on blood thinners, she discharged me and told me to only come back to her if I have another clot. The only thing that I found odd was she was surprised to find out that I had made it 4 years without another clot. I guess I'm one of the lucky ones. She doesn't care to see me so I stopped seeing her. Why pound sand over and over again looking for a different result. That is the true definition of insanity lol.
blizzard2014
blizzard2014
She also does not believe in having my INR above a 3.0, because she is not well versed on this disease. The oncologist I saw is well versed, but he also downplays everything. After telling him how disabling it is for me to sit in a car seat/regular chair, he said that he thinks I can drive trucks again. So, a doc that tells me I am a high risk for clots is saying I should sit in a truck all day in pain and work. No one listens to me so I quit trying. Eventually I will only use 1 PCP just to get my refills like I do now (haven't seen my PCP in almost a year) and all he does is fill my scripts. I'm tired of being downplayed so I just stay quiet. Why fight the system. At least I have my meds. That's all that matters.
blizzard2014
blizzard2014
The docs dismiss everything unless you're dying. If I have a new clot, they will burst into action, but right now I am largely ignored. I'm gonna get a copy of the heart scan and see what it says. Then I will proceed from there. I mean, it really doesn't matter if a doc believes me. At least I know how bad it is for me. That is all that matters. If I was rich I would straight up hire a 1 good doc to take care of me. I know I'm not crazy because I network with many APS patients and they go through similar struggles trying to find a good blood doc, and some have Rheummies, since the APS antibodies are auto-immune antibodies that attack the bloods. But again, only some Rheummies understand the disease while most balk at it and sent you right back to the blood doc like the one I saw did. Once he saw I did not have SLE Lupus, he said I have a blood issue and why was I coming to him. I guess I am striking gout with a lot of docs cept my pain doc. My pain doc believes me and is good just won't fill out disability forms. But he is always worried about my blood clotting when I see him.
blizzard2014
blizzard2014
You can read about the disease if you want. I have two high antibody positives 2 years apart. My antibody levels remain super-elevated and one clinical event which is the blood clots. That is how a positive diagnosis is made. The two positive blood tests only need to be made 12 weeks apart. I went for two years. These are from two different laboratories. My diagnosis is not a shot in the dark either. It is definitive through objective medical tests. The problem is lack of understanding. My PCP refused to even look it up online. It just frustrates me.
OlderCPer
OlderCPer
Have you done Research for a Hospital where there doing Research and Treatment for this Disease and if found one gone to a Dr. at that hospital?
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