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JoGirl
11-12-2008, 07:04 PM
Hi - Diagnosed with Lupus during pregnancy of my 2nd child - now 2. Was hands off everything while pregnant and then reluctant to take any drugs - thought I'd do it with lifestyle (plus anti-imflammatory's plus panadol as required). Managed to survive incredibly intensive house altertaions that had me onsite managing with the kids (full time Mum) and working every night too... all came back to haunt me with a flare earlier this year - 6 weeks of PAIN!
Has been present with the odd glip since - typically joint pain and a feeling of fatigued limbs - mainly at night... aching. Lupus also affects my tendons. Had a red eye that turned out to be lupus too - but no discomfort and no long term effects. Then increased activity as of 6 weeks ago. Different symptoms - my left arm feeling like I had a rubber band tied around the top - fullness and aching with tingling in my hand. INitially thought it was how I was sleeping but it has become more everpresent and terribly painful at night (WHY do things get so much more painful at night!!??). Have just started plaquinel and WAITING for it to take effect.
Attended my first lupus seminar recently (Go Lupus Trust NZ!!!) - sleep, stress and AErobic exercise... the hardest things to manage with preschoolers.
I'd love to hear from anyone with any lifestyle advice re lupus, placquinil (how long until I start feeling results) and my symptoms in particular. Friends hear what I say re symptoms and then expet me to be "normal" - the constant presence of pain is hard to explain.
Jo

Saysusie
11-12-2008, 09:06 PM
Hi JoGirl;
I'm surprised that your doctors did not explain Plaquenil to you. While Plaquenil is one of the best tolerated drugs for the treatment of Lupus, it can take up to three (3) or more months before you begin to see the real benefits. However, once the Plaquenil starts to work, it does help with the fatigue and most of the skin issues present with Lupus. Most doctors will prescribe Prednisone with the Plaquenil so that patients can get quicker relief from their symptoms. It is generally hoped that, once the Plaquenil kicks in, the Prednisone can be tapered off. It might be beneficial for you to talk to your doctor about adding a treatment to your Plaquenil so that you can get some relief.
Lifestyle changes are imperative for us Lupus sufferers. We each have had to tailor our changes to our particular circumstances. There are many members here with small children who can probably give you better advice than I on how to get recuperative rest and regular exercise while managing a home and children. All that I can do is to stress that doing the two are very important. It was suggested by a member that we should make a list of those things that we want to accomplish in our day, and then cut that list in half. Always put aside some time to get some rest (perhaps you can nap when you put your children down for their naps). Do all that you can to avoid stress as it can literally kill us by causing flare-ups or worsening our symptoms.
Eat a healthy diet, try to eat only fresh foods and reduce (or eliminate) your intake of red meats. Avoid alfalfa sprouts as they are known to exacerbate some Lupus symptoms.
STAY OUT OF THE SUN!! If you must be in the sun, make sure that you cover your entire body with sunscreen with a minimum SPF of 35. Also, wear loose fitting clothing that covers your body, wear sunglasses and hats. Never over-exert yourself and, if you feel tired...stop and rest.

I am sure that others will be along with some excellent advice. I wish you the best of luck.

Peace and Blessings
Saysusie

KathyW1958
11-13-2008, 04:52 AM
Hi Jo,
Welcome to the site. I hope that you get to feeling better. Saysusie gave you some good advice. I hope to get to know you.

Hugs,
Kathy

YPT
11-13-2008, 06:10 AM
Hi. Looking back over my life, I actually had Lupus when I was a child but I was not diagnosed until I was about 37 years old. When my children were small, I remember laying around a lot and being in a lot of pain, but because everytime I went to the doctors, they would say that the tests were negative and nothing was wrong with me. I did everything a mother should have done in caring for her children, but looking back, it was hard. I remember being extremely tired and not feeling like doing anything but I had to because my then-husband was in the military so all of the child rearing was on me. Looking back, I wish I had been more aggressive in getting the doctors to look into what was wrong with me. What I would suggest right now for you is to take rests as often as you can. Resting does not make you a bad mum, but rather a smart mum. I am just now listening to my husband and saysusie and kathy to get the required rest the I need. I am beginning to understand how powerful rest can be although sometimes I still fall into doing more than I should and then suffering the consequences.
I hope your situation gets better soon. Pleased to meet you.
YPT

KathyW1958
11-13-2008, 02:25 PM
Hi YPT,
I also went through the experience of having Lupus since childhood, but did not get diagnosed until I was 36. I tried repeatedly going to the doctors only to be told time and time again that I was worrying and stressing needlessly and that there was nothing wrong with me. It was disgusting to say the least. My children were small and I did the best that I could with them and yes it was hard. I am glad now though that the doctors seem to be listening more to people as they gain more and more knowledge about this illness.

Hugs,
Kathy

lainy
11-14-2008, 03:48 AM
Hi !! Are you in NZ too? Would love to hear from you! What part of NZ are you?

