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Thread: Newly diagnosed, freaking out, need some support!!

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    Default Newly diagnosed, freaking out, need some support!!

    Hi everyone.

    First of all Im totally aware this is a lupus forum, but i couldn't find anything nearly this great elsewhere, so im not sure if its okay to post here or not; im not actually diagnosed with Lupus..

    Just got diagnosed on Monday with UCTD and Rheumatoid arthritis- the rheum said its very close to Lupus, but he's not sure at this stage if i had enough criteria to fit the lupus - although its in my family. he's started me on Paquenil.

    History; a few years of being constantly sick, constantly run down (including being really sick on my wedding day!!!!!!) missed a lot of school, and never worked more than one full time week in a row at my last job - at least at this job im sitting down and can cope slightly better. constant swollen glands, severe carpal tunnel, all over aches, severe fatigue (you guys will get this - its not normal tiredness, its sleep p anywhere, cry everywhere, too tired to even lift my own body weight to walk tiredness); pseudo seizures, suspected endo (ended up being unexplained).. and the list goes on ..

    the diagnosis came out after a recent miscarriage (hubby's and my much wanted, first child) and finally deciding i was sick of being fobbed off; i'd had an ESR test done many times over the last few years and kept getting high results and nothing more was done until last week when they ran the ANA's etc. Rheumy couldn't believe they'd missed it, he said i'm such a classic case!

    anyway, i'd be interested to hear from people, first of all any tricks of the trade on how you cope? im really not coping at work, and not sure what to do; haven't approached my bss yet...

    secondly, anyone been through a pregnancy recently? im partly concerned that this may have caused the miscarriage, but also concerned about a pregnancy on the drugs; although he's assured me it's fine.
    any support would be great...
    thanks guys... and again, hope it was ok to post here

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    Hi Lainy,
    Welcome to the site. You are in the right place. UCTD is an Auto-immune disorder and indeed very closely related to Lupus. It is good that the doctor put you on Plaquenil. You know though the Plaquenil will take up to 5 months to get the full benefit of the medication in your system and Plaquenil is one of the top of the line drugs used in the treatment of Lupus. Plaquenil will help with the excessive fatigue that you are feeling and the pain, but I am wondering if your doctor put you on any NSAIDs for the inflammation going on in your body.

    There are a lot of good folks that come in here and they have good information and are very knowledgeable. I hope that you keep posting.
    God Bless.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi Lainy,

    My name is Rob, and I was diagnosed with Lupus in 2004. I'm also a moderator here, and I want to reassure you that you are welcome here, and you most certainly can be a member, and post here. You'll find that many of our members do not yet have a diagnosis of Lupus. It's a notoriously hard disease to diagnose. None of us would ever wish another person to be diagnosed with this disease, but people like you have very real symptoms, and you need to know what's causing those symptoms before you can begin to treat them.

    I have a family member who has Lupus too, my mother. My diagnosis was quite a shock for me though, as I'm a guy, and only about 15-20% of people with Lupus are men. There is no solid answer in the medical community yet as to whether Lupus is an inherited disease or not, but I personally believe that you can inherit at least the predisposition to being vulnerable to it. I also believe that environmental factors can trigger it. I see so many people here who have other family members with Lupus that there has to be some sort of inheritied component.

    As far as how to cope, that can be really hard to do sometimes. Two things I avoid at all costs are sunlight, and stress. Sunlight will trigger a "flare" in me without fail. Sunscreen, hats, and long sleeves are constantly on hand wherever I go. Stress, will trigger a flare for me too, but's it can be hard to avoid. As far as work, I owned my own business, and I had to quit and go on full disabilty. The stress, the chemicals I was around, and the long days just about ruined me. I get "brain fog" quite badly as well. It's actually called Cognitive Dysfunction. It causes me terrible memory problems, and I was forgetting things like basic safety in my shop around machinery and was becoming a danger to myself. I hated to lose my dream of my own business, but I had no choice. Having supportive people around you can make all the difference in the world. And interacting with others in places like this, and learning about the disease can also make a huge positive difference. An informed patient can be their own best advocate when dealing with Dr's/Rheumotologists.

    Anyway, I just wanted to say hello, welcome, and by all means make yourself at home here.

    Rob

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    Hi Lainy,

    Welcome to the boards. I was dxd with UCTD for over a year before it morphed into lupus/Sjogren's so I understand the place you're at right now. You certainly fit in here and we'd like to help you however we can. Coping with a new dx is tough and being young and still working makes it that much harder, but you'll find there are others here just like you and they will offer you valuable advice.

    Remember, if you have a bad day and need to vent, or have any kind of question (there are NO stupid questions, they are all valid) we are here for you.
    SLE, SJS, vasculitic neuropathy, Degenerative Disc Disease, Chronic Autoimmune Urticaria

    Plaquenil, Imuran

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    THANKS GUYS!!
    You guys are amazing.
    Hey i have some questions - to those who have been on Paquenil, did anyone take it through a pregnancy?

    And Rob - how do you cope with that brain fog? its absolutely overwhelming!!

    And about some of my symptoms - just to make sure they are symptoms of this - headaches? (like every single day and night) temperature? and when i get up in the night or in the morning, it wil sometimes feel like a joint or bone is actually completely broken - but then its not? and emotionally - a complete roller coaster..

    it's been a terrible day! but i managed to procrastinate and not do too much typing. my wrists are agony, and i will just start crying when i try to type.
    also been stewing over a conversation with my mother last nite, who told me i shouldn't be trying for a pregnancy, or going on medication, that i should just try a really good diet?
    thanks everyone for al your support!!

