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antique
Banned
Reged: 09/01/03
Posts: 215
Loc: east coast
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I've noticed that a very large number of us on DB have autoimmune disorders ... fibromyalgia and rheumatoid arthritis ... many probably also have multiple schlerosis, hypothyroidism, irritable bowel syndrome and lupus in its various forms. From what I have been reading, it is not uncommon to have more than one of these types of diseases if you have any at all.
I am curious about how you other DB'ers deal with the pain and other symptoms of these diseases. I know a lot of us take pain meds, but which ones work best for what and what else do you do or take to make life better?
I am also curious how you finally got diagnosed with your disease(s). Did a dr run tests and figure it out? Did you do your own research and then go to the dr to get tested? Did you hear about it on Oprah? 
Can you function adequately at work or home? Are the people in your life understanding? judgmental? I know I'm being nosey but I just want to know about other peoples' experiences.
I suspect that I have systemic lupus. I suspected it many years ago and asked my dr about it. She ran a test and said that I didn't have it. I didn't pursue it further. But since then I got hypothyroidism, fibro, and arthritis. I get IBS off and on as well. Many of the symptoms of lupus overlap with the symptoms of these other diseases, but the weird skin lesions I get and the ulcers in my mouth really make me suspicious. I intend to have several of the tests run for it this time.
In case any of you want more info about lupus, I found a good website at http://www.uklupus.co.uk/
Do any of you have lupus?
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Greycie
Old Hand
Reged: 07/08/03
Posts: 461
Loc: Pacific NorthWest
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Hey antique,
There was a GREAT thread not too long ago that was similar to this one, though, it was not related specifically to autoimmune disorders. I believe it was titled "Where is your pain" or something very similar to that. I think often times, after reading so many posts from so many people, we're all curious to know who has what and all that jazz- perhaps just to know we're not alone or maybe just curiosity? Lol. In any event, I liked that post (can't remember if you were here then or not ). As for me, my pain is limited to my back- bulged discs in my lower spine and lordosis (misshapen spine in the cervical area- up by my neck- as most people's spines are somewhat "S" shaped- mine's shaped more like an "L"). Of course, that was my diagnosis 2 1/2 years ago following my MRI. It took an act of God to get the MRI ordered and only because my stepmom use to work with and is good friends with an Ortho Surgeon who she got me an appt. with and he ordered the tests. For years before, I was told by Drs. and Chiropractors that it was just muscular. I knew in my aching bones they had to be wrong- we know our own bodies and pain like nobody else does and it did NOT feel muscular. Still, regardless of what I'd tell them, they ignored it. Strange that it seems to take so much to get anything done, huh?
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"I may not agree with what you say, but I will defend to the death your right to say it." - Voltaire
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LostShopper
Enthusiast
Reged: 05/10/02
Posts: 205
Loc: Deep South
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Antique, just some food for thought. While I am not a doctor, I have done alot of reading about just this very thing. I will try to find the article in which I read that often symptoms such as these, as well as a suspicion of thyroidism or lupus, can actually be a condition known as autoimmune hepatitis. The skin rashes/lesions are a tip-off for that as well. If you haven't alredy, have them check your ALT/AST levels (liver enzymes). I may not be wording this well, but I have been through testing for months, for hypothyroidism, lupus, etc. It began with a mis-diagnosis (my first symptom other than the fatigue) of exzema. You might want to run that by your doc.
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Sky_Queen
Fly Girl
Reged: 12/03/02
Posts: 1962
Loc: Texas
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I have fibro, diagnosed by a rheumy doctor. My regular doctor said I looked too healthy to have fibro. I treat my own pain for that - the rheumy doctor wanted me to take Celebrex, Vioxx, Skelaxin, etc. but those don't work for me. I take hydro 10/500 for that. I also have IBS, not diagnosed through a colonoscopy but because of the "symptoms" I have. Just started some Zelnorm samples which seems to be working, plus adding fiber to my diet. Also, my regular doctor diagnosed me with Hoshimoto Thyroid, which I take daily supplements for.
As for your other questions - my husband is sympathetic to my problems, but he doesn't believe in self treatment through OP's, so I pretty much hide what I order and take from him. I try light exercise for the fibro, but don't really notice it does much good and it's hard to exercise when you're in pain all the time. I also take Prozac ER for my monthly visit (PMDD) which has worked well for me. Also, I take Xanax for anxiety issues and to help me sleep. So, I totally treat myself for the pain which so far is working just fine. Thank God for OP's!
