Hi, my name is Robyn and I’m a new member and newly diagnosed with Lupus. I am about to enter a research study for a new medication (don’t remember the name) and I’m worried I will be put in the control group. I am on Plaquenil. My main problem is pain in my joints and weakness and pain in my arms and legs. With my pain meds, I settle at around a 3-4 on the pain scale which is tolerable considering that without medicine, I’m around 7 most days and can be way worse at night. I was referred to the pain specialist but he was little help and said the rheumatologist is the guy that can help me. I’ve been on pain meds, Norco, for about a year; I’m a compliant patient and take responsibly, but understandably, the doctors constantly remind me I’ll be taken off of them soon. I’ve tried to see if I could get a longer acting med but they don’t like that idea either. The argument is a good one- and they say it nicely- I’ll have chronic pain forever, so I have to learn to deal with it. I’m fine with trying anything but I can’t imagine having to ‘deal’ with this pain if the new medicine doesn’t help.
Does anyone have other ideas to help reduce my pain I can try? Rx, homeopathic methods, whatever ideas you’ve tried before. I will be starting with a pain therapist soon and I’ve tried breathing exercises and I try to walk for exercise. I’m starting a new anti inflammatory diet. I’m very nervous around doctors and it’s very hard for me to explain myself to them. I’m sure many of you have had that experience. I’ve been reading many discussions on this board and I’m grateful to have found support. Thank you!
Welcome to the "Life with Lupus" group! I know you will find lots of support here; you won't feel alone, and you will always have a sounding board for your specific issues.
If you don't mind me asking, as you are a newly diagnosed lupus patient, why did you chose to go into this research study? Is it an altruistic action to help others in the future? Does the study pay for all your appointments, tests and meds? Is your doctor running this particular study?
The pain therapist should help you---I wish you could see him/her before beginning the study. The argument about "learning to deal with chronic pain forever" falls flat in my ears. I don't think it is unrealistic to attempt to avoid chronic pain when you can. Since doctors make you nervous, you would likely benefit from keeping a journal with your questions and answers. If you can have a friend who can go with you this might help. They can help you journal AND remember what you heard.
Keep in mind, I am NOT a medical professional, just a person who has been dealing with lupus for (what seems like) a long time. I am glad you are a part of our group, and wish you all the best, plus look forward to seeing your posts here!
Hi Ann and Catwoman! Thx for your replies. I am going to research more on the mindfulness techniques. In answer to the questions about the study. My dr is doing the study (he is new dr for me) and it will be free for all tests and meds. All participants will for sure get the medicine for one year after the study for free. The problem is if I get in the control group, I’m not sure how I’ll cope with the pain, since my body seems so out of control right now. I haven’t been able to pin down what triggers my flares, if it’s anything specific. Do you know if flares are always caused by something (sun,stress) or can it just be whenever? That’s something the doctors don’t know when I ask. I am considering taking my mom with me because she tends to be more assertive with doctors. I just wish they would concentrate more on figuring out how to help me rather than always threatening to take away things that help me. Although I realize they have to protect themselves liability wise. Thank you!
I follow Ann's advice..... and exercise is so important for me and my pain. The less exercise I get, the more pain I experience. Massage is very therapeutic if you have the financial help for it, I also have fibro and had a free massage at the Home and Garden show, and it was uplifting. My neck pain was relieved for at least a week. When I'm financially able, I want to consider a regular routine. And water therapy is also relaxing for me, and helps my sleep.
Robyn,
I don’t agree with your doctor at all about the pain medication. I have been taking norco for years and if I don’t need it I don’t take it. Many people with chronic pain are able to take it without becoming addicted to it. One thing to remember when you go to a doctor, you are paying him to provide a service, without you and other patients he would not be a doctor. One of my favorite doctors was one who would tell me I’m not sure what to do but I will do research and see what else is available. I could respect him because he didn’t try to play “god”. I’ve been battling lupus etc… since I was 7 or 8 years old so my respect for doctors is somewhat rare…lol My father is also a doctor so I know they’re human beings. Anytime you get nervous around your doc just remember they are there to help you and they are being paid to do so. You wouldn’t pay full price for half of a meal so why would you accept less than stellar care from your doc? I’m sorry you had to join our group but happy you found us.
Gentle hugs, Annemarie
Robyn hi!, well for starters we are all are happy that you are here among us Living with LUPUS, i've never heard of such a thing taking you off the med . because it is helping you? maybe i miss read , but i have been on Plaquenil for soon be 3 years come Feb.7th and this is a med that i started with the same doctor - he /and the team of nurses are great would not change them , but back to you -smile Did the doctor say why? Hey babe i don't know how long you have been woith this doc , but you GOT TO SPEAK UP FOR YOURSELF !!! They will say and do anything when they see that you don't ask questions , or have written down to ask them about when you are at home , come on now you got to get the BACK BONE , and make them work for the money that they are getting paid to do for their knowledge from years in schools.... Beverly L.