Hi Lisa!

I completely understand, as we all do.......it's very very frustrating. The alternative medications work yes, but it requires many many many pills. Did I mention many? Geez, it's a lot, so it's not great for everyone. Diet....

People are nuts, you know? They just don't get it. I'll have to write a blog about this one, so I appreciate the inspiration. Diet certainly helps if you eat anti-inflammatory foods....but on the other hand, it only helps a little bit. I suppose if someone had very few symptoms, Diet could do a lot for them, but what people don't understand is that RA is attacking our entire body. No amount of diet or positive thinking is going to tackle this kind of auto immune disease. That's why we have to take the big guns...the scary medicines, or we have to go the alternative route but take enormous amounts of supplements. Neither of them are pleasant, to say the least.

Here is a list of autoimmune diseases:
http://en.wikipedia.org/wiki/Autoimmune_disease

The next time someone tells you something about diet, respond creatively. Say, "I don't have Celiac disease, I have Rheumatoid Arthritis."
Then ask them if they, or someone they know has hypothyroidism. Chances are they probably know someone. Ask them if they suggested diet or positive thinking to that person. Then say, "Hypothyroidism is a disease where the body attacks one gland, I have Rheumatoid Arthritis, and it attacks my entire body."
If they still don't get it, mention that Multiple Sclerosis is very similar to Rheumatoid Arthritis in a variety of ways, and so is of course Lupus. Do they think that diet would cure all diseases? Ask them, "What is it about Rheumatoid Arthritis that makes you feel diet would cure it?" Tell them that ALS, also known as Lou Gherig's disease is also an autoimmune disease, where people live approx. no more than 4 years....there are acceptions of course. (My uncle died of this) Mention as well that Parkinson's is an autoimmune disease....don't you think Michael J. Fox would have cured his disease by now if diet is all that it took?

Lisa, I'm sero-negative too....it means virtually diddly squat. It doesn't determine the pain or swelling. Your sed rates and CRP levels are all you should need for "proof".

Oh and another good autoimmune disease to mention, that people understand is Endometriosis. Do they recommend diet for that one too? The problem here is, they are just uneducated. Give people information, that's the best you can do.

Before Rheumatoid Arthritis, I got a skin disease on my shins when I was 19. No one ever mentioned diet to me. I did however get questions, like, "Did you play soccer?, " or , "How did you get those burns?". People would look at me with kind of a disgusted look when I'd tell them it's a skin disease, as if they could catch it. At first I wouldn't wear skirts or shorts, but eventually I got over it and now when people ask, I tell them what it is, matter of factly.

Later I got hypothyroidism. Again, no one mentioned diet. Sure enough though, years later when I got RA people had all sorts of "cures" for me. It was very upsetting, and you're right, you don't have the energy to handle the kind of stress people cause by saying these things.

Educate people and try and learn to curb your reaction. Realize they're just uneducated and need more information. Arm yourself with knowledge and surround yourself with intelligent, positive people. Family of course is tough because it's hard to get it through their heads, but I feel for you.

We're all in your corner Lisa!
Gentle hugs,
-Sarah

How many times have you been told to avoid nightshade vegetables....arrggghhhh!

And avoid red meat....... I'm a vegetarian for heavens sake. DUH.

And one more thing:

For the toddlers that get RA, what do these people with their great suggestions recommend?

Amen!
I truly believe people are trying to be helpful, but if I've heard it once I've heard it a thousand times.

At first my husband thought anti-inflammatory diet would take care of everything. He nearly drove me crazy. So my diet is based in anti-inflammatory foods and I still have this crazy disease. I think he "gets it" now.

We're with you. Vent on!

LOL I know exactly how you feel. I've had RA so long now people have FINALLY quit trying to give me 'cures'. I know they are only trying to be helpful but it gets old after a while.

Linda

My husband soaked raisins for me, and made me eat them. Nasty!! I am sure all of you have heard that tale about the raisin cure. It doesn't work by the way!! At least he tried, and has never tried to tell me how to get rid of it, or what did I do to get it. I look at my hands and wonder where the nice hands went!! Now they are dry, wrinkled and knotty!! Oh well at least i still have my hands, right??

When I was first diagnosed, I told my women lawyers group since I didn't know at at the time whether I would need a bailout on my cases or not.

One of the group- Ms mediation, sensitive, ordinarily supportive person told me she had an uncle who died from RA. When I checked with my rheumy, I went back to her and told her that her uncle may have wanted to die from RA but didn't.

We've worked it out since and she now gets it.

Lynne

Well, the plain ol' truth is, nobody knows what causes RA. They have theories, and speculation. In my case it seems to run in the family (2 other cousins have it and possibly 2 grandparents had it).

I think the issue is as another post implies. Having the term Arthritis confuses people into thinking it's the same or similar to OA. It's a matter of explaining this is more similar to Lupus than anything..that seems to give folks a better understanding in my experience.

Marc's Mom is constantly offering supplements and cures that work on her OA, and I have to keep reminding her that I have RA...eh...I think she's trying to help, so to me that's no big deal.

