My First question, at least I think there is a quetion here somewhere
I was diagnosed in June with SLE with a side of Raynaud's, Fibromyalgia, Sjogren's, and anticoagulant and anticardiolipin antibody. They are just now discovering that I have probably been sick for at least 7 years. As of 7 years ago when I finally gave birth to a healthy child, I almost die on the table and wound up in ICU for two weeks. At the time, they assumed I had eclampsia, though none of the normal tests revealed that. What lead to the diagnosis this past year, was I developed a rash on my upper arm, that they thought was ring worm, but it quickly spread across my entire torso, and upper back. They did a biopsy and it showed consistent with Lupus. My initial consultation with a Rhuematologist and Immunologist confirmed through the criteria check, and many lab result. So here come the tough part: Since the diagnoses much has happened quickly, I went into kidney failure and underwent dialysis, I bleed none stop from June to December, which led to an emergency hysterectomy (though the ovaries where left in), I have been hospitalized with Pneumonia, as well as MRSA (after the surgery). And now, I am home, and quite frankly lost, terrified and unsure what to do?
I struggle with Doctor patient relationships, as I never am able to converse with them normally. I have a million questions, put tend not to ask as I do not want to burden or bother them. But this leaves me with zero knowledge about what I am dealing with. I though I could learn all I needed to know online, and discovered that will not work. One site makes it sound like all of this is no big deal and life goes on as normal, another site makes it sound like each flare up has the potential to kill me. Worst of all, I do not even know how to recognize a flare up. I am constantly in pain, (Though the medication Plaquinil 400mg a day has reduced it some.) I constantly ache and run low grade fevers every morning. My skin burns and itches at time to the point I cannot sleep. (I have gone the last 5 nights with less than 2 hours sleep, thanks to my skin.) I get headaches every day, I always feel like I have bronchitis, and every day tasks are exhausting.
When I discuss these things with a doctor, I do not get much response, other than "this is normal with the disease, we will see how things go on the Plaquinil". So I am left to conclude that I am just to sit back and deal with things until the point where the medications get it under control. But then a voice in the back of my head tells me that this is a dangerous route to take. And finally to top things off, my depression which I learned a long time ago to control, is back in full force and I am no longer able to shake it.
SO......long story short, I am seeking others that understand this disease to maybe help focus me on where to go first, or maybe at least help me learn what matters and what does not. I apologize in advance for sounding so manic, I am not normally so scattered, but I do fear I am loosing it just a bit these days. I am very thankful to have found this forum though, for speaking with others that have never lived this is difficult, I always get the response, "well you look really healthy" and it is a lost cause from that point forward. Any thought, advice and or guidance would be very much appreciated.
I have read a great deal already, and will continue to read more.
Thank you for the warm welcome and I look forward to getting to know everyone.
First of all, I don't think you sound manic at all. You sound like a reasonable person who is dealing with a confusing and sometimes frightening disease. I know how you feel about getting the response "well, you look really healthy". It's the same as "but you don't look sick". Many of us have heard one form or another of this dismissive phrase far too many times. It can be maddeningly frustrating.
It's good to hear you have been started on Plaquenil. Keep in mind that plaq is a slow acting med that can take time to start working, sometimes up to three months. I'm wondering if this is the only med they have started you on. When I was first diagnosed with SLE, I started on plaq and on Prednisone.
Despite the sometimes unpleasant side effects pred can cause, it did get my lupus disease activity under control fairly quickly. Pred can be a very effective and fast acting anti-inflammatory drug. In your case, it could have the potential to really help. If you're not on it, perhaps you could talk to your Dr./Rheumatologist to see if they think it could help you. Are you taking any other meds, like an NSAID such as Aleve (naproxen sodium)? Naproxen is available OTC and can reduce inflammation very quickly and help get you through a flare.
As far as knowing how to recognize a flare, that's something that will come with time and experience. Although everyone is different, and each individuals flares can be very different from one flare to the next, there are usually some common signs that people will learn to watch for. With me, the start of a flare almost always begins with mouth sores. I also get a very distinct burning and itching sensation under my skin. It usually happens on my legs first. My actual flare symptoms vary widely, but are almost always preceded by these two very distinct symptoms.
That's all I can think of that could help you in the short term (my brain is a little foggy today too). I predict by day's end you'll have a bunch of responses with good advice and suggestions. Our members have a good base of knowledge here. I know things are confusing, and scary right now. But have hope. I've been living with SLE successfully for over 8 years now. There are others, like my Mom, who have lived with Lupus for over 20 years and are still going strong.
Hang in there,
Last edited by rob; 02-02-2012 at 07:10 AM.
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Thank you for the response, When I started the Plaquenil in June I did two back to back 12 week tappers of Prednisone. However, because of my recent surgery and the clotting issues they have discontinued it. It also is the problem with naproxen, for whatever reason due to the clotting I cannot take it at this time. I take blood pressure meds and antihistamines, but that is it so far. The burning itching sensation deep under the skin is something I am experiencing and it is maddening, I was not sure if that was a part if the SLE or if I just had really bad skin. I guess one problem I have is, when do I know to call the doctor. I do not want to drive them crazy, since I am on Plaquenil do I just deal with the flares or is there a danger in ignoring them? I also wonder what the highest dosage of it is, I am at 400mg a day, is it possible to increase this? lol...that is more a question for the doctor, just not sure if I wait, or get back in now. My next appointment is not until May.