JoGirl
11-21-2008, 01:08 PM
Sorry - poor PC connection and lack of time - but here i am...
I'm in Auckland and do feel very relieved (although it was more like shock at the time) to receive an early diagnosis. I'm someone who's energy goes up and down and generally gets disregarded so this flare has really brought about some tears in coming to accept that Lupus is interwoven into my life - not just in a container.
I did Calm Birth (using self hypnosis/relaxation) for my two births (yes the still did hurt!!). What was so good was using some of the calm birth relaxation scripts to create our own and then recording it on to tape (appropriate new age relaxation music in background)... it's 40 mins long - and pretty reliable in having me acheive a level of deep relaxatin - if not sleep (I've stopped trying to figure out which - I just don't remember any of it)... ineffective when child is being noisy in the next room in quiet time - or if there is too much going on and in my head. It was fantabulous in getting rest with Newborn as have never been someone able to just "have a quick nap" easily.
I'm not on anything with the pacquinil lowest dose am/pm - Anti-inflammatories am and pm - panadol during the day and slow release morphine tab at night - with sleeping tab support if I feel I need it. Has been prob 2 months of elevated activity and 2 weeks of flare.... sorry - to be continnued - kids need me - back soon...

JoGirl
11-21-2008, 02:01 PM
The inital WAHHHH! was a Friday night (post friends wedding) and the last two Friday days have been elevated pain too... feels like maybe a build up of the week.
I'm trying to get on the windtrainer (indoor bike) 3-4 times a week for 30 mins with my heart rate at 130 and also trying to use my tape maybe 2-3 time a week during afternoon quiet time.
Seemingly ridiculously I have JSUT started doing a LITTLE bit of work (like max 5 hours a week) - that is REALLY flexible about when - and it is made a real difference to my headspace - but does take time away...
If I knew that staying in bed all weekend would knock it on the head or exercising 30 mins EVERY day or... well you know - in the absence of that you just get on with trying to get on with life and making some choices.

Sleep - Aerobic Exercise -Stress - apparently the 3 big answers for us per recent NZ support group seminar with content out of the USA annual conference. Very good - focused on pain and fatigue -the hard to see side.

My hadn has the palm clearly inflammed and lose a bit of feeling in my fingers - when the inflammation looks worse the symptoms seem to feel worse - anyone had similar??
PS - I am in Auckland

sits_inthe_corner
11-21-2008, 02:44 PM
Hi JoGirl


Welcome to the site. :)

I've been on plaquenil for almost a year now. It takes many weeks to build up in your system before you will feel any benifit from it. I started it in December of last year and it was mid spring before I noticed that I wasn't in constant pain anymore and my swelling had subsided GREATLY.

I was just about to waddle back to my doctor and rip her a new backside when I realized that I was actually not waddling anymore :lol:

I could actually "step over" things. Dont get me wrong...it's not a fix all drug, but I would never want to go back to the way I was before. Every once in a while I'll have a flare (despite being on plaquenil). The flares do not last as long and they are not as sever.

Having said that.

VERY IMPORTANT>>>>Ask your doctor if you can take both pills just before bed with a single serving of yogart.

I was getting headaches and upset stomack and the runs :oops: and dizzy spells.

My family doctor is on plaquenil as well, she suggested I take it this way so I can sleep through the worst of it and wake up fresh in the morning.

For me it works like a charm. But please do not do this with out discussing it with your doctor.

Hope this helps

JoGirl
11-21-2008, 05:29 PM
In general my Lupus is in the background - a few aches and gets worse in the evening... I haven't had any bad side effects from it that I've really noticed but def will get the low down from the specialist mid Dec re your suggestion as also read that somewhere else.
Are there any specific things you do when in "flare" to help reduce the severity and duration??
I've only had one other and it lasted about 6 weeks... but feels like a baby one as managed with anti-inflammatories (and only at night) and panadol. This still aches with the anti-inflammatories am and pm and the morphine.
The Doctor is really good - but will be great to see the specialist and the minute you walk away you have questions... like still having pain when taking it - can I take another? etc... lifestyle use really

sits_inthe_corner
11-21-2008, 05:58 PM
I'm on a combination of plaquenil and arthrotec 75. Between the two I do pretty well.

During a flare I walk a fine line between not doing too much or too little.

You do have to keep moving or my joints lock up. But if I do too much a puff up like a blow fish.

I have a memory foam mattress, which I love and I got some polar fleece bed sheets. They are wonderful ... I find with the fall winter and spring my joints used to ache all night from the cold of the bed sheets, I just couldn't get warm.

I wear a wrap around sports need brace when I'm doing house work or driving my car or if I have to walk somewhere. It helps alot to ease things.

When I'm flaring...I haven't found anything special that makes it easier. I've noticed that my flares are not as bad once the plaquenil kicked in.

sick n tired
11-22-2008, 05:49 PM
Hey Jogirl,

We haven't met, but allow me to welcome you to the forum. This is a great support for us. Plaquenil took 3 months for me to feel a tiny bit relief and 6 months for me to really feel it. Perhaps you will feel it sooner.

Hey Ypt,

we haven't met, either, but hi...I had some of the same experiences as you. One of my problems happened as a child and that was when I started having brain seizures and terrible miagrains. For me, I didn't complain of the pain because my mother believed the docs and it felt like she thought I was faking it...of course I couldn't fake the seizures.

Raising the kids fell mostly on me, too...I was able to do it through shear will power. actually, I still have some teens, but no small children.