Page 2 of 3 FirstFirst 123 LastLast
Results 11 to 20 of 26

Thread: so frustrated

  1. #11
    Join Date
    Apr 2014
    Posts
    26
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    http://i61.tinypic.com/2wrhs1u.jpg
    http://i58.tinypic.com/4j86c2.jpg
    there are some photos of my rash when it flares up. it just seems so obvious that Lupus is my problem, not having any kind of diagnosis is incredibly frustrating!

  2. #12
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
    Join Date
    Nov 2001
    Location
    Victorville, California
    Posts
    7,721
    Blog Entries
    9
    Thanks
    1,578
    Thanked 919 Times in 582 Posts

    Default

    It is good that you are educating yourself about Lupus, but you cannot force your doctors to give you a diagnosis. As I mentioned in an earlier post, perhaps you need to find different doctors.
    As we are not doctors, we cannot give you an answer as to weather your rashes are due to Lupus or not. Tests must be conducted in order to make that determination.
    Please consider following some of the advice that we have provided here in order to lessen your frustrations and to possibly get some answers!
    I wish you the very best.

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

  3. #13
    Join Date
    May 2007
    Location
    Seattle, Washington, USA
    Posts
    2,998
    Thanks
    256
    Thanked 146 Times in 77 Posts

    Default

    Hello Mike...I read a few of your posts and thought maybe my words could uplift you…help you a bit to find a way to cope.

    When we feel lost and feel the only answer to stop the pain of feeling lost is to stop living, taking our own life is there because we do not have the experience or the coping skills with this or any new rising issue or situation that is plaguing us emotionally or physically. So, we think this is the only way out...but it isn't. That is when we have to build a wall of support, of people around us to hold us when we feel we can't stand up....and not build a wall to leave people out…to be alone. We need people…so reach out to those you trust. Reach out to me and anyone here..okay.

    I have felt I could no longer cope many, many times. I called my body a box that houses my spirit and felt I could just get rid of the box. Why not I thought? Listen to your spirit, your heart…it wants to live. And when you get a proper diagnose or even just the right drugs you will find you’ll be okay and life is worth living and a life that you can enjoy.

    I want to ask, though not diagnosed are they treating your symptoms? That is foremost regardless of the diagnosis or not. Perhaps find a new DR that would be open to try the SLE treatment drugs, i.e. Plaquenil which is the first line of defense to help with your malaise, fatigue, joint pain and facial rash. It can take 5 weeks to many months to find some relief. For me it was 5 weeks. If they work, how lovely would that be...

    I would suggest you keep a journal of your daily physical and mental feelings and also of your physical activity, stress factors and the foods you eat to see what your triggers are. Then you will be better to manage it if it is Lupus…but too again with any disease those things are imperative. And also the journal may help with a proper diagnose for your DR to look at.

    Me…I live a paced life now. I look at Lupus as it is something I share my life with and not something that has taken my life away. If I live a paced life it keeps it tame, but I do go crazy…yes, even at 52 and I’ll have at life, dance..work too hard in the yard, hang out in the sun…ride horse but I know Lupus will probably come and collect. So sometimes the fun outweighs the pain, the flare Lupus will bring. I know the cost. Knowing that it helps me emotionally when it takes me down...I rest, eat good...stay inside...read, watch TV...do light things and feel gratitude to the comfy of my bed, the cool sheets…the warmth of my sock monkey hat, the coolness of ice cubes and the switch that I can turn the lights off… until it gives me my body back.

    I had Lupus, unknowingly all my life. I never knew what it was...I started to get sick more often when I was 26 and wasn't diagnosed until I was 43. At first I had hives, face rash would come and go…fatigue…felt like I was blah. Nose ulcers. What brought it to the surface, loud and blaring is when I had back surgery when I was 38. It was relentless. I was diagnosed with depression, arthritis, allergic reaction to an unknown things. I was told I did not eat enough protein and stop being a vegetarian. I was tested for everything but Lupus. It wasn't until my third back surgery...Lupus took me down. I couldn't walk. I had to put my hands in my hoodie pockets because I could not let my arms dangle because my joints hurt so much. I ask my late husband was he poisoning me, he didn't laugh. I wondered if it was my house, a gas leak. Tested...no. I hought they left gauze or a surgical tool in me??*&^%$#@!

    When I was in a severe flare and the face rash never left I Googled ‘Joint pain face rash’…Lupus came up. I made an appointment with my DR. I said I think I have Lupus. He did the anti-ds-DNA test. Though it is not a SLE specific test per se, if it pops +, and you have the other symptoms…it is more than likely Lupus. Came back positive and with all my other symptoms I was diagnosed. After I was diagnosed I could see where it was present in my life and the triggers. Stress, sun…foods. Where it showed up…when I moved, when I got married, when I used a tanning bed…when I mixed my own dirt. Surgeries...even dental cleanings.