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Greycie
Old Hand
Reged: 07/08/03
Posts: 461
Loc: Pacific NorthWest
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Legitimate,
My mother has Fibro. and while she says she believes my pain far surpasses hers (on account of the days I can't even stand up)- I know for me, when I work out, the pain seems to be so much less that it's tolerable. For my mother, when she worked out, even something as light as just walking, she was in so much pain not only during, but after, that sometimes, she'd be swollen and in pain for days to follow. Crazy how our bodies are so different and how, while exercise may be the cure for one, may be the nightmare of others.
Best of luck to you all. 
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"I may not agree with what you say, but I will defend to the death your right to say it." - Voltaire
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antique
Banned
Reged: 09/01/03
Posts: 215
Loc: east coast
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It really varies with me...sometimes exercise makes me feel better and other times it seems to drain what little energy I had. I can or can't stand to do it depending on what symptoms I'm feeling that day. My MIL has fibro, and she exercises everyday ... walking... and she swears by it. If she overdoes it though, it takes a while to recover. In the meantime she will still exercise. However, she is in the enviable position of having everything provided for her. If she overdoes it and finds herself feeling badly, the worse thing that happens is the house doesn't get cleaned that day.
I am so incredibly frustrated lately. It seems that I am in a period of lots of activity with whatever all is wrong with me. I'm miserable and exhausted but I have so much to do. I can't afford to have down time right now. I just started a new job and have already had to take sick time.
People (in general) are incredibly judgmental, and of course, I have always been really hard on myself. My husband is compassionate but there is only so much I can share with him or he'll get depressed. He has his own lala world that he lives in where everything will work out somehow. I am afraid that both our worlds are going to come crashing down on us. I am the primary (and right now the only) breadwinner of the family, and I feel my health slipping away. Depression and anxiety are pretty overwhelming at times too. I feel like I need the world to stop and give me a chance to get some of my problems under control. Instead I have a continual stream of deadlines to meet, work that requires intense concentration all day everyday, people to try to impress and be cheerful around, and all the while trying not to let people see me falling apart.
I am trying to find out what all is wrong with me and what I can do about it. I take notes on what people say here at the board and research it. I came across something about autoimmune hepatitis in my reading and what tests to diagnose it. I have a list of tests now to have run. I just need a good doctor and some quality time with that doctor ... not in & out in 10 mins. 
BTW, I would be very interested to know of any good info sources you know about. My response was really to all of you that responded to my posting. Thank you for responding. The moral support means a lot to me too. 
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antique
Banned
Reged: 09/01/03
Posts: 215
Loc: east coast
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Lostshopper, so did you get a positive diagnosis for the autoimmune hepatitis?
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antique
Banned
Reged: 09/01/03
Posts: 215
Loc: east coast
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Here's some info some of you may find interesting. It came from http://www.uklupus.co.uk/fact17.html
Are people with lupus more likely to get other problems where the immune system attacks the body?
The answer to this is yes. Anyone with one condition where the immune defence mechanism attacks the body (so-called autoimmunity) is prone to another one. We know this is the situation with all autoimmune diseases. For example, people with diabetes (where the body attacks its insulin making cells) are more likely than the general population to get rheumatoid arthritis or thyroid diseases.
In general, if a patient has lupus combined with another autoimmune disease, the lupus itself tends to be less severe. In the same way, the other autoimmune disease, which can occur without lupus, tends to be milder. Correspondingly, doctors can get away with less powerful treatment in these overlap or mixed connective tissue disorders.
What are the other problems that people with lupus are prone to?
One of the conditions that can occur along with lupus is Sjögren's syndrome. This can occur in about 1 in 5 patients with lupus. With this problem the immune system attacks the glands that produce fluids to lubricate different parts of the body. Therefore dry eyes and dry mouth can be a problem. The doctor can provide artificial tears or saliva to help with this. There are some special fruit pastilles that can be sucked to help the production of saliva. However, it is important that these are sugar-free as the lack of saliva increases the risk of tooth decay. There is a blood test for a specific antibody that goes with Sjögren's syndrome. Sometimes a tiny piece of tissue can be removed from the lower lip to detect the condition (a lip salivary gland biopsy).
