New to Lupus and have some questions.

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Moe Moe
New Member


Date Joined Oct 2012
Total Posts : 3
   Posted 10/28/2012 12:54 AM (GMT -6)   
Hi Everyone,

I am a 33 year old female. I was diagnosed with Lupus 2 weeks ago after years of pain. The Lupus is "Mild" says my Rheumy Doc but I have very high inflammation and that is the main cause of all my pain. Even typing this hurts so much. Every joint in my body hurts so bad I wouldn't wish this on my worst enemy. I started taking Plaquenil and she said it will take 6 months before I start feeling better. She gave me a cortisone shot in my arm 2 days ago and so far I don't feel any better. I am taking Ultram for the pain and even that doesn't help 100% more like 50% if that sometimes. I changed my diet. I am Vegan now and cut out Soy so I can have a strict anti-inflammatory diet. I was doing Pilates but the pain is so bad it's hard to do it now. I take a lot of supplements as well.

I have joint pain all over but mostly my hips/pelvic bones aka SI joint and my hands and wrist. My neck is hurting a lot as well. I am stiff all over especially in the AM. I am very forgetful and I can hardly walk without hurting my joints. I also have hormone issues and I know it's linked to Lupus but they don't know how or why. Same with Vitamin D deficiency. I had very bad hair loss for awhile but that has slowed down. It's hard to breath and night when I lay down as well. It also seems like every day my pain shifts between joints, is that normal for Lupus? I am also exhausted and I physically feel depressed but mentally I am not if that makes sense?

Does anyone have any advice to help me till the Plaquenil kicks in?
Will all this pain go away?
When will the cortisone shot start helping me feel better?
Will the cortisone shot take 100% of my pain away or what should I expect from it?
Is there anything I can do to ease the joint pain for now?

I filed for disability and I have to live with my parents and my mother has to take care of me. I feel horrible and I was very independent but now I feel like a waste cause I just sit around and can't do anything. I want my life back :(

Can anyone help me please? I'm so lost and I am willing to do anything and everything if it will make me feel better.

Thanks,
Moe

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 10/28/2012 7:56 AM (GMT -6)   
((((((((((gentle hug)))))))))))))))
I understand your frustrations. When I was diagnosed last year I was told I had moderate SLE. I thought if this is moderate how terrible is severe?

The ultrim will have to build up some, but it won't stop all of the pain. Cortisone shots don't really last long for many people. You will start feeling the difference from the plaquenil around the first month and will improve slowly reaching full effect by six months. If the inflamation gets too bad you can ask him if you can have a predisone pack.

I classify my days by 3 catagories now-good, normal, and bad.
A good day is few and far between. The pain is on scale of 1-3.
Normal day is on scale of 4-6. Bad days are 7-infinity. :P

You learn to adjust your life around you days. You learn to slow down, but don't give up. Rest when you need to, but don't vegetate. You learn to listen to your body better. Try to find some support locally for face to face discussions, but come here also to vent and for tips.

Having a chronic illness causes some people to feel overwhelmed. I know I did. I had to seek extra help from a psychologist. After starting paxil it seem to help some of the aches more, because I was stressing too much which can cause more pain.

Pain tips:
heating pads
ice packs
hot showers
hot tub
tylenol (check with doctor for okay)
muscle rubs
floating in pool
Avoid sunlight, fluorescent lighting, and halogen lighting. If you need to go outside cover up with sun protective clothing, hat, and sunscreen.
Frequent rest breaks- listen to your body and don't overdo things.

It's not the end of the world just a change in perception.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 10/28/2012 9:11 AM (GMT -6)   
Hi Moe and welcome to our forum. Joy gave you a lot of good suggestions about pain management. I have had lupus for 23 years. I also have RA and Fibro, and several other serious health issues. I can relate to your pain issues. I hurt 24/7 and I'm on much stronger pain meds than you.

That being said, I find heat helps me the best. I get massages on a regular basis. I do stretching and am very in tuned to my body. When it lets me know I need to rest I do so. I try to avoid stressful things. I have severe lupus and have been on high dose steroids for almost 12 years now. You may want to ask your Dr for a brief try on steroids. I find the higher dose I am on the less joint pain I have and the less fatigue. However LONG term use of steroids have serious side effects.

Like I mentioned I have several other serious health issues. I understand how you feel about having your mom take care of you. My husband of almost 28 years, at times has to be a care giver to me, as well as my daughter. I am on oxygen 24/7 and I have days that I can't even shower on my own. I'm sure your mother doesn't mind caring for you.

Let your Rheumy know how bad you feel, he may be able to offer you additional meds to help control your lupus.

Please come and ask questions, or just vent if you need to, everyone here is really nice. Just wanted to let you know there are meds out there that can help you. Don't give up keep fighting, and let yourDr know just how bad you feel.

Hugs,
Barbara

Moe Moe
New Member


Date Joined Oct 2012
Total Posts : 3
   Posted 10/28/2012 10:58 AM (GMT -6)   
Thank you both so much. I can breath again! I thought the cortisone was going to quickly work and I would be 100%. I am taking 50mg of Ultram 3 times a day and that seems to keep me ok. The vegan diet seems to be helping a lot. I miss my BBQ and cheese but its worth hurting less. I am also starting to loose weight which I have not been able to do since I have pcos. I even have a little more energy.

Thank you again both so much! You both have really good advice and I will take your suggestions and talk to my Rheumy. I am taking it day by day and I will try to relax and enjoy life.

You ladies are awesome!!!

