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View Full Version : Hi All, just been diagnosed with SLE and found your site



Expat74
04-09-2008, 03:24 AM
Hi I am a 34 year old male and just been diagnosed officially with lupus today, seems this is a great friendly site with lots of info and support. I am still to learn about this disease but i thought i'd share my story.
I began to experience very painful knee pain about 6 months ago which would leave me in pain and hobbling around, it would then switch to the other knee, sometimes subside and sometimes be really bad in both knees so I was limping, went to dr who thought it was viral so sent me to a reumatologist who also thought it viral. Any way pain came and went then started to get really bad and spread to the muscles in both legs and my arms and then I got the chronic tiredness / fatigue like i have never experienced, getting out of bed to work was a struggle when I got home i would have a sleep and be exhausted (i was always quite active), went back to a different gp who thought i had ross river disease (i am english living in Australia) which has similar symptoms to SLE, at this point i had fevers and sweats at nights. After numerous blood etc tests he sent me back to the reumatologist who I saw initially who sent me for further blood / organ tests
who has now diagnosed me officially with SLE. From a brief look round your site i feel lucky to have had a quick diagnosis and also that my symptoms do not seem as severe as many others, currently i feel better than I have done in months, with only more mild joint / muscle pain and the fevers have passed and the fatigue is not as bad as it was. In all this time i have only had 5 days off work when I was at my worst stage to date and a flu knocked me for 6.
I have just been prescribed Plaquenil & Mobic and i also have high blood pressure. i would love some advice on good exercise to help build up my strength (i was a keen swimmer before SLE got bad) and any dietary advice that could help, I am now forced to give up smoking which I guess is only good! Like you will all know it is a shock to be diagnosed and i am coming to terms with it and wish to not let it ruin my happy life and stay positive, any advice is appreciated, I will read all I can about it and will try to find some books for help. Is it accepted that keeping out the sun, including exposure to legs / arms is the way to go?
I also wondered if there were other men on this site? would be good to hear from them as it seems we are the minority!

best wishes to you all

Morpheus
04-09-2008, 03:48 AM
Hi expat welcome aboard.

Im a 26 y old male, and there are more of us :)

Glad you found us, hope you will find all the comfort and understanding I have experienced from the rest of the lupies here :)

Pearl
04-09-2008, 05:43 AM
I just wanted to offer a welcome. This forum is a wonderful place to find information, comfort and hope. You'll find more women on the forum primarily because the ratio of women to men diagnosed with lupus is approximately 9 to 1. Or something close to that. Don't let that stop you from participating here. Everyone is welcome and men with lupus have the same need to communicate and to learn from one another as do the women. I am glad to hear you are feeling better. Plaquenil gives tremendous relief to many who suffer from lupus. I hope you have success with it.

Good to have you here.

Jana

Oluwa
04-09-2008, 08:22 AM
HI Expat,

Welcome, welcome...indeed a wealth of info in the forums. We learn from each other. Living, coping, adjusting... how to engage with doctors. A whole stream of things...

Sun, for some it is a big factor and some it doesn't add anything to their symptoms. Always where SPF regardless. Does the sun make you feel ill in any sense. An over all yucky feeling, rashes? Me I get the yucko's and it aggravates my malar rash.

Diet...well my Rheuma instructed no sugar, no artificial sweeteners. Splenda was okay and no alfalfa sprouts. You could try an anti-inflammatory diet. High in Omega 3s. Like salmon. Olive oil..bright color fruits and vegetables. Flax seed, ground. Legumes. Avoid anything that comes in a colorful wrapper. I avoid preservatives, food dye. Basically eat clean...

Exercise...swimming hurts? Otherwise swimming is good. Takes the weight off the joints. There is yoga, pilates...many DVD's out there with small routines. Like 10 Minute Solutions.. Maybe an Elliptical Trainer.

Everyone has their own ritual, routine and hopefully they will pop in and share...

Mine regime is all over the place. As of late, no exercise has been apart of my daily life. But soon swimming, as our pool is reaching swim-able temperatures. I do stick to my diet regime..with the exception of a no-no. Chocolate Hersheys Bar...Plain.

Asak away...surf the thread. We all like to share..and please share anything you find..

Again welcome..hugs
Leep looking for your wellness,
Oluwa

lcasnyder
04-09-2008, 09:59 AM
Just want to extend a welcome. I was just diagnosed yesterday with SLE. I hope that you find lots of support and information. I sure have and have enjoyed everyone from the forum. I wish you the best.

scubagramplit
04-09-2008, 03:19 PM
A warm welcome Expat74
truly sorry about your dx, however as I looked at it at least now I know and can start some treatment. I have been on plaquinel and imuran for about 2 1/2 weeks, I thought I was starting to see a little improvement until this morning, back with the fatigue, still learning. The fatigue has been my major setback along with some pretty horrific headaches. I am starting to see when I am having a pretty good flare with the fatigue I feel my hips and right shoulder starting to ache pretty good. Today I started to feel some pain in the large knuckle of the index finger of my right hand, I though I would be lucky and not have to experience the joys of the arthritis effect however I do not think I am going to be so lucky. And yes, we are the minority, keep your chin up but out of the sunlight{ yes I know this is hard to do, I work on powerlines so all my work is above wich means I am always looking up, it is starting to take its tole}. Best of luck and God bless.

