View Full Version : checking in... so over this !!! venting

12-12-2007, 09:03 PM
So, I joined the site a few mths ago and I have been so busy with work and school and blah blah... Anyway.. I'm having one of those days .. I guess a bad week, can't sleep in so much pain. Live in FT Lauderdale and it's hot and it's DEC... I get so frustrated I just want to cry... not sure what to do sometimes. I don't talk about this with fam or boyfriend.. Tried talking about this with a shrink - yes a shrink ... I guess that is helping but who wants to spend an hour listening to someone complain about how they are always in pain, would you? Anyway I guess I needed to vent ...

Question- is it normal to feel knumbness in limbs?
Plaqenial- any advice on it - my doc gave me script about a mth ago- afraid to start taking it.. I know that sounds nuts but I don't want to make things worse then what they are already.

Also - does anyone have any experience with relaxation techs - does that work for some regarding pain manangement >?

Thanks for the advice


12-13-2007, 02:56 PM
Part of your pain, stiffness and fatigue could be eased if you took your Plaquenil. Plaquenil is one of the safest drugs used to treat Lupus and it is very difficult to make things worse by taking it. It may take between 8 to 12 weeks for the disease to respond to Plaquenil and you've already put yourself behind by not taking it.
Plaquenil is a Hydroxychloroquine which is one of the better tolerated anti-rheumatic drugs. However, as with all medications, there is a potential for side effects to occur. But, most of these side effects are not serious, so there is no need for you not to take it or for you stop the treatment if side effects occur.
Plaquenil has beneficial effects on 3 major aspects of lupus; skin rashes, aches & pains and fatigue. It has also been found to help in a number of other features of the disease. As well as helping the skin itself, it is often helpful in treating hair loss in lupus. It helps the muscle & joint pains, (though in cases where these are severe, doctors may also prescribe prednisone to be taken along with Plaquenil). One of the most successful uses is in fatigue, many patients showing improvement after several weeks’ treatment.
My suggestion....start taking your medications. If we ever hope to manage our disease, one of the important things that we have to do is to take our medications as prescribed. If you have questions about your medications, you should learn all about them, their uses, their side-effects, what they are prescribed for, and what the expected results should be. One way to ensure that your Lupus might worsen is to not take your medications. Please do not take such chances with your health.
Treatment of Lupus is primarily designed to avoid flare-ups and to avoid and/or reverse damage to internal organs. Lupus does not always go away on its own (remission), we take medications, eat healthy, exercise, and make lifestyle changes to assist it in going away or at least becoming manageable.
Sorry for the lecture, but I feel that it is very important that we become knowledgeable about our treatments and medications and that we take them as prescribed. This is part of being proactive in our health care and I advocate that very strongly!

Peace and Blessings

12-15-2007, 09:07 PM
Hi there! I"m glad you've decided to come here with support. Counseling and family/friends can be helpful, but there is nothing like people who really understand. And we've all had times when this disease has gotten us down or confused.

I really agree with Saysusie about taking the meds that are prescribed. If you are feeling uncomfortable, be sure to know why they've been prescribed and get a second opinion, if you feel it's necessary. We all have to be our own healthcare advocate. Then, you can focus on stress reduction techniques and taking care of yourself. This is really important in managing flares. I think there are lots of options that help people, and some things work better for some people than others. For me, yoga and acupuncture really help with aches and pains, stress, and anxiety. Taking naps and moderating my activity helps with the fatigue (as much as possible anyway), and doing nice things for myself - the occasional pedicure or massage, well, it's just nice and uplifts me when I need it!

I hope things get better for you. I'm wishing you the best!

12-19-2007, 08:17 PM
Thank you both so much. Not a lecture I know I know .. Your both right -I started taking meds and I will give it a chance. Thanks for being so supportive ... all of your words mean alot ''

VW :)

12-21-2007, 08:46 AM
I am so happy to hear that you are taking your meds. Please come to us if you have any questions about them or if you just need support. We are here for you!

Peace and Blessings