Living with a chronic condition, how do you manage?

So i found out that i have this chronic disease called lupus. Basically white blood cells attack both toxins and healthy cells ( which can cause more serious problems if it attacks vital organs). there's no cure currently.

Anyways i started to have massive joint pain/swelling where i can't sleep at night. Migranes and i get a nasty red rash on my face.
Im always tired no matter how much i sleep and struggle to do simple things opening a water bottle/medicines.. its frustrating to always depend on others and the pain is unbearable

I lost friends and my boyfriend gets frustrated to because there's so much i can't do. I stopped going to work and feeling so useless (though it might seem like im being lazy)... and school is another problem because sometimes i can't hold a pencil
Its hard to understand but for people who have chronic condition how do manage?

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Most Helpful Guys

  • I know how you feel. I have nothing terminal. However I do have a condition that is pertinent without surgery. (I can't affoard to be off for surgery) Even if the surgery was successful I would still be messed up.

    I've stopped eating out with other people. I don't think my girlfriend really gets it.

    The lack of red meat makes me weak.

    It's depressing. I guess I focus on the possitive and try not to dwell on it.

    Does any of this help you:
    resources.lupus.org/entry/treatment-options

    As painful as it is maybe a bunch of bone marrow transplants?
    www.conversantbio.com/.../4-Benefits-of-Bone-Marrow-for-Lupus-Treatment-Research

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  • Whatever it is, you CHOOSE to never let it get you down, and YOU focus on everything good, and do whatever you can, to reduce the pain, but ultimately, some just have to live with it, and cope.
    I REFUSE to let it get the best of me, and I fight it, like I was fighting someone HUGE GIANT, in a boxing ring.
    Some have no idea, and I don't discuss it, because they just say TOTALLY STUPID SHIT, like have you ever: and some stupid thing that they found on Web MD, or some BS fake pill site!!
    Go away, or you will get punched, idiot!! Don't you think I have checked all of that over all the YEARS that I have had this condition?
    But, being in CHRONIC, DEBILITATING PAIN, doesn't excuse you, if you want to punch some idiot for suggesting something stupid, that you already knew, and isn't helpful!!
    Try to think positive, and with their small mind, they are trying to help!!
    Unless you have constant, CHRONIC pain, and 6 Advil barely dulls it, you cannot understand!

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Most Helpful Girls

  • Well i'm dealing with brain cancer. I'm kinda in the same place as you are. But i can't think of dating anyone right now. I am Feeling tired and depress and headaches and hair loss. It all spinning in my head. But i tried to keep contact with my friends. They are the best medicine. I don't see them much or talk to them a lot. But they still manage to make me feel hundred percent better. At first i wanted to have distance from everyone. I just wanted to be on my own. But when they started asking me out and how i am doing and told me how things were while i was gone i found out how lonely and sad i was. So i tried to participate as much as i can. Which isn't a lot but it is still enough for me.

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    • What a sad story.

      I am really sorry. And I pray u will be fully heall in jesus name. And live to enjoy every moment of ur life

  • I knew a mother daughter team who ran a health food and supplement store; they both had lupus diagnoses from late teens. I recall both women taking over 20 pills a day (this was 15 years ago, many are multi vitamin options now) and both managed to keep flare ups at a minimum. Vitamins a, b, c, d, e, zinc, calcium. Iron. I remember those for sure and I believe there was some wisdom about avoiding excessive heat and sunlight as well. I find that for my own nerve pain and back problems that marijuana (or CBD oil if you prefer no head change or feeling high) helps quite a bit and it's nice to help me sleep. I genuinely hope you find some methods to help ease your symptoms. Lupus isn't uncommon but it's quite a vicious illness. Take care of yourself & try not to get too agitated or stressed. Good luck to you ; I wish much happiness and healthy days ahead of you. Please don't forget, your diet is one of the most direct ways that you can see results and get some relief from your symptoms.

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What Guys Said 28

  • My life for 18years ^^ hey u.
    For half my life I've struggled with paindisorder, epilepsy and some. Can't hold a job nor get into a school 'cause I'm a risk. Sucks ofcourse, cause I love being active. Feeling dismissed and so forth.
    I've always had my interests in home too. So I use em. Games to pass time, get more social activity on, learning and challenge. There's always more useful stuff within the reach in the interweb.
    There's studies about this too. Burn victims who've lowered their pain medication sumption when using gaming to shift their focus. When the pain gets stronger, you notice it more. Noticing aka focusin on the pain makes the experienced pain more stronger. Shifting the focus in something enough motivating, lowers the experienced pain. This worked for me too, so now I don't take as much Oxycodon. Ice works for me too.
    But more than that, working around the issue. Doing meaningful things. Things that improve me. Learning and being active. Like gym to when I can. The issues don't dictate what I do, but I respect em. They're a part of me, and I can't get rid of em so. I carry em with me to see me succeed.
    Attitude goes along way. Brain and experience even more. The body will listen to the mind and will take me where I need to. I might take more time tho ^^ but I got music and the skill to stop and look around.

