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Thread: My doctor says my Lupus is stable but i'm still in pain am i crazy!? help!

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    Unhappy My doctor says my Lupus is stable but i'm still in pain am i crazy!? help!

    I was diagnosed with lupus when i was fifteen. Every doctor i have seen have all said i have a "hint" of lupus. My rheumatologist now says my lupus is "stable" but i've had my gallbladder removed when i was 18 years old. I was in the hospital like 5 times in one year because my health kept falling apart. (because i was over working) I am worried because i'm 20 now and i have so much pain STILL!! my legs, arms, hips, back, and so many other things hurt all the time! Sometimes i can't breath and idk why and the fatigue is ridiculous! i'm literally falling asleep in public places @.@ but my doctor wants me to see a psychologist and I DONT WANT TO >.< i'm not depressed ok i GET depressed it's random and hits pretty hard when it does but i know the source is my circumstances right now (i'm homeless) so i don't need to go to a psychologist to just identify something i already know. and on top of that he suggested i take anti depressants or something that can help me but i don't want to because i heard it's very very very bad for you the side affects are horrible! on top of that he thinks that after i see the doctor he will cure my lupus pains and i can't believe he is disregarding my symptoms and chalking it up to simply "its all in my head" when my ANA was positive and everything >:( not to mention my flare ups when in 2010! Please help me someone anyone who knows about about stable lupus. i'm happy it isnt as bad as it can get but it doesnt make my discomfort go away :'( in fact i can't even keep a job because if i work to hard i get sick. i cant even hang out because i get fatigue so quickly. i can't even go walking up the street without running out of breath! I have shared a huge list of my ailments to my doctor but he still is like "go see a psychologist"

    Please help because they have given me so many drugs and i'm afraid because of my young age i'll get sicker. isnt there any organic substitutes? I tried to ask my doctor that too but he just blew me off. Never the less i just have to know if i'm normal all these years of going through this pain and nausia just for something Stable? =.= i'm still in pain heeeeeeeeeeeeeeelp >.<

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    a couple things i have learnt.
    i have had lupus for over 35 years.

    i also have fibromyalgia.
    fibro is another auto immune disorder.
    check into it.
    many of us have this also.

    also many of us take antidepressant medication.
    and we are not depressed.
    one of the side effects of lupus can be an imbalance in our natural mental state.
    we need medication to help with this imbalance. others call it depression medication.
    we just need it for other reasons.
    also this type of medication does help with constant pain.
    those of us who have constant low level pain, can find a big benifit from this type of medication also.

    if you have bad side effects with a particular brand of depression medication......
    talk to your doctor about changing the brand.
    i myself use 2 different brands.
    1 at night is to help me sleep, and kick start my morning dose.
    the 1 in the morning is slightly stronger, and in my main medication.

    many of us have tried organic remadies.
    please do not go down that road.
    there is no natural remady that can replace what we need.
    our main stay drugs like plaquenil are what are called desease modifying drugs.
    that means that the drug creates a chemical reation in our body.
    this chemical reation is what helps us.
    there is no natural alternative.

    many of us need quite a few different medicines.
    the ultermite is to get to a balance where we can reduce many of them.
    but until we can find the balance it is not uncommon for some of us to take 20 or so tablets per day.

    please remember that we have a medical condition, where our natural balance has been altered.
    we do not have a broken bone that can be set and forgotten.
    we need constant care to get our balance back.
    many of the conventional care plans do not work.
    we use drugs that were designed for other things, as they are the ones that help.
    it is not unusual for us to take malaria drugs, low level cancer drugs and anti depressants even though we do not have these ailments.


    i hope you can stay with us, we are a friendly group dedicated to helping each other.

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    No your not crazy. I'm sorry you feel he is not listening. I have found that some people do not get it and I have learned to find someone who does. I used to tell my daughter there's a ton of people out there for a reason just like Drs go get a second oppion. I have found this group very helpful and full of very kind hearted people who do care your in pain. Oh by the way I take cymbalta which really helps me please try a antidepressant it does help take the edge off. My sister also takes cymbalta she has has fibrmolgy and she feels like a new person take care vicky
    Last edited by vicky62; 08-07-2012 at 04:43 AM.

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    I KNOW EXACTLY WHAT YOUR GOING THROUGH! My doctor says all my lab work are coming back good so I must be depressed. I told her no im not but im getting depressed because I feel like crap all the time. Look I was like you about the pain drugs but soon I had to accept that I had to take them if I didn't I couldn't even get out of bed. I haven't been able to work or go to school in 2 years, im 21, I can't even go grocery shopping anymore without getting exhausted.
    the antidepressants I highly suggest giving it a try, my mom actually made me get on them when I was 16 because the steroids made me so crazy. It makes me feel so balance and all around calm and peaceful.