Saysusie
04-09-2008, 03:30 PM
Expat74;
I just wanted to add my welcome to those you've already received. Also, you have been given excellent advice about exercise etc., so I can't add anything better than what you've gotten :lol:
For me, swimming is my favorite exercise. But, since you were and avid swimmer, I will say that for now, just slow down. Take nice slow strokes through the water. You are no longer swimming to get a certain heart rate, to beat a certain time or to build certain muscles. You are now swimming to help your immune system, to help you body fight this disease and to help to combat the fatigue. Moving a bit slower through the water gets excellent results for what we are trying to do. If you love the water, I say try to get back in it, but just take it slow!!

Again......welcome
Peace and Blessings
Saysusie

sits_inthe_corner
04-09-2008, 05:03 PM
Welcome Expat74

48 yr old female. I'm in the process of being diagnosed. I've had symptoms since my teens, but I just side swiped a yr ago with arthritis in my feet, knees, rib cage and jaw (and a few other choice places as well)

The bigest mistake I made was babying myself. I stopped excersizing and coward in shock with my heating pads and ice packs.

While it's important to use both the heat and the ice, it's also important to move. Go jogging? NO but gentle walks on even ground, non weight bearing things like swimming or if you have a reclyning stationary bike on the lowest setting and just listen to your joints they'll tell you when to stop.

But in order to keep the joints from locking up...you have to move them. Just do it wisely.

Expat74
04-10-2008, 03:15 AM
Many thanks to all for the warm wishes, welcome and advice, it means alot to find a site like this where i can find support and information. i went for my first swim today in months, took it quite easy but managed 1/2 k, will take it easier (thanks for the tip). So sugar is seen as bad? lucky i never had much of a sweet tooth! :) Any other dietary no no's?
I feel avoidance of the sun will be hard living in Australia and I enjoy sitting on the beach and going for a dip but i guess strong suncream and covering up and a hat is the way.
I have not heard / read much about alcohol? Good wine is one of my favourite things, am I right in thinking just moderation and definitely no bingeing is the way to live?

Best wishes to everyone.

crushingpretty
04-10-2008, 06:30 PM
I think the cool thing about having lupus is that it forces you to do a lot of things you should be doing anyway. Eating right, listening to your body and the cues it gives you, exercising and keeping fit, wearing sunscreen etc.

I can't think of anything (meds aside) that people without lupus shouldn't do as well. I know that before my diagnosis most of those things were on my list of things to get around to. :)

With alcohol, I suppose everyone is different. But I tend to notice my face gets red most of the time. But not every time though. My docs haven't said anything about alcohol, and occasionally my nurses and dialysis family joke about how I need to get old enough to go out with them. ; )

But really, you really just have to pay attention to what makes YOUR body stress out, not just you mentally/emotionally, but what makes your actual physical being stress. And that's different for everyone.

If you're just starting out, I would try to stick with your regular routine (with a few deliberately healthy additions) and see what (if anything) makes your body wig out. but you've got to pay attention.

Good luck and I wish you the best. (All of you! <3)

Saysusie
04-11-2008, 10:47 AM
Expat;
With reference to diet, we are generally told to follow the diet recommended by the Heart Association. This basically means to eat a balanced diet limited in calories and fat (especially saturated and omega-6 polyunsaturated fatty acids), containing rich sources of vitamin E, vitamin A (beta carotene), selenium and calcium. Vitamin E, vitamin A, and selenium are antioxidants and may have anti-inflammatory properties in people with lupus. Some say that we should add fish oils (which contain omega-3 fatty acids), evening primrose oil, flaxseed, a plant herb called Tripterygium wilfordii, and supplements of a weak male hormone called dehydroepiandrosterone (DHEA), as they have anti-inflammatory properties.
We are warned to stay away from zinc, which is found in meat and shellfish, especially oysters, because they, theoretically enhance immune response. We should limit our fat intake to less than 30% of total calories, and may want to avoid substances rich in omega-6 fatty acids including safflower oil, sunflower oil, poppy seed oil, and corn oil, because these fats may exacerbate the disease, according to studies in rodents.
But the omega-3 fatty acids contained in the oils of several fish varieties, including mackerel, tuna, whitefish, and herring, may slow the disease and have an anti-inflammatory effect. Supplements of bone-building calcium, along with vitamin D, which helps the bones better absorb calcium, also may be beneficial to people with lupus because the steroids we have to take (like Prednisone) may result in osteoporosis. Other no-no's are alfala and legumes.