Thank you for not thinking me manic, it is so nice to have others who get it to talk to, and the knowledge here is amazing. Not that I wish this on anyone, but seeing others who are experiencing the same conditions is somehow reassuring.
i do not know where to start.
you have asked lots of good questions.
you are no manic, just a scared person trying to find logic in the kaos.
this is why we (whl) exists.
i have always held doctors in high esteem. they were always people to look up to, and trust.
recently i have realised there are good and not so good doctors.
you have the right to find a doctor you can relate to, - and he/she relates to you.
you pay there wage, every visit. if you are not happy with them, find another and try them out.
i am sure you would not take your car to a bad mechanic.......
i write down the questions i want to ask, before i go to a doctors appointment.
my local gp holds out his hand and asks for the list now, so does my rhuemy.
as the doctors start talking, i forget what i wanted to ask..... listenning to them instead.
if your complications continue...... my (non doctor) brain would conclude....
you do not have the correct mix of medications for you.
lupus can effect everyone differently.
it can effect different parts of each persons body.
what effect it has one one person, may not effect the next.
different medicines are required for different organs......
one of the hardest things with this desease is getting the balance right.
once you get it right..... lupus can effect a different part of you, and you may need to modify your medication again.
it is not unheard of, to have to adjust medication on a regular basis.
there is a medical link between this desease and depression.
it is not that you are a depressed person..... it is that your body does not function as it should.
one of the common effects is corrected by depression medication.
not all depression medicines suit all lupus patients.
there are several threads where this is mentioned.
many of us need the balancing effect this type of medicine produces.
i certainly do. i actually use 2 different types to get the balance right.
may i suggest that you start a pain diary.
in it you list how you are feeling.
what hurts / and what doesnt.
once again there are a few threads discussing the diary idea.
i am happy to offer a couple of examples of a diary if you want them.
remember it is by sharing out trials and triumps that we gain control of our lives.
i get lots of information from others on this site.
everything i have written, i have learnt from other sufferers, and a few caring medical practioners.
there is never a silly question.....
only silly answers.
thank you for asking....
as it has made me recollect my ideas, and prioritise what is really important.
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I read your post and almost cried. I've been there, I think most of us have. You've gotten some good advice so I won't add to it. I'll send some hugs instead.
Steve, your words truly helped calm me down a bit. I never once thought of keeping a diary, and I love jotting things down. I cannot believe I did not think of it. At least I would feel like I have things mapped out better to try and explain them to the doctor. I would love examples of what kind of information you track in yours, kind of give me a road map. It also helps to know that things can change with this disease, I really though I was becoming a hypochondriac as there seems to be different things that happen on different days, it is hard to wrap your head around. I have never been one that goes to a doctor, I kind of ignore things and wait for them to go away, only this is not going away. Where the depression is concerned......who do I bring that up with, the rhuematologist, or my PC? That is the other part to this, lol, it gets hard knowing who to tell about what.
Barbara, thank you! I will take all the hugs I can get at this point Part of me even feels guilty, I had never heard of Lupus before this, I had no idea people were dealing with something like this.
Welcome to WHL. I know this is a scary time but that is why we are here. Hopefully the people here will help you navigate this difficult path. Those above have given you wonderful information. Here is what I do when I go to a new doctor (although I make a list of questions for every doctor).
1. I write a one page (so it is brief) paper on my history. When I started feeling bad. What things have happened, etc.
2. I make a list of all of my blood tests that have come back "out of range". The doctor isn't going to go through all of the old labs but I want to make sure he/she sees the information needed.
I do NOT give these papers to the nurse. I give them directly to the doctor when he/she comes in because I want to make SURE they read it. If I hand it to them right in front of me they have no choice but to read it and then they have to look at me as a person.
Hope this helps a little. Take care of yourself and know that you are no longer alone.
Success is not final, failure is not fatal: it is the courage to continue that counts.
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trish, i live in australia.....
and things are different here.
i use my primary for my depression.
our health service also provide 6 free counselling sessions, if i use my primary.
there are lots of different pain diaries.
one of the best i have seen is by the American Pain Foundation, www.painfoundation.org
i have a pdf of there diary. but i am unsure how to post the document onto the site.
it is too big to add as a picture.
i am happy to email it to you if you wish.
or you can go to there site. they have a few samples to choose from.
it is really a personal thing.
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Thanks again Steve, I found it. this will be a big help to keep me focused and not rambling.
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I should have read your post before I posted mine because I see you have addressed the question of flare ups and gotten some answers to it. I also am not sure of what a flare up is and I to hate to pester the doctor if its something that will settle on its own. I agree with you its confusing to read about it online. I do think I have a good doctor that seems to be concerned and doesn't downplay my questions but, I have worked for medical groups for almost 30 years so I tend to never want to blow things out of proportion or over-react. Sometimes that means I don't address things when I should because I don't want to sound manic or crazy either lol. It is very reassuring to read that other people encounter the same things.