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    You have made my day!!!!!! I just posted in Laurie's Lounge about the difficulty I am having and it is just like you! My blood work has come back stable and shows no activity at this time and I know that is great BUT my joints on my fingers ares till swollen and the pain is soooooooo bad! It is frustrating when they can not see what hurts us so much! There are a few indicators that did show up last time but they had nothing to with my Lupus. You know what really hit home for me about your story.........I was an accountant for the State of Arizona. I missed more work that I actually worked because I was sick all the time! You would think I licked door knobs that's how sick I would get! I am on methotrexate and that does lower my ability to fight off infections but come on............one after the other is exhausting! I am on short term disability so we can get everything under control. Did you stop working???? I hope you did so that you can allow your body to rest when it needs to.

    On to the antidepressants. I am on one. I fought and fought my doctor on this but in the end I agreed to try it and I do have to admit mine is mild and it actually has helped with the imbalance that most of can experience. I did not have really any side effects and so the transition was easier than I had expected. I also say a therapist when I first got sick. Again, she taught me coping mechanisms I could use when I was not feeling good. I have to say the experience was good and I would recommend it to anyone.

    As far as it just being in your head..............no. Do not let anyone in the medical profession make you feel bad because you are in pain. Do not let them tell you that they can not help. If your current doctor is saying that, go find another one. Someone will listen and someone will help it just takes time finding the one doctor who wants to invest their time and knowledge into you and your disease. You should never feel bad for feeling bad! It is not in your head and it is real and we will all be here to support you on the journey of finding some relief. Just rest as much as possible and start looking for another doctor who may be able to help. Remember, you are never alone!
    As I grow to understand life less and less,
    I learn to love it more and more.

    Age 29, Lupus for last 7 years

    Medications: Methotrexate, Lyrica, Celebrex, Flexeril, Theophylline, Bactrim, Xopenex, Lisinopril, Ultram

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    Default Thank you so much

    Quote Originally Posted by Danica01 View Post
    You have made my day!!!!!! I just posted in Laurie's Lounge about the difficulty I am having and it is just like you! My blood work has come back stable and shows no activity at this time and I know that is great BUT my joints on my fingers ares till swollen and the pain is soooooooo bad! It is frustrating when they can not see what hurts us so much! There are a few indicators that did show up last time but they had nothing to with my Lupus. You know what really hit home for me about your story.........I was an accountant for the State of Arizona. I missed more work that I actually worked because I was sick all the time! You would think I licked door knobs that's how sick I would get! I am on methotrexate and that does lower my ability to fight off infections but come on............one after the other is exhausting! I am on short term disability so we can get everything under control. Did you stop working???? I hope you did so that you can allow your body to rest when it needs to.

    On to the antidepressants. I am on one. I fought and fought my doctor on this but in the end I agreed to try it and I do have to admit mine is mild and it actually has helped with the imbalance that most of can experience. I did not have really any side effects and so the transition was easier than I had expected. I also say a therapist when I first got sick. Again, she taught me coping mechanisms I could use when I was not feeling good. I have to say the experience was good and I would recommend it to anyone.

    As far as it just being in your head..............no. Do not let anyone in the medical profession make you feel bad because you are in pain. Do not let them tell you that they can not help. If your current doctor is saying that, go find another one. Someone will listen and someone will help it just takes time finding the one doctor who wants to invest their time and knowledge into you and your disease. You should never feel bad for feeling bad! It is not in your head and it is real and we will all be here to support you on the journey of finding some relief. Just rest as much as possible and start looking for another doctor who may be able to help. Remember, you are never alone!




    I know I haven't come here in a while. I have just felt so hopeless and miserable. I hadn't worked in a year and finally got a data entry job. I thought it would be wonderful since I'm not exerting myself

    Only to find myself missing weeks at a time. I'm too fatigued to go to sleep I go to bed extra early too so I can wake up early but honestly I have slept days at a time no lie. I wake up to go to work and the tired is so extreme I feel winded and dizzy so I go back to sleep only to open my eyes and it's night time! I never leave my house but then when I do literally I feel like I'm walking on heaven for about 5 minutes then when I sit down it hits me like a ton of bricks !! I even fall asleep again! Whether it be on the bus or on the train.

    My family and friends think I'm depressed or grumpy but really I'm just so tired I can't even muster up the effort to speak. Literally words are draining

    I eat as well as I can !! I clean my home just to sleep after

    I am grateful for everyone's advice

    I tried the anti depressants just to have these crazy anxiety attacks !

    I'm just waiting to. Get fired. I'm applying for Ssi waiting to get denied lol I did before but never appealed I was too tired LOL

    Just thank you I'm really happy ik not the only one going through this tough time

    I just wish I could get help I don't want to lose my apartment

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    Oh do I understand and empathize!!!! ...all too well. I call it my narcoleptic period, which when the disease is active is soooooo bad!!! Do you have an understanding family? That can make a big difference!
    We're here for a good time, not a long time!!!!!

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