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    I forgot some of my questions - Rob, i did some research on the sun part - when you say it causes a flare, do you mean only rashes? cos for the last few years, i've always felt really ill after any time spent in the sun - shocking headaches, body aches, sore throats, and totally totally exhausted. do you know all this time i thought that was normal?? and that everyone experienced it? well how wrong was i! my husband said he has NEVER felt that way after being in the sun! is this part of the UCTD?

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    Hello and Welcome Lainy;
    You've been greeted and given great information by our members. I'm just adding my "welcome" to the mix.
    With reference to your question about sun exposure causing flare-ups: No, it is not limited to skin rashes. For many of us, sun exposure can also cause headaches, extreme fatigue, nausea, and other symptoms which can include skin rashes. So, we are very careful about limiting our sun exposure and taking precautions to protect ourselves.
    I am so glad that you find our web site helpful. You will find that there is always someone ready to help you when you need it! :lol:

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

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Quote Originally Posted by lainy
    I forgot some of my questions - Rob, i did some research on the sun part - when you say it causes a flare, do you mean only rashes? cos for the last few years, i've always felt really ill after any time spent in the sun - shocking headaches, body aches, sore throats, and totally totally exhausted. do you know all this time i thought that was normal?? and that everyone experienced it? well how wrong was i! my husband said he has NEVER felt that way after being in the sun! is this part of the UCTD?
    Hi Lainy,

    When I get a flare from being out in the sun, it can cause a rash, but usually it means sore joints, a low grade fever, exhaustion, chills, and an overall feeling that I'm on fire. Burning skin, even though I didn't actually get a normal sunburn.

    If I was to ever really screw up and get enough sun to cause a traditional sunburn, I'd probably end up in the emergency room, or worse. The best way to describe the flare is that it feels alot like having the flu. Not fun. I've always reacted badly to the sun, even long before I was diagnosed with Lupus.

    I thought it was only because of being really fair skinned. I thought it was just normal to feel like crap after being out in the sun. Now I know better. As far as the brain fog goes, I don't really cope with it. I just endure it. It's one of the worst symptoms I have. I've tried some of the meds that are supposed to help with cognitive dysfunction, with no good results.

    I used to be in a career that involved some really technical abilities, but I can no longer put all that info together into a coherent thought. I forget how to spell words that I learned in the 1st grade. I wander the house wondering why I went to a certain room. It sucks. But, I just have to move on despite it. Easier said than done some days. Anyway, hope we can help you figure out what's happening to you.

    Rob

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    Quote Originally Posted by lainy
    And about some of my symptoms - just to make sure they are symptoms of this - headaches? (like every single day and night) temperature? and when i get up in the night or in the morning, it wil sometimes feel like a joint or bone is actually completely broken - but then its not? and emotionally - a complete roller coaster..


    also been stewing over a conversation with my mother last nite, who told me i shouldn't be trying for a pregnancy, or going on medication, that i should just try a really good diet?
    thanks everyone for al your support!!
    Your symptoms could very well be from your UCTD or from another source. These things are so hard to pin down. I've been constantly amazed at how far-reaching these diseases are. They seem to have the ability to affect any and every part of our bodies. Your emotions are perfectly normal in that you're trying to come to grips with a new dx and how it's going to affect your life. I've been on that same roller coaster for one and one-half years and I'm ready to get off but something always crops up to keep me on a while longer. That's not to say you'll be the same. You could very well get the right mix of meds quickly, become totally stable or even go into remission, go on with your life and have no need for us or this forum any more. It could happen!

    About that diet thing....If only it were that easy!! Your mom just doesn't understand the seriousness of your disease. I think I can speak for everyone here when I say that none of us would be on the many drugs we take if we could simply improve our diet and be done with it. It just doesn't work that way. Your goal is to keep your UCTD from morphing into full blown "whatever." You can't control it with diet alone, although a healthy diet and exercise is always a good thing.

    As for the pregnancy part, you really need to talk to your OB/GYN about that very important issue. Some of the A/I drugs absolutely must be avoided during pregnancy and if you do go ahead with it, you need to work with a doctor who is very, very experienced in working with women, pregnancy and autoimmune diseases. I'm sure there are others here who can give you first hand information as well.
    SLE, SJS, vasculitic neuropathy, Degenerative Disc Disease, Chronic Autoimmune Urticaria

    Plaquenil, Imuran

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    Hi and Welcome!

    I'm pretty new here, but I've been freaking out alot less since I discovered this board and talking to the people here!! I hope it will be the same for you!

    Just a note about the sun exposure; I didn't understand either, and thought it was all about my skin. The Doctors and people kept telling me to stay out the the sun, but no one could really explain to me why. Once I fully grasped the seriousness of how UVA rays effect us, and implemented a new sun free lifestyle, I have felt sooooo much better over all. It doesn't stop me from having Lupus, but the change is really quite remarkable.

    I would recomend trying the precautions that Rob spoke of, just in case it will help you to feel better. I wear 85 spf sunscreen even if I'm not going outside, and sunglasses always. I've mcuh fewer headaches now.

    Hang in there and the moments of relief will come!!
    Peace, Love, and Light
    Frekkuls
    It takes both sunshine and rain to make a rainbow.

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