View Full Version : Fighting it here...accepting it...
10-07-2006, 06:26 AM
I introduced some weeks ago, I am in a transition phase. I read this story about a lady who shared what it was like, having only so many spoons. I wish I didn't have to think about that. I know many of you are advanced, but this board may the only ones that truly understand besides my husband and my mom.
I am 32 years old, have had the pain since February, its actually better than it was from the months of feb to July. I have 3 children, ages 7, 5, and 1. The pain is in my hands and wrists all the time, and on bad days, it is my neck/shoulder, knees, feet, and sometimes hips. I am on plaquenil and prednasone. We are trying to wean of prednasone, I am down to 5 mg a day, wishing for my full 10 again, because I felt no pain anywhere then. This is now 2 mos of plaquenil.
I do have some questions. Did anyone give up pork and red meat? tomatoes/potatoes? sugar? white flour? caffeine? Did giving up these foods truly help?
Does Omega 3 complex help you?
I know there has been a lot of talk about sun light...how much is too much? I walk between offices 2-3 times a day...and I think I am just in denial...I can't give up going outside yet, I have three little ones who thrive outside when its nice out. Course now its wet and rainy out...
What about housework? do you determine how much you will get done in a day? I am working mom...so it never ends for me. Do you determine what you will get done and let go? If I overwork my hands I pay for it....I am a very hands on person, now I think I need to figure how to make some tasks easier, such as combing my daughters hair, baking, writing (I really need to figure that one out), and even typing.
I'll stop here, I hope this wasn't too long...but I finally got the nerve to ask all this and hope you can help.
10-07-2006, 09:16 AM
I am sorry you are continuing to struggle with so many symptoms. I am not sure I have any answers for you but I can speak from personal experience.
First of all, I have tried lots of changes in diet in an attempt to alleviate symptoms associated with pain, fatigue, etc. I know that there is lots of information out there about that and many of use have changed our diets. Several arthritic books I have read talk about elimination of "nightshade vegetables" like tomatoes, potatoes, etc. Over the years I personally have not found that eliminating them has make any difference. I seldom eat red meat but again I haven't noticed much difference. I do however notice that wheat and other grains cause me more problems as does sugar. I may be a little gluten intolerant so that may account to the problem I am having with wheat. I think that we are all different and you may need to experiment yourself with what to eliminate from your diet and what not to. What is known for sure that eating good quality food that is healthy and not junk food or prepackaged can only be better for your body.
Secondly, with regards to sunshine and light. Most people with lupus are photo-sensitive to lesser or greater degrees. Again, what one person can tolerate another may not be able to. In the early years I could tolerate much more sun than now as I can not tolerate any. Long gone are the days of sun tanning or going out without a hat or sun screen. I get fevers, rash, fatigue and the worst joint and muscle pain and flu like symptoms from the sun. I noticed that you felt better between Feb - July and then your symptoms got worse again. Part of that may have been your decreasing prednisone but is it possible that the sun of the summer months is bothering you more than your are aware?
You have a lot to deal with my dear, a full time job and three children. You really need to take care of yourself and find ways in your life to eliminate any unnecessary stress both personally and environmentally.
Wishing you better days ahead. Your friend......beautifulbeluga
10-07-2006, 01:18 PM
We sound very simalar, but I have only 2 kids. 8 & 4yrs old.
I have been on plaquinil for about 4 years. It took a few months to kick in but when it did it was worth the wait. I could get off the couch at night to put myself to bed for the first time in a long time. The doc's never did put me on prednasone, but it could have something to do with the fact that when they mentioned it I told them that I did not want it. When I was a kid I had asthma and when it got bad they would put me on it and I would balloon up. it took me forever to lose the weight.
As far as food goes, the only thing I have noticed is that i think sprouts (on salad) will cause a flare. The first few times I thought it was a fluke. I have a hard time remembering things, so most things I chalk up to being a fluke.
Being light senstive......yep.
I sat by my parents pool one day, this was a few years ago, later when I tried to go home my knees were so bad I could not get my left leg in the car. I sat in the driveway for about 20 minutes trying to find a way to get my leg in without bending it. I did evently get home.
I now just try to limit sun to about 2 hours and not all at the same time.
10-07-2006, 01:32 PM
Thanks for the responses. Feb to July were my worst months, the end of July I could barely walk, and was in tears and having never been on prednasone, it was a godsend, all the pain went fast and quickly, I had not felt that great in 6 months. Weaning off is a little difficult, but I know its better in the long run. The pain actually increased from May to July...perhaps the sun was the reason why, we spend a lot of time outdoors in the summer, I am going to have to be more careful. I know the prednasone isn't that great, but it is something I need right now, or I can't function at work or as a mom or wife for that matter. I am not ballooning up or anything like that yet...and hope I can keep it that way till the plaquenil kicks in. Thanks again for taking the time to respond. Hope you are having a nice weekend.
10-07-2006, 04:42 PM
Hi Melody -
I'm so sorry that you are having such a hard time. Like you, I have a hard time with my hands and wrists the most. It makes doing the simplist things impossible. I've learned to only do the things that are really necessary and just not be hard on myself about other things. I've given up on making beds and trying to keep all the toys put up and focus instead on laundry, dishes and cooking. I like cooking with a crock pot (if you use baby carrots and the little potatoes, you don't even have to cut up anything!) and throwing things in the oven. Anything that is easy.