Sjögren's syndrome can also cause dryness of the vagina. This can make sexual intercourse sore. There are lubricants available to help with this too.
A little under 1 in 10 patients with lupus suffer with another problem of autoimmunity. This is where the body attacks the thyroid gland that controls the body's metabolism. The thyroid gland can either become underactive or overactive. If the gland is overactive, it can cause sweating, anxiety, shaking, heart pounding and weight loss, if underactive the skin becomes dry, weight gain is a problem and you can slow down mentally. Sometimes the thyroid gland (which is found at the front of the neck) can become swollen. A thyroid problem is easily detected with a simple blood test. It is also quite easily treated.
In lupus, as discussed above, joint pain is a common problem but this pain is not associated with actual damage to the joint itself. Much less often, people with lupus can develop an arthritis where the joints are affected in the same way as is found in rheumatoid arthritis. Therefore lupus and rheumatoid arthritis can happen in the same person. In rheumatoid arthritis, there is swelling of the lining of the joints. This swollen lining is called the synovium. Normally it is very thin and stops the natural fluid lubrication of the joint from leaking out. However, when inflamed it becomes very swollen, red and angry. It can eat its way into the bones and cause damage to them. Doctors use tablets in this situation to reduce the swelling of the synovium. By doing this they hope to reduce or halt the damage that can happen. The choice of tablets for this when lupus overlaps with rheumatoid arthritis are very similar to those used in rheumatoid arthritis alone.
The muscles of the body can also become inflamed in lupus. Again this can happen in patients without lupus and the treatments are very similar. The muscles can become very painful and weak if this is a problem. There are special blood tests and muscle electrical tests used to look for damage to the muscles from inflammation. Sometimes a small piece of muscle needs to be removed to look for the problem under the microscope (muscle biopsy).
Another problem with the immune system that can occur with lupus is thickening of the skin which causes it to become light and hard -particularly over the fingers and face. This is called scleroderma and is very rare. People with this condition are very prone to Raynaud's. It can also cause the thickening of other tissues which can cause difficulty in swallowing and diarrhoea. There are simple treatments to help with the Raynauds, swallowing and diarrhoea but skin thickening is very difficult to treat and tends to be permanent. Patients with scleroderma without lupus are prone to scarring of the lung and involvement of the kidneys in the same way as is found in lupus itself.
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prettyday
Threadhead
Reged: 02/09/03
Posts: 924
Loc: Coastal Sage Scrub
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to you, Antique for not giving up and continuing to take notice of fellow posters who share your symptoms. I do the same thing. I bookmark when a member shares a symptom or experience that is eerily akin to my own. I maintain that there is a common thread here; well, okay, I know that's obvious. But for each of the chronic pain and depression, anxiety, insomnia cases on here, I just know that there is a common denominator.
What is it?!? I think I will repeat myself. With the general graying of the American population, prevention will not just be a nice idea, it will become a necessity. I am hoping that this will push the 'take your drugs; they are under patent' motive away, and we will see some real clues and solutions.
You probably know about this site already, but if you don't, go wander thru www.remedyfind.com for a while. The patient comments are what I am interested in.
That feeling of wanting the whole world to freeze while you catch up...I could not have stated it more concisely.
And the short dr visits where one begins to rattle out desperately, so as to fit all their concerns into their time bubble; only to watch the shutters come down on the dr attention after 4 min., it's dreadful. I think a lot of doctors feel the same way. Something will have to give soon; I just hope it is in our favor!
Good luck; but you are working with better things than luck,
Prettyday 
I believe with all my heart that the researchers who are looking to find this link are as anxious as we are.
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First they ignore you, then they laugh at you, then they fight you, then you win.
- Mahatma Gandhi
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LostShopper
Enthusiast
Reged: 05/10/02
Posts: 205
Loc: Deep South
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Antique, Autoimmune Hepatitis often goes hand-in-hand with Sjogren's syndrome, Graves' disease, and thyroidisosis. We've done the blood tests for the liver enzymes and the autoantibodies, all that is left for confirmation is the liver biopsy. This is being sceduled as we speak. Fatigue, joint pain, weight loss, as well as what many mistake for IBS are some of the symptoms of Autoimmune Hep. Stay on them. You, like me, know when something is wrong. I lucked out in finally finding a doc that realized that I had a brain in my head and the ability to research symptoms and really listened.
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