I'm having a really hard time

trinity9058

right now. I'm just exhausted. My limbs feel like they weigh 300 lbs each all by themselves. I'm so tired I can barely walk the 50 feet from my desk to the bathroom. My pcp took me off of my ibuprofen so we could see if it is helping with anything and also to get a baseline lab without any meds besides my plaquenil and my vitamin D. I have to wait a week to get those done and then I can start prednisone and my ibuprofen again but I honestly don't know how I'm gonna make it until then. I am actually falling asleep on my 15 minute breaks. I don't know what to do. My mom, a nurse, says get more exercise then you'll have more energy. I understand how that works, but she doesn't have lupus so she doesn't understand how debilitating the fatigue can be, not to mention how much everything hurts right now.

I'm also starting to run into conflict with my family members about my energy level and the constant need for rest. I'm having to tell them "no, I can't do that. I'll have to rest at some point." My dad is giving me a hard time about it the most. He keeps saying "you're not gonna lose that weight if you don't get up and do something." Normally, I wouldn't say this but that kind of advice coming from someone who until just recently sat in a recliner 12 hours a day and weighs 360 lbs himself is not helpful or supportive.

I don't know what to do or handle this situation. I've always been guilt tripped before whenever I needed to do something for me but I'm not putting up with it anymore. This is BS and I'm sick of it. Any ideas anyone?

sewmom73

I'm sorry you're having such a rough time.... that really sucks. I'll let you know what I do, first of all I do take plaquenil, prednisone (low dose), an anti-inflammatory (stronger than Advill) twice a day, various other Rx's, Vitamin D, Calcium, and a multivitamin. But I've also added (new as of this year) a super-fruits juice, it has mangosteen, noni, acai berry, I don't remember what else. But I get it at the local health food store, and I don't know what it is but I swear by it, I have felt SOOOOO much better since I started drinking it. I have less aches and pains, more energy, I've been way less sick (I used to get colds all the time). Anyway it may be worth trying, it costs about $20 a bottle, but it lasts for a month, try it for a few months and see. Since I've felt better, I am able to exercise more during daylight hours, and then I'm tired at a "normal" bedtime, so I sleep better.
Hope that helps some. If you want the name of the juice I get let me know and I'll get that info to you. Feel better.
((((hugs))))

lovelylauralady

I really would love to know the name of the stuff you bought at the health food store to help your lupus. Can you post a picture of the bottle?

sewmom73

OK my daughter is not home right now, so I have no clue how to get a picture of the bottle on a post.... sorry I'm lucky to even be on-line
I got it from The Fruitful Yield, they are local in the Chicago area but they are on-line too fruitfulyield.com the name of the one I like is by NOW and it's Certified Organic Mangosteen SuperFruit Antioxidant Juice
it has Organic Mangosteen Juice, Goji Juice and other juice concentrates and is naturally rich in Xanthones (I have no idea what that means) it is 32 oz.
and you only drink 1 oz a day so it will last a month, it doesn't taste too bad, I tried another Mangosteen juice that was so nasty, I ended up sending it back I bought that from Swanson's on-line. yuck it was BAD.
Hope that helps.
Like I said I don't know if this is really doing any good or not but I figure it's an all natural juice so it can't be hurting me, and I've felt better, good luck to you all.
Sharise

trinity9058

I also take calcium and vitamin D and multivitamins (6 a day). I'll look into that juice. Thanks!

lovelylauralady

sewmom thank you for the tip on the supplement I will definitely be looking into that!

EPhinn

I'm so sorry you are having so many issues lately. As far as the fatigue and pain, I usually take that time to take it easy. I still have to survive on coffee, because I have two littles that I have to keep an eye on during the day while my husband is at work. My husband will sometimes give me a hard time about my energy levels, but I think he is starting to get it.

With such low energy levels, all you can really do is try to stay as active as you can. Get a stability ball and sit on that instead of a chair. It requires a little more energy from your core to keep you upright and stable. Try doing some sitting exercises, and maybe try meditation.

I hope you feel better REALLY soon and your doctors figure out your medication situation.

trinity9058

Well I did make it through the week and I do my labs and start my prednisone burst on Monday. I'm interested to see if it is going to make a difference. I'm still not allowed to take my ibuprofen until after I've been taking the prednisone a couple of days to see if it helps anything all by itself. I'll let everyone know how I feel this week. Hopefully I won't gain a ton of weight. At this point in my life, I'm trying to concentrate a little more on figuring what medicines will work for me instead of losing massive amounts of weight. I'm just happy with not gaining lol. Thanks for the support all

lstone03

A woman on another website I frequent who has lupus recommends taking MSM. I haven't tried it yet but she said it helps her with fatigue and pain.

EPhinn

My rheumy has me on DHEA for my energy levels. I've noticed a difference with that and a cleaner diet. I went on vacation and ate garbage AND forgot to pack my DHEA and my energy fell within a couple days. Made me amazingly happy to get home.

~Leah

trinity9058

What is MSM?


I've never thought of DHEA. I'll have to look into that. Thanks!

Three days in it's going pretty well. I've actually lost three pounds and I suspect it's because I've had more energy and have actually been able to do things. Last night I even did a load of laundry and it's been almost a year since I did that. I have to keep decreasing the dose but my doctor says that the dose that my symptoms return at is likely the one that I'll be on permanently. Hopefully I can keep a balance.

AnnInTexas

Trinity, I so feel your pain.
I hope you keep posting to let us know how you are doing.

I was diagnosed with Lupus about a year ago, and have been on all kinds of meds. Pred is definitely the one that makes me feel the best, but also makes it hard to lose weight. I'm meeting a new rhemy this week, who also happens to be an internal med doctor -- so I'm hoping he will come up with the magic combo for me!

Don't overdo it, just because you are feeling better. Yes, you do need to incorporate some exercise into your life, but I have found that when I do the Pred burst, I feel so much better, that I just go and go... and then ultimately end up with a Lupus flair and I'm down for an entire day. I'm learning to pace myself, although it just kills me to have to admit I need rest.

Good luck to you!
Ann

trinity9058

I am definitely learning to pace myself lol. Yesterday was my last day on it and I'm already feeling the loss. I have learned something that I think is very important over the last couple of weeks though and that is that I don't feed myself correctly because I am TIRED!! I just always thought it was because I was too lazy to put in the effort to make myself a decent meal but while I was taking the prednisone, I was cooking and shopping and watching what I was doing and I was excited about it. It was amazing! I also had the energy to do 20 minutes of exercise (that was about all my hips could take). I felt good on it but I suspect that I really just felt like a "normal" person would. It felt good though.