As far as housework, I try to do one thing a day. Like sweep the floor. Or vacuum a room. Something little. I don't do anything extra on the bad days and have learned not to overdo it on the good ones or I'd pay for it later.
I have drastically changed my diet, slowly at first and more so the past few weeks. I cut out all the nightshade veggies, pork and red meat, coffee and tea, tomatoes, citrus, dairy and white rice and wheat at first. Now I'm doing all organic food. It's kinda expensive and an adjustment to learn to eat that way, but I've been feeling better the past few months than ever before. I've also been using Biotape (has silver in it to relieve pain) on my wrists. It has helped me to cut down on the prednisone. I'm pregnant, so I was really worried about being on high doses of it and had to get off of plaquinil and imuran altogether.
Anyway, sorry to ramble on. Good luck with everything and please contact me if you have any questions.
10-08-2006, 02:45 PM
Hi Melody! First let me extend a warm welcome to our group. You will find that everyone here is so supportive of each other and you can ask anything. There is always someone who can relate to you or if anything be sympathetic to what you are going through. We all have our cross to bear with this disease.
I know that there are some people who have given up eating red meats, the night shade veggies (tomatoes, potatoes, eggplant). I continue to eat those things. For me they do not bother me, although I have not tried to give them up either. I am a big sweets fan so there is no hope for me there trying to stop :lol:
And sunlight. The sun for most of us is not our friend. I remember when I was first diagnosed when I was little I didn't understand that my whole body could not be in the sun. I had a friend who wanted to lay in the sun so I said okay I just can't let my face get in the sun. So I had a small towel over my face and the rest of my body in the sun.. :oops: ...needless to say my mom came over (we were at my grandma's- who called my mom) and she chewed my bottom out. I payed for it a few days later with a flare. As the years went on I can tolerate the sun when in the car or walking short distances from the car to the store but I can not be out in it for prolonged time. That is a flare up for sure. I recommend wearing a hat if it is a long distance you have to walk.
And for housework. Only do the things that are absolutely necessary. Save your energy and do just a little at a time.
okay well I could write you a book so I better stop. Good luck ! :lol:
10-08-2006, 06:14 PM
Nice to have you here with us. Sorry that you are having a hard time right now. You are going through about the same things I am and we are just about the same age (I am 33). My doctor has not put me on anything but Plaquenil and Mobic (an anti-inflammatory). He keeps telling me to "hang in there" and it will get better in a month or two. I have been sick for about two years, diagnosed four months ago. I have been on medications since I got diangosed and I feel like every week I have a new symptom, despite the meds. I understand that it is frustrating. I am glad that you had such good results so quickly with the prednisone.
I also have two kids and work full time in an office as a paralegal. I wear soft hand/wrist braces and sometimes even gloves (because I also have Reynaud's) so that I can try to get as much work done as possible in a day. Some days are better than others. I have really had to learn, both at the office and at home, that some days I am just not going to get as much done as I want. I try to put the most important things up first (like feeding the kids and bathing) and that way the less important things, if they don't get done, the world doesn't end. And I have really learned to swallow my pride and ask for help. I have a wonderful neighbor and friend who helps out with the laundry and other things when I just can't do it. My husband is in the Navy and frequently out of town. Also, start thinking of fun ways that your older children can "help". I'll bet you'll be surprised.
I live in southern california, and the sun is a constant issue. My kids love to be outside, one was born here and one in Nevada, so they love the sun and the outdoors. I have gotten to the point where I always have an umbrella, a big hat and sunglasses accessible. If my kids want to go outside, I go, sit on a blanket with sunblock on, my sunglasses and hat and my umbrella up and close to me, so I am covered. I also limit my time to 30 or 45 minutes at the max. My kids have learned to adapt.
Okay, I'll stop rambling now. What part of Washington are you in? Your screen name is the name of the native american tribe that is right near my home town that I lived in from age 5 to 21.
Let me know if you want to chat more.
10-09-2006, 11:23 AM
I am sorry you are having such a hard time. Everybody else here has done a great job in answering a lot of your questions. Be very, very careful with sunlight. I wear sunscreen every single day (even sitting near a window can give me a reaction!)
As for housework...Back when both my husband and I were working, we hired a lady who came and cleaned the house (mopped, dusted, kitchens and bathrooms) for FIFTY dollars a week...what luxury! She came on Fridays and so we'd come home after a hard week's work to a spotless house! We can't do that anymore, so I have a different task designated for each day of the week. Mondays, mop and vacuum, Tuesdays dust, Wednesdays, laundry, Thursdays, kitchen, Fridays bathrooms. If I'm in flare, I ONLY do what MUST be done. My husband helps. We have a rule that we never leave a room empty handed...always something you can put back in its place. Teach your kids that rule. It keeps a lot of clutter down.
Good luck, and welcome to this special place.
10-13-2006, 11:25 AM
Just a reminder, a lot of us seem to have an increased sensitivity to chemicals. Try and limit your expose and open a window.
I also have two children 4 & 6 yrs old who love to be out doors. We are always conscious of the sun. I try and limit my exposure, wear hats, and sit in the shade mostly.