Hi Shannon, and welcome to KA.
1. Will the cold/rain/humidity make me feel worse?
It might. It might not. It depends on the person. I find that cold dampness hurts like hell, but warm humidity makes me feel better. Others have a different experience. 2. Do you hurt all the time, and then additionally have days that "flare" much worse, or do you have some days that hurt and some days that don't? (i bet that is a different for every person question)
You're right, it is different for every person. I haven't had a fully pain free day in almost 15 years (even tho I'm on a biologic). With me, it's degrees of pain.3. Does anyone here take Simponi injections? Do they sting? My DH takes humira for Chron's and they hurt like a B according to him. I give him the injections so ..ya. ow.
My sweetie and I are both on Enbrel. The only time our injections sting is if we haven't left the med out long enough for it to come to room temperature, or if we hit muscle instead of fat. Then we both go through the roof!4. What the heck is methotextrate (sp?) Some of the TFN brochures read something like "when taken with methotextrate" Does that mean the M is in the injection or is that something else I have to take in addition to the injection?
Methotrexate is an old chemo-therapy med that has been found to be very effective in people with inflammatory arthritis (Rheumatoid, AS) in much lower doses than when given for chemo. In people with Rheumatoid Arthritis, it has been found that the often respond better to a biologic med if they are also taking Methrotrexate (MTX). In people with AS, it's a crap shoot and the jury is still out as to whether MTX will give better results combined with a biologic.5. I asked my doc for exercise recommendations and he refused to say anything. I mean really, he said, I don't give exercise recommendations, find something you like to do and doesn't hurt you and do it. Sooooo helpful. So does anyone have anything SPECIFIC that you do? I like to walk, but it hurts my feet a good deal, even with foot inserts. I can swim in the summer, but it's Sept now so....thoughts?
You'll find that most rheumatologists are the same in this; alhtough, he/she could have at least referred you for physio. Swimming is extremely good for us, but I would recommend a warm water pool. Also, your local chapter of The Arthritis Foundation will have some good suggestions for exercise and may be able to tell you where you can find a warm water pool in your area. Tai Chi and Yoga are very good for us. I recommend Pilates, which has been found to be extremely good for people with AS in a study I just found out about. But if you do pilates, find a class with a teacher who is willing to work with you and learn about AS, as there are some exercises we should not do. 6. My doc didn't say one word about diet, other than to tell me to not take calcium pills, but eat my calcium from regular food. But I see on here tons of stuff on low carb. Is there any research that backs that up or is it just well we tried it and it worked for me so you should try it too. (which is fine, I just wondered)
OK, if you can find food that will give you 2,000+mg of calcium a day, along with magnesium and vitamin D, go for it. However, I rather doubt that is physically possible. We need more calcium that other folk because our bodies abuse it. Magnesium and Vitamin D are essential when taking calcium because on helps your body absorb the calcium efficiently and the other helps your body utilize it properly.
Very few doctors will talk about diet at this point. They don't seem to think it makes much difference. Please check out the No Starch Diet forums here at KA for more information. Some folk find that they get relief only by eliminating all starches; others find that following a low or restricted starch diet is helpful; others find that it makes no difference whatsoever. Diet, like every other treatment out there, is personal and what works for one of us will not necessarily work for another. The other thing you might do is see if your local chapter of The Arthritis Foundation is doing a class called The Arthritis Self-Help Program (in Canada it's the Arthritis Self-Management Program through The Arthritis Society). This is a six week program, two hours of class time a week, that has helped thousands of people living with arthritis take control of their lives again. It was designed at Stanford University to be taught by people living with arthritis to people living with arthritis (and to their family members if they want a better understand of what you are living with and what they can do to help). I took it in 2004 and it really helped me turn things around. I liked it so much that I became a Leader of the program six months later so that I could help other people like me learn to live with their arthritis.
And congratulations Mom!!! There are a ton of folk here who are parents to younguns. You're in good company!
Hugs,
