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Old 05-07-2007, 06:43 AM
 
Location: NoVa
18,432 posts, read 34,218,797 times
Reputation: 19814

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Hello... I have been dx with this for a few years now, and I am on Methotrexate and Plaquenil. I have also been on Asulfasalazine, but it didn't seem to work. I do have other health issues, which is why my Rheumatologis is trying not to go Biologic on me. She does have to keep upping my MTX though. My knuckles stay swollen and painful all the time, always w fatigue. Horrible. I had in the past told my dh about the meds and the effect they would have on me and going in the sun, and I guess he thought I was making it up or out of my mind.

Long story short: we went to a little fair if you will on Saturday and were there for about 2 hours. It was overcast, no sight of the sun. My face and neck felt like they were on fire! I told him about it and he says what do you want to do ...do you want to just go home?!?! harshly. So I said no, he was wiggin out and the kids were having fun. I guess my face wasn't red, but when we got home and further in to the evening my face neck and shoulders were red like I was a newborn out on the beach on a bright sunny day.. then he tells me I am breaking his heart with this health issue. I tried to explain everything that goes along with the problem, that its auto immune, and the side effects of the meds and all of the other things that come alon with it, I gave him info to read, he never did. What do I do?!?!?

Does anyone else have a spouse who just doesn't get it? Or, any ideas for me to get it through to him? Normally he listens to his.........mother
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Old 05-07-2007, 07:32 AM
 
8 posts, read 38,373 times
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I'm sorry you are having so many problems with your symptoms, side effects and the lack of empathy from your spouse.
I have a diagnosis of mixed connective tissue disease. That is just a formal name for the multiple elements of my autoimmune disease (first I was told lupus, then scleroderma, now mctd). I was diagnosed in 1999. My spouse was diagnosed with RA in December. He now knows what I have been dealing with. I now know what he has been dealing with. I'm not sure what has been harder, learning to deal with my own illness or adjusting to his. I don't think you can push him to understand what you are going through but you can make sure that you listen to your body, take precautions against things like sun (they now sell clothing with built-in sun protection) and joint damage, and continue to enjoy the abilities you have.
BTW, there have been recent studies showing green tea helps with RA and joint damage/pain. I'm not big into supplements but I figure this is something worth trying.
Hang in there!
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Old 05-07-2007, 01:20 PM
 
Location: Central Florida
1,408 posts, read 5,081,624 times
Reputation: 874
Cinderobyn...sounds like your husband should have been with you on some of your dr. visits so he could have heard it all. However, that wouldn't necessarily have made him the compassionate husband...remind him of the "in sickness and health" clause!

My neighbor suddenly became very ill last summer -- they thought it was Lyme disease at first. But with further testing found out it was RA. They started her on powerful meds, probably the same ones you mentioned and within a few months she was practically bedridden.

She started researching other treatments and found a doctor in another city that still treated RA the old fashioned way that was working back in the 50's. She figured at this point she had little to lose and all to gain. She was able to get in to see the dr., started on Tetracycline (an older antibiotic) and the difference in her is amazing after about 3-4 months. She continues to improve, looks great, no more hobbling around with a cane, occasionally has a flare-up after overdoing things. Right now she's only on the Tetracycline 2 times a week and is maintaining.

She was a school teacher but of course had to give that up when she was so sick and now probably will never go back to teaching because of the stress involved.

Maybe you can research this yourself and talk it over with a trusted physician. I hope you find something that will help...and that your husband will be supportive through such a tough time.
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Old 05-08-2007, 04:21 AM
 
Location: Somewhere.
10,481 posts, read 25,189,547 times
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Suggested reading "The China Study" by Thomas Campbell. It covers RA along with so many other ailments and diseases people have. It's what you are eating. It's no mystery.