    It is in fact possible to have the symptoms and your blood work will always come back negative. Blood work isn’t a sole indication of the activity of the disease, but that doesn’t mean it can’t be a tool. I could be in a moderate to severe flare and everything comes back fine or borderline. I don’t think I ever popped positive with the ANA test.

    What I would be concern with, Mike is that they treat the symptoms regardless of not having a diagnosis. Your goal should be to feel well as you can and not let not receiving a diagnosis affect your spirit.

    My triggers: Florescent lights…gawd avoid Walmart. I have been in one three times in my life and each time I came out sick. So, if you go to Walmart treat it like a day at the beach…cover with SPF, sunglasses and clothes.…. computer screen (I wear sunglasses) , Roasted soy beans, peanuts, preservatives, processed foods, sugar, caffeine in high doses…like a cup of coffee, Peat Moss, house cleaners, surgeries as I have had 5 major surgeries. Those affect my brain fog big time and I go into a flare where I feel like I was hit by a Mac truck, I have the flu and drank a 1/5 of booze the night before. Peat moss, stress and cleaners ignites nose and mouth ulcers in me.

    So, I avoid those things for the most part. If they are in my life it is because I am aware of it.…but sugar is hard to avoid because I do like my cookies and a Hershey’s so I do indulge but not heavily. I do use cleaners and Peat Moss but I cover my face.

    Things I do to help with the body pain. Take a nice warm shower and rinse off in cold water. I take an OTC pain pill, like Tylenol…I can’t do ibuprofen as I have GERD or I take a Tramadol or Vicodin. Helps me to sleep without pain..and I am able to unfold more easily. It is really important to get to sleep. It is one of the big things that can tame Lupus for me. I just order Kava tea, should be here this week to help me to sleep deeper. I don't want to use prescription sleep aids anymore. Hope this works..

    I eat fresh for the most part. Nothing in a colorful wrapper..just anything in a colorful natural skin as in fruits and vegetable. I rarely drink alcohol. I very rarely eat anything from a box or can…processed or frozen. I have never been into fast food..but I do have a friend who loves it. So, I find myself in a restaurant that only has it. Like Carl’s Jr…so I eat chicken strips, fries and a water. I do feel icky when I wake up the next morning…but I throw caution to the wind because we have a good time and too, he will eat at my fresh places…I like fresh Pho Ga’. No rice noodles..I like it with zucchini threads. They are so many things out there that modifying our life is easy now…

    Try to learn to life with your symptoms and not let them consume you….you will get a diagnosis, regardless if it is SLE and with the proper drugs, lifestyle you will be able to live a good, fun, fulfilled life. And achieve your goals.

    Though Lupus is the major shareholder in my body…it comes in second to my spirit.

    Having a disease gives us an opportunity to learn about ourselves...our bodies, our spirit…and will lead us to live a compassionate, passionate life. I know it is hard to think in those terms now…but you will find it will tame most diseases, to distress yourself and get some Zzzzzzs..

    Keep looking for your wellness, Mike...
    Hugs..Oluwa.
    Last edited by Oluwa; 05-04-2014 at 09:07 PM.
    I have Lupus. So *^#@! what.

  4. The Following 3 Users Say Thank You to Oluwa For This Useful Post:

    Moonbeam (05-05-2014), Nonna (05-14-2014), Saysusie (05-16-2014)

  5. #14
    Join Date
    Jan 2014
    Posts
    163
    Blog Entries
    1
    Thanks
    26
    Thanked 42 Times in 35 Posts

    Default

    I also had lots of problems after a root canal. But a bridge was worse and caused me to have two extra teeth removed thanks to them being sawed on (or whatever you call the filing of them down) by the dentist. Now I am looking into implants and that scares me too. It seems like any time I have work done on my teeth, it just opens up a can of worms and causes more problems. I just want to have a full set of teeth, but dental work has not helped me to have a full set. I don't think my lupus came on though because of dental work. I believe it was there from the time I was in my teens or 20's. My teen years were really stressful as I was trying to be "perfect" and get straight A's in high school. I came pretty close graduating in the top 2% in my high school class, but still did not reach my goal. Also tried to look "perfect". Don't know where this "perfectionism" came from but it brought on a lot of stress and I believe my lupus. Hang in there. Lupus is not the end of the world. I am 64 and lupus hasn't defeated me yet. I am still hanging on and have had a pretty good life so far. A lot has to do with attitude. Yes, lupus has been hard on my body and soul and particularly frustrating, but when I think of the alternative, I just keep on trucking. Life is worth living, believe me. I believe in God, and he gives me strength everyday. Take things day by day, it really helps.
    Last edited by Moonbeam; 05-05-2014 at 06:44 AM.

