What symptoms and complications would you want to get rid of?

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Patients Lupus

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Member Carenity • Community manager
Posted on

For World Lupus Day - May 10, 2019 - Carenity listens to your voice: 

Lupus has various symptoms and complications, some of which are more easily managed than others.

Comment and discuss the lupus symptom or complication that you wish you could get rid of.

 

Beginning of the discussion - 5/10/19

What symptoms and complications would you want to get rid of?
1

Member Carenity
Posted on

I would get rid of the crippling fatigue that I feel during flare-ups, it really makes life difficult for me and I have to take a lot of days off work.

What symptoms and complications would you want to get rid of?
1

Member Carenity
Posted on

I wished I could just not have it.  I’m currently in an active flare and have been for about 2 weeks. Just want the the aches to go away along with the fatigue! But I’ll keep pushing.  

What symptoms and complications would you want to get rid of?
1

Member Carenity
Posted on

I have lupus with multiple symptoms. My doctor has me on plaquenil to help calm them down. My flares have slowed, but not my pain. It might help you with your flares.

What symptoms and complications would you want to get rid of?
Member Carenity
Posted on

My symptom that I would get rid of is the pain.  

My complication from Lupus is the effects it has had on my heart and lungs.

I have had 2 strokes as when I was diagnosed 28 years ago I was told it was in the lining of my heart and lungs.  

I have days when it is hard to breathe and days when my heart feels like it is going crazy beating funny and hard like it's going to beat out of my chest.  

I know I have a valve problem with my aorta and a murmur and will have to have surgery in the future and medication is not an option.

I understand my body and just try my best each day to be the best person I can be and concentrate on the people and things in life that I love.

God bless and to all the mother's out there, have a Happy Mother's day 😊

What symptoms and complications would you want to get rid of?
1

Member Carenity
Posted on

I would get rid of the constant Brain Fog  , Fatigue and Pain ( all forms of pain )

What symptoms and complications would you want to get rid of?
2

Member Carenity
Posted on

The last 3 weeks have been really bad for me. I've been in so much pain from my head to the bottoms of my feet. Joint and muscle pain, awful headaches that reach migraine status. Some days I couldn't tell you what hurt and what didn't. Plus I'm tired all the time. I am dealing with lupus and interstitial lung disease. The lung disease causes me to run out of breath easily and the simple things wear me out quick. Both cause pains in and around my chest. Something new that has been going on is I cannot think straight, I keep getting things confused. After Googling, I found 'lupus fog' and it definitely fits what has been going on. 

What symptoms and complications would you want to get rid of?
1

Member Carenity
Posted on

@Hidden username Hey friend I'm sorry that you are in so much pain unfortunately I can relate.  If you don't mind me asking, what are you doing for pain and what state do you live in?  It will get better, hang in there.  I'm in a flare myself that has gotten pretty nasty but I'm still having in after 28 years so keep your chin up.  I would recommend using CBD oil.  You have to do your home work finding a reputable company but I believe there is a group on here about it?  Another couple of products would be to try Kratom, but do your research to which I know there is a group site on here. It's all natural and a product called                     U-THRIVE It is made by a company called Prana and they also sell Hemp CBD oil.  I use their products and can tell you for me it was life changing but not everyone is the same so If you feel like it look them up on the web.  I live in FL and have my medical marijuana card and that helps as well.  Best wishes for a blessed day. 🙏

What symptoms and complications would you want to get rid of?
1

Member Carenity
Posted on

@Hidden username‍  Hey friend, thanks for your reply and info. That's a term that I'm becoming familiar with, lupus flares. Sorry you're having to go through those and pain as well. It definitely sucks to hurt and hurt so much and can put a damper on things really quick.

I tried CBD oil about a year ago and got it through my pain control specialist (I've had two back surgeries and was having them help with that pain). However back in August 2018 is when I began getting really sick and that September I quit the pain meds they had me on (Belbuca) but not the muscle relaxer. In December 2018 I would up in the ER.. the 21st to be exact.. had a chronic cough, fluid in both lungs, blood clot in both, severe lung infection in both and fluid around my heart. Was in bad shape.

After a few days in the hospital, a ton of blood work and working with a great team of doctors it was discovered that this has all stemmed from lupus that went undiagnosed and untreated for 2 years. Just recently discovered the lung disease. 

A few weeks ago I was put on Plaquenil to help with the pain associated with lupus, and Prednisone to help with the symptoms until the above starts working . Before that I was and am still taking Tylenol OTC. It takes 4-6 weeks for the Plaquenil to begin working.. which I've still got about 3 more weeks before it's supposed to make and notice a difference. I'm supposed to be getting a new med this coming week to help me breathe, CellCept, for the lung disease. This is all still so new to me, the diseases and what they do. 

I'm in Oklahoma. I've considered getting my medical marijuana card. With the lung disease, I wouldn't be able to smoke the plant but I do have an interest in the edibles. Also, I have a hard time sleeping. I wake up several times throughout the night. I did notice that the CBD oil helped with the pain, however the meds I'm on now, I believe interacted with CBD and lowered the effectiveness of the medication, so I'm not sure how that would work. I'll have to look again. 

I read that you've been dealing with the lupus for 28 years, I cannot imagine. That gives me encouragement though that if you can, I can.  I'll definitely look into the ones you listed and still considering getting my card.. just have to check with my team of doctors and make sure they are medical mj friendly and that it's an option. 

What symptoms and complications would you want to get rid of?
1

Member Carenity
Posted on

@Hidden username You are so sweet.  I'm glad I was able to give you a little hope.  My body is a"Trainwreck" as my hubby says but it's the only one I have so for me being on Prednisone for 28 years, and just about every type of pain medication along with muscle relaxers, nerve pain meds ugh you name it and Plaquinil.

Johnboy this is your journey and yours alone. Yes it effects those around us but if I could give you one piece of advice it would be to question everything, do your research and make good decisions for yourself so that the good choices that you make can be passed on to those around us as blessings.

We have a disease that eats our bodies away basically right?  Well at least that's the way I look at it.  Look into natural methods for relief like diet, accupuncture, homeopathic remedies, natural oils, there are a plethera of alternative ways to help subsid your issues.  I'm not saying don't listen to your doctor's but I am saying this is your life and it is your fight.  You are going to find good and bad in everything so choose how you want to proceed in trying to heal yourself.  Listen to your body and make good choices.  Oh my gosh! I sound like I'm taking to my grandkids LOL but it's the truth no matter how old we are. 

God bless 🙏