Peace and Blessings
Saysusie

TERIOD
04-12-2008, 12:59 PM
To EXPAT74

Your story about your legs is pretty much the same as mine, I went as far as to go back to college and get a degree thinking my legs were going bad, as it turns out severval years later and much pain later I was diagnosed with sle, I now use a cane and braces to walk (not so much that i need them for mobility but any ease i can give them prevents pain later in the day)
Ive heard grapeseed and gin are a treatment for lupus and i treat trying it with the gin part and when i drink enough i swear the the lupus is gone :lol: :lol: wine is an antioxidant and probably wouldnt hurt in moderation

swimming is probably the best exercise for lupus(no impact, good muscle workout)) and there are sunscreens or shirts you can wear to minimize the impact from the sun

there are a couple othe guys on here that can help you out or have already,, one is even from sidney

I am 45 days ciggarette free right now after smoking for many many years (by far the hardest thing to do is quit smoking)

Terry

sits_inthe_corner
04-12-2008, 01:32 PM
I have the occational glass of red wine. It's a guilty pleasure, I dont seem to suffer any from it. I might have 2 glasses a week.

sick n tired
04-13-2008, 12:13 AM
Hey Expat74,

I just wanted to add my voice of welcome to the others in the chorus.

This is a nice site to feel welcome and have some people who are there to listen .

Take care,

Karen

sits_inthe_corner
04-13-2008, 01:45 AM
WooHoo TERIOD

Good for you! I quit smoking two years ago. Not because I wanted to either....I did NOT want to. I liked smoking...enjoyed it. But I had to. So I quit cold turkey. I had tried all those patches and pills and stuff. Nothing worked. I'ld smoke with the patch on hahahahaha. And I really enjoyed the wild dreams you'd have with the patch. :D

:roll: what an idiot heehee.

It's not easy, so I'm proud of ya. Hope you keep stuborn with it. Why the heck should someone get your money for smokes which are bad for ya anyway.

Two yrs later I still get the od craving out of the blue. Actually I think I'm addicted to the craving now...I dont mind them and actually enjoy it hahahaha. Geesh I'm a sick little puppy.

Any way hugs congrats keep it going :)

Saysusie
04-13-2008, 10:02 AM
Teroid;
Congratulations of your years of being free from cigarettes! Som my friend, how are you feeling????

Saysusie

TERIOD
04-13-2008, 03:49 PM
Teroid;
Congratulations of your years of being free from cigarettes! Som my friend, how are you feeling????

Saysusie

not me!! only 52 days now,, i lost some time last week :lol: :lol: 52 days of pure hell on earth,,im tellin ya :mad: :mad: I think im going nicotine crazyyyyyyy

sick n tired
04-13-2008, 03:52 PM
Hi Teriod,

I am sorry to hear that you are nicotine crazy....I hope that the urges will get better in time....but at least you have gone 52 days!!!!

TERIOD
04-13-2008, 04:12 PM
Hi Teriod,

I am sorry to hear that you are nicotine crazy....I hope that the urges will get better in time....but at least you have gone 52 days!!!!

I will suceed and survive :D

sick n tired
04-13-2008, 04:16 PM
You have a great attitude and with that one you will succeed!!!!!! :) :) :)

sits_inthe_corner
04-13-2008, 04:21 PM
Teriod

I suck at math, having said that...if you make it past the three week mark you are laughing! Hang in there.

Deep breath, let it out slow. Stupid stinky smokes are not tougher than you are!

Once I made it past the one year mark I could finally let myself relax. I realize that all the key events that I had been through as a non smoker were behind me. I made it through xmas and summer vacation and parties and stressful times. Each one like was another notch in my belt. A personal victory.

You can do it, just get stuborn :)

Expat74
04-14-2008, 01:03 AM
thanks for the good wishes everyone, i started plaquenil today and am avoiding mobic unless i get bad bad pain days, I still think I have a milder lupus than many but it is in my mind that it could get worse at any time? And I worry about not being able to work if it did get really bad. I hope with the meds, lifestyle changes (stop smoking, good diet and regular exercise) i may be ok. Is it widely regarded that red meat should be eaten in moderation due to zinc content? Funnily enough i have been taking zinc tablets for a few months prior to diagnosis thinking something that boosts my immune system would do me good!!

sits_inthe_corner
05-10-2008, 11:38 AM
Expat74

Don't know if you're still out there or if you noticed the site was gone, but if you have a notification on this post you'll find out it's back :) hope you are well.