    I wish you and you're loved ones well and happy. Find your things and use em for you.
    Feel free to pm me as well. When ever.

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  • I have psoriasis- also an autoimmune condition- which leaves my skin less than handsome and contributes to arthritis problems. I also understand "secondhand frustration" since my wife has hearing aids and I have to repeat things I say to her quite often. I just take things one day, one hour- or if I have to- one minute at a time. I would suggest checking out the Lupus Foundation of America and their resources, support groups, etc. for specific coping mechanisms. We will be praying for you.

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  • My girlfriend hoping fiancee's best friend has lupus she had to have a kidney transplant not to long ago its hell on a person's body and hell on their mental health and emotions too. Its a devastating disease that takes a lot out of a person the only thing you can do is treat the symptoms of this disease and surround yourself with loving friends family and a good support system and take one day at a time and get check ups periodically

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  • I too live with a chronic disease called alcoholism. Currently trying to just manage my chronic masterbating...1 and a half days no fap... one day at a time. I'm going to need a ton of alcohol to get through 90 days.

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  • As someone with stage 5 CKD, I understand the joint swelling 100%. I get gout more often than id like (Basically just swelling within joints) and it keeps me housebound for up to a week and the pain can linger for a few weeks. All you can do is get on with it, some things are out of your control and all you can do is roll with the hand youve been dealt.

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  • Soooooo sorryyyyyyy... Really, I felt that bolt of pain going through my chest while reading this... 💔
    Why don't you contact these guys... They might help. Or seek an alternate to it...
    https://www.lupusresearch.org/who-we-are/contact/

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  • Well I have had type 1 diabetes since I was 3. It was very difficult and frustrating. The most important thing you could do is have supporting and cheerful people by your side. Since there is no cure at this moment I wish you all the best and may your condition only get better

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  • Seek out a Lupus support group. They will help manage you into a productive lifestyle.

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  • Tinnitus (ringing in ear); I have good and bad days. Best when I'm outside to help drown it out. Worse when I'm lying down. Need a white noise machine to sleep.

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    • it's kind of insensitive when somebody comes to something like this to talk about their own, much less deadly affliction. Tinnitus is a walk in the park compared to lupis man people don't die from tinnitus

    • lol nvm didn't see the part about chronic condition how do you manage, tinnitus is a chronic condition, my bad. I thought you were just one of those people who when someone is down in the dirt complains about their own less bad problem. Would delete comment if could

    • Hey honey I feel for you. I have a tinnitus masker on my hearing aids. Sometimes helps.

  • As far as I know my friend's facebook she's reached 38, thriving in her career and got married. I don't know how she manages it though. She's really optimistic, sarcastic and loves the lord.

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  • I have Crohn's disease if you've heard of it. It can make life inconvenient at times because I always need to know where local bathrooms are and during flare ups I have crazy abdominal pain. Luckily I have a mild case so I have it a lot better than some other people with the disease who need constant surgeries to remove their diseased and damaged intestines. Some end up shitting in a bag for the rest of their lives so I consider myself quite fortunate.

    My mindset is that there's always someone out there who has it worse than I do and if they can get out of bed everyday and live their lives then so can I. Keep your chin up and maintain a positive attitude. People who are impatient with what you're going through aren't good friends.

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  • There's a new drug that was recently approved by the FDA called Benlysta (Belimumab). It's a biologic drug that you get as a shoot or a transfusion. Have you given that a shot? (No pun intended)

    Personally, I struggle with persistent allergic asthma that is particularly worse in between September and April.

    One thing that I did was learn everything I can about my condition, and I'm talking very technical stuff, reading medical textbooks and journal articles. It definitely helped me cope.

    Lupus is one of these conditions that may be difficult to control, so another thing I would do is try to make your life better in other ways and try not to let it get you down. I know it's easier said than done, but illness is a challenge that life throws at you that you have to face, and hope you don't have to do so alone.

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  • I don't have one, but I really hope you're able to manage this, because that is really rough.

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  • Chronic back pain after breaking my spine. For some reason surgery wasn't an option right away, they started me off with pain meds, and then worked my way through chiropractors, physical therapists, more pain meds, and spinal injections. Finally got a spinal fusion and a bunch of pain meds, feeling much better now.

    What helped me the most before that though was just icing the area, and then using a warm blanket on it. Also litocan patches and icy hot worked pretty good as well. It didn't take the all the pain away, but it made my muscles relax some, which took away some of the pain. Never found a way to help with the pain that was deeper in my back.

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    • You mentioned litocan. Is this a new drug or are you referring to Lidocaine, the anesthetic?

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    • Can't say that they did, is that something that you've had to do?

    • I've received it for shoulder problem (after 25 years of giving massages) and on a twisted ankle. When I worked at a chiropractor's office, I also gave it to patients as part of my job. The other often-used type of therapy is electro-stim where they put electrode patches on you which give a mild pulse of electrical stimulation to trigger the muscles to move. Ultrasound works well on me, but not my wife. As in many things, we're opposites on our bodies' reactions to various therapies. :- )

  • I lost my best friend to gasintestinal disease and It the horrible experiences.