Last edited by PinkString; 05-08-2007 at 04:22 AM.. Reason: typo
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Old 05-08-2007, 06:15 AM
 
Location: NoVa
18,432 posts, read 34,218,797 times
Reputation: 19814
Thank you for all of your input! And we are going to be moving and I will be starting all over with a new dr... will see how that goes. I don't know, dh sees me so fatigued after work and thinks I am being lazy, then sees the sunburn, but only after coming out of the sun, and he wanted me to tell him every aspect of the dz at that time right there in the car... LOL... hard to do. But, I did try.
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Old 06-24-2007, 09:58 PM
 
1 posts, read 4,425 times
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Default I feel your pain ( no pun intended)

I am going through the same thing with my spouse.and i see I am not the only one. at 25 years old I was diagnosed with sarcoidosis in 1995. In 2002 is was diagnosed with rheumatiod arthritis i scored 34 out of 35 on the ra factor test so needless to say i got it bad. It has started to turn the fingers on my right hand. i have the hand strength of a 70 year old man and aboout the same energy level. i currently maxed out on methotrexate ,400 mg's of celebrex daily, 200mg plaquenel daily, just to be able to function. I am in constant pain in my hands and flares that migrate and when they manifest i lose all function in that joint. I always feel tired, but my wife says i need to get of my fat lazy but and do something and its all in my head. She has been to the rheumatologist with me, when the doctor told both of us it was good i use to be real athletic, because it was no way i should be getting aroung as good as i was and still working, and that at the level
I was at I probably will not be working in ten years. I she must have stepped out
of the office on that part. I have gained weight and she told me that she would leave me if i gain any more weight. The really messed up part about the whole thing is I found out that I had sarcoidosis when I was admitted for double pneumonia and she was the ekg tech at the hospital I was admitted in.
Mabe it's just me I would not marry no one ill let alone marry them If I felt that
way. I have reminded her of our vows and all that does is tick her off. '
I am at my wits end on what to. I don't need this stress on top my other issues i have no control over. do anyone have any good advice on what I should do?
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Old 06-25-2007, 12:52 AM
 
Location: Colorado
1,394 posts, read 4,161,953 times
Reputation: 954
As I have stated before, I have RA and Fibromyaliga, my husband is the same way, if it is him it is a different story, for me I guess I am supposed to live with it.
I do as the doctors say and he can take it or leave it, if I can get things done I do, and then over work myself on good days and then pay for it later, so be careful, and don't over due it. I also get very red if I am out in the sun for to long, and get drained out. It is to bad somebody dosen't find a cure for some of this stuff. Take care, Yorkie
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Old 06-25-2007, 01:56 AM
 
Location: NoVa
18,432 posts, read 34,218,797 times
Reputation: 19814
I have come to terms with some things. My physical life has become well sudddenly........I have come to terms with a lot of my emotional health and it has gotten much better. I am feeling much better. No migraines, no RA flares, FM flares. Feeling well. I have conquered the demon, for now, and I will take it one day at a time from here on out.
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Old 06-26-2007, 04:05 AM
 
Location: Somewhere.
10,481 posts, read 25,189,547 times
Reputation: 9115
Quote:
Originally Posted by Yorkie_Mom View Post
As I have stated before, I have RA and Fibromyaliga, my husband is the same way, if it is him it is a different story, for me I guess I am supposed to live with it.
I do as the doctors say and he can take it or leave it, if I can get things done I do, and then over work myself on good days and then pay for it later, so be careful, and don't over due it. I also get very red if I am out in the sun for to long, and get drained out. It is to bad somebody dosen't find a cure for some of this stuff. Take care, Yorkie
There is a cure for Rheumatoid athritis and so many other ailments. It's called a strict vegetarian diet plan. Most people don't want to do that, and want an easier way out. But there isn't.
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Old 06-26-2007, 01:33 PM
 
Location: Vero Beach, Fl
2,976 posts, read 13,334,839 times
Reputation: 2265
PinkString - I haven't seen your posts before today...I believe. In any event, while there might be some who think your way of eating is a bit strict, let me chime in.

My husband was diagnosed with RA and I almost lost it (mentally) for reasons I won't go into. My husband was a huge meat eater - just don't let a cow near him kind of guy. We changed our way of eating 180 degrees. Now, he eats meat a couple times a month and only 100% hormone free, no antibiotics, etc. Yes, to fish and lots of vegies and fruits and smoothies. Either they misdiagnosed him, the tests were wrong, whatever - but he no longer has RA.

It is so important to watch what we put in our bodies. Our way of eating may not help your RA, but surely it's worth a try? Please keep us posted and good luck to you.
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