MetoYou
Regular Member


Date Joined Oct 2012
Total Posts : 97
   Posted 10/29/2012 10:26 AM (GMT -6)   
Hello Moe

Dealing with a diagnose like lupus is hard the first few weeks and months but it does get better in all good time. I actually dont no how my lupus is but i think its mild. (Hate to think what severe pain would be). Dealing with pain isnt all simple it takes time with the tablets i used to think i was going to be paralysed you are taking plaquenil for me it worked right within 2 months and my pain actually stopped altogether i still get the general knee pain but that manageable also i do find pain can switch sometimes it can be in my right knee then might move to the left i also take steriods at 10mg i believe that helps massivly as well but i eat alot lol. There work by slowly bringing the immune system back to itself at the moment its probley overactive so the tablets will help calm this down and stop inflammation to joints and muscles etc. I only got diagnosed in june at 17 and that knocked me back totally so am new myself. Try to rest when your flare is active thats what i did i find its best it just causes more pain if i move around. This pain will go away but can actually flare up agian i havent experienced this just yet.

Easing Joint Pain:
What i used to do:
1) Use some sort of rub like muscle rub worked for me abit
2) I used bandages to help support the joint once i put the muscle rub on
3) Having a hot bath relives the joint pain (once you get out though it creeps back after like 5 minutes)
4)When your body is in severe overdrive and pain is everywhere just rest its almost like when your in pain your body just wants rest
5)Try heat packs on affected area

Like everyone else says avoid sunlight, Flouresent lighting halogen lights
Going out in the contributed to my symtoms coming back now i no to wear clothes that stop sun getting on my spf50 sun cream helps me and wear a hat on your head.

Depression will always kick in with this illness but as everyone here has said to me stress is not good at all for your illness and will just make your situation worse i would just keep thinking to myself that i will get better and eventually the pain will go i hope you get better in time

Danielle

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 10/29/2012 12:05 PM (GMT -6)   
With lupus, while heat may feel good, it is usually inflammation that is causing pain, which should be treated with ICE - 20 minutes on, 20 minutes off & repeat.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Moe Moe
New Member


Date Joined Oct 2012
Total Posts : 3
   Posted 11/1/2012 1:50 AM (GMT -6)   
Thank you both for the advice. I also told my doctor if this is mild, I hate to see
severe! She said they consider it mild when it's not shutting down your organs. Yikes! The cortisone shot is finally kicking in and I have some relief from the pain but only 50% on a good day. The heat works really well I love it thank you! Ice does help for inflammation but it also tightens up the mussels and makes you very stiff. All of everyones advice is helping so much and I am trying to stay positive. Eating vegan and avoiding soy has helped so much as well. I know it's hard to think of but eating an anti-inflamatory diet is really important for all of us. I watched a documentary called "Fork over Knives" on Netflicks and they showed tones of scientific proof that being vegan cures your body and you are not prone to so many diseases. If anything I know meat causes inflammation so I am avoiding it no matter what and I have energy too which is nice for once :)


The other question I have now is about covering up from the sun. I don't have any skin issues. I get a nasty inflammed rash if I eat yeast but that it.

Do I still need to cover up and avoid the sun if I don't have Lupus skin issues? Or will the sun inflame the lupus in my body skin issues or not?

You guys are so awesome and I am happy I found you all!!!

XOXO

Oh and Happy Halloween!!!!

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 11/1/2012 8:09 AM (GMT -6)   
Contrary to the last poster, eating an anti-inflammatory diet can be dangerous, depending on what medications you are on. Lupus is your inflammatory process on over-drive, your meds are designed to contain the extra activity. Eating anti-inflammatory diet can mess with what the Dr is monitoring, and put your immune system back into overdrive. (Yes, that sounds anti-intuitive, but that's how my Dr explained it.) You should always talk to your rheumy about any big changes in diet or exercise --

Also, I must say I've *never* heard of "meat causing inflammation". I have had Lupus over 10 years and feel much better when I get adequate protein -- and yes, it's meat, not just tofu and beans.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

MetoYou
Regular Member


Date Joined Oct 2012
Total Posts : 97
   Posted 11/1/2012 10:31 AM (GMT -6)   
As lynnwood said iv not heard anything of meat causing inflammation i eat meat even with this lupus and there is never any changes all people may be different though. You should use sun protection i use spf 50 which helps try to cover up any exposed skin i know this is awful in the sun but i rather sweat then get these awful flares up again..

Danielle

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 11/1/2012 11:41 AM (GMT -6)   
There are several companies that sell sun protective clothing on the web: Coolibar, Sungrubbies, Columbia....
Sometimes you can find them in the sports supply stores.

As for me I wear thick Jeans, Coolibar long-sleeve t-shirts, and Coolibar sun hats. I also have a Coolibar Jacket and head scarf. I have two Columbia Travel shirts. I must warn you sun protective clothing is very expensive.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

pbjsammich
Regular Member


Date Joined Jun 2012
Total Posts : 66
   Posted 11/6/2012 7:43 PM (GMT -6)   
Hi, if you are taking Plaquenil, you should take care to cover up while outside. It is a form of malaria med and causes sun sensitivity. I've asked about special diets for lupus. All of my rhuemo docs told me eat in moderation and Lynwood is right, a little protein is good. I go thru phases of being a 'full on carnivore", I've noticed it usually comes after a bad flare/high stress attack.
Everyone of us has most of the same symptoms just in varying degrees.
and don't get in between me and cheddar cheese. ;)
Take heed what the others suggest especially the rest and relaxing.
pbjsammich
RA SLE
Acid Reflux/GERD

Ain't Life fun? :)
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