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  • It's a struggle. I was diagnosed with Ulcerative colitis when I was 26, so I was already exercising and eating decent, which after medication, I bounced back real quickly. Only recently the condition has been wearing me down. I'm seeking a specialist who seems very understanding.

    Fortunately I came across more people who were accepting of my condition. Even though they are nice, I tend to ignore them when things flare up. I do that so I won't come off as a bother, even though they may not be bothered by me, I dont want to wear out my welcome.

    I try to focus on the things I can do, and stay happy. Neither of these are easy, but I fight for both them, otherwise I know I will go into a dark spot

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    • Also, I will pray for you. Continue to focus on the good things, even if they're small, focus on them. It helps a lot.

  • I stockpile medication and limit exercise and my diet.

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  • Got no choice deal with it and live out the time you have left

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  • It's NEVER lupus! - Gregory House

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  • Do what you can do, forget about anything else.

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    8

What Girls Said 10

  • Few things...

    I have a chronic genetic disorder. No cure. I loose a lot of ability function to. So I know all about it. Mine is called NF2.

    2. Start working on ur diet. Basically, go vegan. Or 90 percent vegan. Why? Animal protein causes inflamation and ur joints don't need any of that. Ur first biggest step will be cutting out added sugar. White/added sugar I flames. Eat a fruit lol its sugar, yes, but it's digested differently bc of their nutrients.

    Along with diet, u make wish to seek a micro nutrient test to see if ur body I'd deficient in needed vitamins. I'm low in zinc. (comes most in meat) but I'd rather do zinc suppliment than inflame my body. Zinc helps create new cells to fight bad guys but Def ask Dr.

    3. Meds, do u use for depression like me? I do anxiety too. Look up the PGx test. It's a new test for SSRI Meds and moods. It uses ur DNA to see which Meds work best based on ur body. I took 2 Meds that were on my list for most likely to cause side affects. So I got switched to a med listed as least likely for side effects and now I'm no longer as tired as easily :)

    I can't control what NF2 does to my body but I sure as shit can choose what goes in my mouth lol

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    • Pls a question for u?

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    • born withOUT the tumor surpressing gene"""

    • Oh my God. That is a sad news. I pray u shall e
      Receive fast healing . In jesus name. amen

  • I'm separating this link with spaces because I'm not xper 2 or more so I can't post links yet. But this site has really helped my friend who has lupus.
    ht tps : // w w w. web md. com / lupus / guide / lupus-living-managing

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  • I have migraines. Luckily I live in a welfare state where it's alright to be sick so sometimes I simply have to call in sick from work or skip school because it's so bad.
    When they do happen I usually take some pain killers, lie down in a dark room with a cold compress on my neck and try to sleep

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  • Have chronic siatica, when it gets really bad I can hardly walk, i either need a stick or crutches to lean on to walk and I hunch over like a really old person and just can’t straighten up, going up stairs have to sit down and kind of shuffle up on my bum. That usually lasts a few weeks then subsides but my right leg is completely gubbed there’s no muscle tone in it so walking with a limp.
    Most days it’s fine though, except a sharp pain in my foot to remind me my backs fked.
    I don’t have a choice but to manage I’ve kids to look after. I think always someone worse off than me, people like you for instance.
    School should be accomadating you and your illness. Take your iPad or tablet thing if you have one and use that

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  • I have epilepsy. Don't expect anyone to understand or have compassion. Management is difficult and gets easier in time. Just ignore others life live yours the best you can

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  • I've heard of this before but only know a person that has healed from it. She's a law of attraction teacher.

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    • you can't get healed from it, it's a chronic life-long condition

      you can only treat it and hope for it to go into remission

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    • she did heal herself from it.

    • @Bluedream13 check her youtube interview with constance arnold. Her name is Carole Dore.

  • i have an extreme rare case or juvenile parkinsons, there's only 12 people that it the whole world

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  • For me that's depression and I'm very very lonely.

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    • I'm sorry to hear you're so lonely. I had deep depression for 9 years, so bad I wanted to commit suicide. But now, it no longer controls me, consumes me, and overwhelms me. It still trys to creep back here and there, but I'm able to fight it and rise above it. I know you can too!
      How come you're so lonely? Do you have any friends?

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    • 9h

      It's not hopeless case at all. Everyone, no matter who they are can have friends, even if it's only a few close friends. I'm going to private message you and ask some questions to help you find friends and do what you enjoy/love, just like I did and how others have! 🙂

    • 8h

      Thanks. It really is easier said than done.

  • My boyfriend lost a really close friend to lupus and I know Selena Gomez also has that. I'm sorry to hear that, I hope you'll be okay.

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  • I have PCOS. I get laser hair removal. And sometimes I have periods that last months but they’re very light. I just wear a certain type of underwear

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