Here's a funny story I forgot about. My husband was told it would help if I drank grape juice with a couple of tablespoons of pectin in it. These were the days when I was having 12 hr. pain cycles so extreme it took me 1/2 hr. to be able to stand up and another 15 minutes to get to the bathroom which is 2 rooms over first thing in the AM.
So after my hot shower my husband got me back to my chair, wrapped me in all my microwave contraptions, fed me my pudding, put my pills in my mouth, made me drink my grape juice and pectin and left to do some errands. WELL! I got such a belly ache from it I needed the toilet NOW! Where there is a will there's a way and somehow I moved a heck of a lot faster and was able to lower myself on the toilet before I pooped myself! That was the end of that concoction for me!

Hi Everyone!

I used to have a huge problem with this. My mom would get advice from every person she knew. She made me take liquid minerals such as silver, gold, vitamins, etc. They were so disgusting I could barely get them down...I had to completely pysch myself up so I didn't puke they were so gross. At first I just lied and told her I took them but then I told her the truth...I thought she might be disappointed in me.

Then my roommates Mom went to this bizzare speaker and came back and said that all antibiotics and fungus were bad for you and were also the cause of RA. She said I needed to quit eating things like mushrooms and quit taking antibiotics. At the time I was on minocycline (an antibiotic) for RA treatment. I was in so much pain, so fatigued, I remember I read through the literature and just cried and cried. I thought, "Well my doctor put me on this, and if all of the literature about it is right, then I'm making myself like this!?" I just didn't have the emotional strength to even want to have to deal with crap like that.

When I was first diagnosed, I was outside in the fall for a family get-together and I remember that my grandma and aunt tried to force me to go inside because "it was too cold, damp for me to be outside." I was like, are you kidding, I have a coat and gloves on and I'm not cold...stop treating me like a baby!

Now if people tell me their crackpot ideas, I just tell them that my doctor and I have a plan and until they go to medical school, I don't really want to take advice from them.

It's just like dieting...if there were an easy, quick fix or cure for weight loss, we would all know about it and be doing it but no such thing exists.

I know for sure, but the same probably holds true for other family and friends, but the reason my mom would make me try all of these weird rememdies was because she loves me. She told me that she prays for me everyday and especially at church; she said she wouldn't wish RA on anyone (her dad has RA also). Made me feel bad for her. I think somestimes we get so wrapped up in ourselves (and rightly so, it's hard not to) that we forget how it affects our loved ones. My mom also tells me that I was her healthiest child and now look, I'm her sickest; I think it really terrifies her. I've been doing great but I think she wonders how long before it comes back and I'm not in remission and what will it really do to me. Sorry for rambly, but when I saw this post it just really hit home.

Best of luck,~Kris

To answer the topic question NO RA is not our fault. We didn't do a thing to cause this horrible disease.

Linda

Hi Lisa,
I think I have finally settled this in my mind and heart. Almost 2 years after diagnosis. We don't know anyone in our family with RA. My mom says I am probably starting it but I don't know my dads family well. I hate the idea of possibly giving it to my children and pray against that.

There is a guy in my university who says he can cure me...but I probably wouldn't want to do what is needed, it'd be hard. I just say "yeah, to hard for me". He lives on supplements and herbs. Believes in healthy living. NOT that I don't. I do, but certainly have eaten potatoe chips and ice cream and diet pop. Those are very bad foods and wouldn't be allowed to eat those while cleansing my body. So, I'll go on living my way, sometimes wondering if I could handle the "diet" he thinks he could put me on and then realize that I'm sensible and going to be all right.
HUGS.

Well here is one for you on diet.I am from Germany originally and before coming here(in 1973) I ate pretty healthy, because my Mother would go to the store and just buy the food for that day, all fresh, no preservatives of any kind that was not allowed according to the German FDA. We also couldn't afford to eat alot of meat,but on Sunday's we always had Chicken. So, after reading a great deal and studying nutrition when I cam here, I compared the 2 countries and learned that we in America eat an awful lot of Omega 6 compared to Omega 3, according to the Arthritis Magazine and that can start the inflammation process which eventually can play out into an autoinmmune disease such as RA, MS Lupus, Diabetes,etc... but the there has not been alot of studies done on the truth of that.All I'm saying is that if we just eliminate certain proccessed foods and exlude all Hydrogenated corn(which is high in Omega 6) this and corn that maybe it would help a little with getting flares. I just got over mine 2 days ago after I've been on that diet for a little over one week, so it doesn't help alot but at the same time I've lost 5# and do feel better with more energy. By the way the Germans have adapted to our diet now as well and are getting just as sick as we are. Ironic.
When it comes to people and RA, they just don't know. I have tried to explain to an OA sufferer, what the difference is, but they don't get it. There comment is always, oh but you look so healthy. I don't see how you got such a nasty disease. I still haven't completely accepted it yet either and I know I am still somewhat in denial, but I am getting closer to it especially after having these nasty flares. Thanks god for Prednisone.

Someone in my office wanted to introduce to me to a lady who had been 'cured' of RA. I was very hesitant because as far as I know there is not cure. People may be well meaning but I can understand the frustration.
Do you know a friend I have known since childhood asked me last week ..'So, how did you get RA?' That upset me a bit -as if I know.