Hello, my name is Julie and im 20 years old; recently diagnosed with lupus last week.
This is a huge life changer for me and its a tad hard for me to cope.
How do you deal with the muscle aches in the morning?
What do you do once a flare is triggered? How do I handle the situation?
But, I hope to get some help and support. Thank you
Hello Julie,
I am sorry to hear it's hit you so early in life beforwe it's even started...issues happened with me at 18.
It's hard for us all but i can understand your concern only being 20 we have several member's still trying to find out a definite diagnosis and Tiffany is one of them.
The way of coping which i've truly found is by not going about daily doing things at your usual pace as your won't help symptoms your getting...daily life as to be paced slower besides resting in between what your doing, alot of member's have found this helps a great deal besides having the large family of LWL to talk with, see if there's any groups who you can meet up with in your area or there's usually councilling given for it but you'll find so much out concerning the threads added and advice given.
Those muscle aches your getting are spasm pains i have them everyday, actually having my legs rubbed by my hubby helps plus soaking a bath will help you also.
The way of handling a flare is by meds given to you, a flare can stretch from 2 days to 2wks....avoid sun and heat as this does'nt help one bit and can trigger one off and if you do go out make sure your full protected against light and heat but rest is needed more with a flare.
You'll get all the support you need from us and it's nice to have you with us and introducing yourself.
((Love & hugs Terri))
Hey Julie, welcome to LWL. I am so sorry you are here. Well that u have been affected by Lupus that is. Anyhow. When u go into a flare just try to get plenty of rest! Try to get a hold of your doctor so u can possibly be put on medication that will help with the flare. Dont try to take immune boosting things!!! Thats like giving your Lupus more weapons to attack you with. It is very hard to deal with it in the beginning. It took me a year to have the feeling that I can deal with this. Just always keep in mind there ARE ppl who care, there are ppl that understand, and that you are not alone with thins. Some of the medications will mess with your mental state, so be prepared for this. I would suggest you get a therapist. That may help you a lot. also a local group will be good as well! if you have ANY questions at all or just want to vent. PLZ do so!!!
Thank you thank you for being so welcoming!
There's so much going on and so much information to absorb.. Another question is diet wise.. Like what stuff you cant have? I'm currently on a low salt/no sodium diet and everything tastes weird.
But thanks for the tip about the immune boosts! I'll make sure I'll stay far far away from them
I know. Its a lot to deal with. Just take it one day at a time. You will be ok. I never thought I would be ok, but I am. There are foods you can eat to decrease inflammation, since lupus is mainly an inflammatory illness and most of the pain is caused by inflammation just google anit inflammatory diet. I posted a link to it a wile back maybe u can pull it up here. Also Soy is not so good for you. They think that Lupus may be caused by an hormone imbalance. Soy contains estrogen... the no salt is a good way to go. Salt causes inflammation.
Hi Julie, so happy you're here. Terri mentioned Massage; at one point I could barely move and so my husband agreed that I should try massage. I don't think any doctor will agree with me, but I purchased a string of Swedish massages 1x per week for 8 weeks. The masseuse said I was hard like a rock when she first started and said my body wouldn't tolerate a deep tissue massage. I've been done with my 8 sessions for about two months now and I'm still up and walking. It was expensive but that's why credit cards were created. I'm so grateful to my husband and my lovely masseuse, Vivienne. (I'm hoping I made some sense here)
Thanks for the advices!
And my mom and dad give me massages every night before I go to bed or until I fall asleep.
The whole no salt thing is not so bad.. I can have some but not a lot... But whatever heals me, I'll do anything.
But.. Thank you thank you for your advices! Please keep them coming!
Hello Julie,
Your welcome from all of us and if your parent's are helping by massaging you all the better it really helps.
Soaking in a bath of salt water is so relaxing to the body also plus it helps the skin on healing besides making the sin alot smoother.
If you do have salt because i'm a salt lover and i have more because i've lost alot of taste from the sjogren's disease, you can buy low salt which will help you even more that's what i have.
Love Terri xxx
Hi Julie,
I'm so sorry that you have Lupus and are now having to figure out how to cope with this new way of life! It is really a shock to the system both physically and emotionally. We are here for you when you need people who understand and/or vent with!
When my body is in pain when I wake up - which is every day, I take my time. I work myself to a position in which I can get out of bed. Then I get to where I can walk some where. I get a cup of coffee and then honestly, I take a pain pill and try to sit up straight while it is kicking in. Mostly I am in bed in a reclining position. Once I have a little bit of relief, I just start up my day really slow. I think slow and easy and plenty of rest is the key.