  6. The Following User Says Thank You to Moonbeam For This Useful Post:

    Saysusie (05-16-2014)

  7. #15
    Join Date
    Apr 2014
    Posts
    26
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    as my tests have all returned normal and my skin biopsy wasn't useful in showing lupus i have decided to pursue all avenues available to me and i'm seeking consultation with a biological dentist. i've been ill ever since the root canals and it's too much of a coincidence. i know it's a long shot but it seems too strange that all this has happened since they were done. i contacted the dentist and he sent me a symptoms list which he wants me to rate from 1-5 on severity in the last 6 months.

    nausea, constipation, diorreah, bloating, food cravings, ear infections, tinnitus, confusion, poor concentration, dizziness, slurred speech, learning difficulties,anxiety, depression, mood swings, rashes or dry skin, headaches, faintness, dizziness, fatigue, apathy, lethargy, joint pain, muscle pain, tingling, tremor, muscle weakness, sinus problems.

    I have experienced all these symptoms over the past 6 months and i'm hoping he can help me.

    I thought i had developed ulcers inside my mouth earlier but upon examination they look more like i've bitten the inside of my cheek whilst asleep as opposed to ulcers. there was one occasion i got an itchy arm rash after sun exposure but this was the first time i'd been out in the sun for months and i think i was sunburnt. the rheumatologist noted i have redness under my fingernails although i've always had this, it appears to be worse now.


    i have no idea where to go or what to do. Everyone thinks i'm a hypochondriac and i don't know how much longer i can go on like this without a diagnosis, treatment or any help.

  8. #16
    Join Date
    Mar 2011
    Location
    pinjarra, western australia
    Posts
    2,925
    Blog Entries
    1
    Thanks
    1,398
    Thanked 1,618 Times in 1,108 Posts

    Default

    I know it can be long frustrating road please keep us informed
    When you're stressed, You eat Ice cream, Cake, Chocolate & Sweets. Why? Because stressed spelled backwards is DESSERTS.

  9. #17
    Join Date
    May 2007
    Location
    Seattle, Washington, USA
    Posts
    2,998
    Thanks
    256
    Thanked 146 Times in 77 Posts

    Default

    Keep looking for your wellness even when you feel defeated. A good DR is a hard find. If you mention what area you live in, maybe someone here can give you a referral to their DR that they like.

    Lupus is an accumulative disease..not all symptoms at once so it is imperative to maintain a journal of your symptoms. They should treat your symptoms regardless if them name what ails you. Humm. I would press them and do not ever doubt yourself, your symptoms or minimize them. Sometimes other then DRs, us here and trusted friends and family it is best not to mention your symptoms. Sometimes we don't get the response we need to uplift us and can spiral us into a flare, depression, worsening symptoms. Stay true to yourself and know, you know within yourself you are not well.

    When I had a dental implant, it took two years for it to stop aching daily..now it aches around the implant when I flare. Inflammation. Has your dentist performed another x-ray to ensure they indeed removed the root? Check all possibilities out.

    Keep looking for your wellness, Mikey..
    Hugs..Oluwa
    I have Lupus. So *^#@! what.

  10. The Following User Says Thank You to Oluwa For This Useful Post:

    Saysusie (05-16-2014)

  11. #18
    Join Date
    Mar 2014
    Posts
    4
    Thanks
    1
    Thanked 1 Time in 1 Post

    Default

    i have all of your symptoms and more, most days i feel like this, it is a tough disease and sometimes not a fair one

  12. #19
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
    Join Date
    Nov 2001
    Location
    Victorville, California
    Posts
    7,721
    Blog Entries
    9
    Thanks
    1,578
    Thanked 919 Times in 582 Posts

    Default

    Oluwa;
    Your response filled with uplifiting words was beautiful. Thank you so much for sharing it with Mikey and with us!

    Moonbeam; I loved your response also. Thank you

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

  13. #20
    Join Date
    Apr 2014
    Posts
    26
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    i went out in the sun the other day for hours and was absolutely fine. i'm starting to think i may not have lupus for the first time in a long while and that it could be the toxic dental work causing my issues however i know my symptoms still make lupus a possibility despite my normal bloodwork. I see the dental specialist tomorrow so hopefully he will give me further insight into what is causing my ill health

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •