As I said in an earlier post, I've been going around in circles with this whatever it is for nigh on 20 years.
I first got sick in High school got somewhat better and then got sick in college.
First they said it was juvenile rheumatoid arthritis.
Then they said it was rheumatoid arthritis.
Then because my joints weren't deforming fast enough they said it was mixed connective tissue disease.
Or perhaps Sjogren's syndrome
Then they played with the idea it was multiple sclerosis or lupus or maybe even leukemia.
Except for the leukemia, there's really no definitive blood test for any of these things. For the rheumatoid arthritis, there's something called the rheumatoid factor, but that only occurs in 80% of cases. And any of these diseases would leave me crippled or dead. Woo-fucking-hoo.
So I did what any normal run-of-the-mill maladjusted 19 year old would do--I moved back in with my mom and had a nervous breakdown.
I grew up with the idea that medicine was a science. I suppose we all do from watching all those doctor shows. On the TV, you get sick, the doctor either fixes you or you die. Preferably quickly and painlessly.
It took me about two years to figure out that I was going to have to live like this. Damn. And better yet, medicine is not a for-sure thing. Most of these diseases are are diagnosed "clinically". This means you're going by the doctor's best educated guess based on a series of rule-outs and guide lines. You can go to nine doctors and get ten different diagnoses.
I have arthritic changes in my joints that are evident on xray. I have osteopenia. I have blood work that looks pretty normal most of the time except my white counts always kind of high and my platelets are often low and my hormones just look a little off. I've had most commonly ordered medical tests. The MRI's and upper and lower GI's and pvp's and more blood work and liver scans and gtt's and all the rest of it: All normal. Nothing to tell me why I felt like shit.
After a while one starts to wonder if one is just crazy. This is encouraged by the fact that the medical establishment and other people in one's life are willing to entertain the idea that one is just depressed or worse malingering. I stay the hell away from such people nowadays.
Flash forward to about 4 years ago. I'd spent alot of time learning how to cope with my symptoms. No treatments intended to cure what was now considered to be fibromyalgia, just strategies designed to help me live the best way possible. I had a job in doctor's office where summertime layoffs were common. Hot weather is bad for me symptom wise so I always volunteered for that. We lived in the South, so I just expected to be sick. I hid out in the air-conditioning and waited for the weather to turn. I had a relatively helpful doc who actually believed in fibromyalgia and prescribed the drugs that kept me on my feet.
My husband got offered a job in Vermont. I was thrilled! He took it and suddenly in the cool dry air I felt better than I had in years. I'm reminded of all those people in the 1800's who moved to Arizona 'cause the desert air was the only treatment for their TB.
After moving across country, I had to find a new doctor. I went to a couple of fibromyalgia websites and found the number of one near my new home. I'm pretty selective about docs, given the multiple baaaad experiences I've had.
This new guy passed all my criteria: Didn't keep me waiting, understood what I was talking about, wasn't threatened by a smart patient, spent time talking to me rather than whipping out the prescription pad and sending me on my way. I'd pretty much found Dr Right (hereafter referred to as DR).
In the first couple of visits, DR asked me about if I'd had my thyroid checked. Well, of course I had. Always it was "within normal limits". DR took what had to be a gallon of blood and tested not just my thyroid, but all my hormones. They were all again "within normal limits", but because DR believes in treating the patient rather than the blood tests, he thought he'd prescribe a low dose of thyroid hormone, because some of my symptoms looked an awful lot like hypothyriodism.
Two weeks after I started on the thyroid medication, I felt like a new woman! I had energy, my hand pain improved and I lost twelve pounds of water weight. I was amazed and also a little annoyed. Perhaps one of the last 25 doctors I'd seen could have tried that? But never mind, I felt better than I had since I was nineteen.
To be continued...
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4 comments:
wow! the thyroid meds helped! hmmm. and you moved to vermont and got away from the heat. i live in Los Angeles and its so hot! Last year was the worst time with the heat! but two years before that I fainted from the heat. I think.... Anyways
Lots of people with either fibro or Lyme have problems with heat I'm finding. The other problem is with sunlight. Seems that its not uncommon for people with Lyme disease to have exacerbations of their symptoms from exposure to sunlight.
Are you suffering from Lyme or Fibro?
I just want to share helpful information for all fibromyalgia sufferers.
Fibromyalgia is a condition where you feel chronic pain in certain parts of your body; it is a muscular pain especially around the joints. There can also be centralized pain felt in the spinal chord, brain, neck shoulders etc. People with fibromyalgia generally complain of pain in the joints, but it actually is the muscles and the tendons around it that cause the pain, it can be excruciating sometimes and can be a continuous throbbing pain. People suffering from Fibromyalgia also show symptoms of depression, sleeplessness, irritable bowel syndrome, stress and many others, which are caused due to the pain.
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We must know the symptoms of this illness. For us to know what would be the approach we will going to apply. Here's Signs and Symptoms of Fibromyalgia and steps to treat it naturally.
We must also be responsible and aware to the things to gain and cope up with this kind of illness. Eating nutritious food with regular exercise would be result to a better life. Here's Basic Tips in Coping Fibromyalgia.
If we say Fibromyalgia Diet, there is no specific recommended diet for fibromyalgia. But a healthy diet rich in vitamins and minerals can certainly help in coping with the illness. Magnesium rich vegetables are recommended for patient's suffering from fibromyalgia. Here's some information for you to help in Fibromyalgia Diet.
We must also think that vitamins are important for Fibromyalgia sufferers. This will give us additional energy and strength to kept a healthy living. But of course, you must be aware that not all vitamins are effective or directly gives you a good result. Find the best vitamins that would easily give a good response if your taking it. The best thing is your healed and keep your body healthy as possible. Here's The Benefit of Vitamins for us to know why vitamins are important for fibromyalgia sufferers.
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Really very useful post for me.........
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