There was another post where we talked about keeping busy while we rest and take it slow - reading, knitting, emailing, whatever you like to do, now is the time to really like it a lot! :)
When a flare is triggered, you should rest and let your doctor know in case there are other meds you should be taking. Try to handle it as well as you can. Stay comfortable and stay as rested as possible.
Sounds like your parents are awesome and very supportive!! That makes me very happy for you! With people like that in your corner - your flares will be made much easier!!
Let us know if you need to vent because it can all be rather frustrating.
Draginfli
Hi Julie. Welcome to the group! I just joined about a week ago but already have made some connections and have had questions answered and found some helpful suggestions. And even more importantly for me, i feel as though I'm not alone and that there are people who actually want to know how I'm doing and are more than happy to listen (or read) when I have complaints or a bad day.....I don't like to always tell the people in my daily life, especially my kids, how I'm feeling (I always worry that it'll sound like I'm being a whiner) but the folks here are happy to read what I write and respond with encouragements. I hope that's what you find here as well. I'm going to send you a frined request. If I can eer answer any questions or just be someone to talk to, I'm here.
I found out a little over a year that I had lupus and fibromyalgia, and found out a couple weeks ago that I also have hashimotos (another auto-immune disease). But looking back, i've had lupus symptoms for at least 16 years, probably closer to 20. (I'm 43).
Welcome to the group!
Welcome Julie. I was diagnosed July 2011. I'm pretty new to this. But the biggest things that has helped me.
1. Following the doctors prescriptions and communicating when something seemed to have an adverse affect.
2.Reducing stress and managing schedule for rest.
3.Muscle aches in the morning. Mentally telling myself, I have to get out of bed, after moving for a big and going through a Routine (studies have shown routine helps with lupus) it works itself out better.
4.Lately lite exercise and diet has been helping.
5. Setting smart goals. Sit down and think of goals you can accomplish and little by little you will feel the rewards as you accomplish them. And if there is any setbacks because of inflamation and pain, there'll always be another day, just know your moving forward.
Greensurfer!
This is wonderful!! With our brainfog it is sometimes hard to be organized like we used to be! Having a list is really helpful for me and everyone else too!
Thanks for the advice!
Draginfli
greensurfer said:
Welcome Julie. I was diagnosed July 2011. I'm pretty new to this. But the biggest things that has helped me.
1. Following the doctors prescriptions and communicating when something seemed to have an adverse affect.
2.Reducing stress and managing schedule for rest.
3.Muscle aches in the morning. Mentally telling myself, I have to get out of bed, after moving for a big and going through a Routine (studies have shown routine helps with lupus) it works itself out better.
4.Lately lite exercise and diet has been helping.
5. Setting smart goals. Sit down and think of goals you can accomplish and little by little you will feel the rewards as you accomplish them. And if there is any setbacks because of inflamation and pain, there'll always be another day, just know your moving forward.
Hello Greensurfer,
"Brilliant" answer and list for so many new comers plus it helps them understand an whole lot more about not overdoing it with the body besides the mind.
Love Terri xxx
Welcome to LWL!
I am relatively new to the group, but have found such a lovely support network here!
All the tips mentioned are absolutely spot on! I’'m still learning the ins and outs of SLE but one thing I know for sure (as I have issues with this myself) is that Lupus feeds off stress! The more you stress, the worse you feel, and having this disease gives us a lot to stress about! This is why a good, stable support group is SO important! I believe you will find that here and it sounds like your parents are wonderfully supportive as well!
((hugs))
Hi Julie - welcome to the group. I am newly diagnosed, just a month ago myself. I agree, this is a life changer! But it was also like a relief to finally have a name for my pain. I was having alot of sleepless nights before I was first diagnosed, but I have been resting after I come home from work and try to get in a nap, and I've been resting better during my sleep at night now.
I have tendonitis and my legs ACHE, constantly. My muscles feel tight and hard, and my feet swell. I try to stretch before I get out of bed, and this helps a little bit.
Trisha
Thanks for all the help, guys!
I'm just glad I finally know whats was going on... I've been in and out of the hospital so many times last month with lots of joint aches and chronic fevers, it was frustrating being constantly sent home from the ER, still not feeling any better and not being able to do anything but to lay on the couch all day and sleep...
But now it feels nice to wake up in the morning (minus the aches) and moving about again.
Hi Julie,
Your welcome from us all...as we're all her for pure support to one another.
Sorry to hear you been in and out of ER suffering with different issues but a nice bonus to hear you say, your moving about again although your still aching...ther's alot better than nothing.
Stay strong Julie....Love Terri xxx