PDA

View Full Version : Newly diagnosed, freaking out, need some support!!



lainy
11-05-2008, 01:27 AM
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

KathyW1958
11-05-2008, 04:10 AM
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

rob
11-05-2008, 06:24 AM
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

Jesse
11-05-2008, 08:45 AM
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.

lainy
11-05-2008, 10:43 PM
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!!

lainy
11-05-2008, 10:52 PM
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?

Saysusie
11-06-2008, 12:46 AM
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

rob
11-06-2008, 06:24 AM
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

Jesse
11-06-2008, 12:26 PM
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.

frekkuls
11-06-2008, 06:03 PM
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

lainy
11-06-2008, 10:39 PM
thanks everyone for your overwhelmingly kind and detailed answers.

unforunately as far as the pregnancy, the rheumatologist didn't think i need to see an ob/gyn - but i'm thinking of asking my gp for a referral to one - i work for the hospital, so i know them well; perhaps they would even give me a corridor consult. i think i will ask the next one i bump into; i'd definitely feel better if they would monitor me; especially after the previous miscarriage, and being unable to prove that it wasn't related to my new diagnosis of UCTD.

tried to talk to my boss this morning but after i hung up the phone i cried; she really doesn't get it. unfortunately my previous boss resigned and this new lady just doesn't know me well, and must think im just a hypochondriac, as after the miscarriage my GP put me off work for 3 weeks for post natal depression from all the hormonal changes. so she probably thinks im a waste of her time. unfortunately i prob just have to hang in there, until i get pregnant and can go on maternity leave. but i ain't planning on going back after the baby is born!!

well i've taken the Plaquenil for two days now and no side effects - would they be kicking in already??

thanks everyone. you will honestly have no idea how much your support means. i even feel more positive with my husband, cos i can relay to him what i have learnt, and he really understands better now that i have a label for my feelings.

blessings,

Lainy

Saysusie
11-07-2008, 09:30 AM
Lainy;
UCTD is an auto-immune disorder that just hasn't manifested into one specific illness yet. However, the treatment for UCTD is almost identical to the treatments for Lupus. Also, as in the case with Lupus, your doctors will want to make sure that your symptoms are under control before approving you for pregnancy.
I truly hope that you are able to get pregnant and that, this time, you carry to term and deliver a very healthy baby. Doing so, nowadays, with auto-immune disorders is more the norm than the exception!
With reference to your Plaquenil. Your doctor should have explained to you that Plaquenil can take up to three months before you see or feel any significant improvement. The drug must accumulate in your body in order to be effective and this takes some time. The good news is, once the Plaquenil starts working, the symptoms respond very well and, quite often, do not come back. Most doctors will prescribe Prednisone with the Plaquenil so that you can start to feel relief from the symptoms quicker. Did your doctor prescribe Prednisone? If not, perhaps you can discuss this option with him or during your corridor consult.
I am always perplexed how hospital employees (such as your boss) can be ignorant about auto-immune disorders? At any rate, perhaps you can provide her with some information about how the disease is systemic and, therefore, any and/or all parts of your body (muscles, tissues, organs) can develop symptoms that cause you great pain, fatigue and all over malaise. Therefore, when you call on Monday about muscle pain, and call on Tuesday about heart or lung issues, and call on Wednesday about dizziness.....these are all very real symptoms of your disease and not figments of your imagination. Your boss needs to be educated so that you are not made to feel unworthy!
I am wishing you the very best!

Peace and Blessings
Saysusie

Jesse
11-07-2008, 10:10 AM
Lainy, I am absolutely amazed that your rheumy doesn't think you need to see an OB/GYN with regard to getting/staying pregnant. Is he going to monitor you? That's not his area of expertise. BTW, multiple miscarriages are often associated with lupus....and since you're undifferentiated, there could be some lupus in the mix. One miscarriage may not mean anything, but you need to be working with a doctor who really knows his/her stuff with regard to preganancy and AI diseases. You owe it to your baby and yourself. Geeze! I want to kick your rheumy! Where does he live? (just kidding) :wink:

If you haven't had any stomach issues with the Plaq. yet, you may very well be home free. For me and others I've spoken to, we got queasy at the very beginning, but it soon stopped. Plaq. must like you! Be patient. It does take a while to kick in.

Please do some research on UCTD. Today rheumys like to hit it hard right at the beginning, like Plaq. with MTX or something else that suppresses the immune system, so that it doesn't morph into something else. Studies have shown this approach is much more successful than treating with Plaq. alone. Unfortunately, that didn't work for me, but you could be more successful, as many are. Your doctor's comment about the OB/GYN really makes me wonder about how competent he is. It's really, really important that you educate yourself so you can be a partner in your care.

lainy
11-07-2008, 03:09 PM
hi guys.
thanks again for more information.
im so shocked that it doesn't seem like the rheumy is doingas much as he should. i should prob mention that i live in NZ..
my consult was 15 minutes and i see him again in 6 months, i will admit it hardly seemed enough. but then again, it was the most medical attention, and definitely by far the most competent and understanding, that i have ever had. much better than being constantly told ""your glandular fver is flaring" or, ""you just have a cold"" or, ""you need to go to bed earlier"" so, 8pm is not early enough for a 21 year old??

jesse, ive definitely had queasiness, but then i had that all day every day anyway, this is only a smidgin worse, definitely nothing i can't cope with cos it's become so normal. i'm taking it at night like you guys said.

im definitely going to see an ob/gyn in the corridor and ask them about all this! hope they take me seriously..

Jesse, whats an MTX??