Today's just not a good day

I woke up with absolutely no energy at all I could barely lift my head. I just feel so sick when I walk my legs are so shaky my hands are so shaky. I drink coffee to try to help not helping I really have to talk to my doctor about this is making me so depressed I have just never felt this way. I don't have anybody to talk to about this because I can't talk to my mother about it because she gets really sad I can't talk to my fiance about it because he gets really sad I don't have any friends none that I'm close to you since I've gotten sick. Feel like complaining about it just makes other people said it makes other people feel the pain that I feel and I don't want my love ones to feel the same pain that I feel not they could anyway nobody understands it maybe some of you do. I know that some of you do feel the same way I'm only diagnosed with SLE lupus I don't know if there's more to it I hear a lot of people saying that they're diagnosed with several different things and I think I've only been diagnosed since Christmas Eve they're still running tests on me so they don't know everything yet I have an appointment on the 27th so in about 10 more days I could talk to my doctor I even feel bad telling him how bad I feel I'm just so sick of complaining I'm sick of hearing myself complain I know everybody else is sick of it too. It's like everything hurts all the way down to my toes everything and I don't even think I can explain it the right way my whole GI system is all messed up I can't eat any food and drink like a quarter of a protein shake yesterday I lost 20 pounds in 30 days which was okay I wasn't underweight to begin with I needed to lose weight this isn't the right way to lose it this isn't healthy I just can't stomach any food I feel so sick to my stomach and I don't know if anybody else feels that way with this that my tenants hurt and my muscles hurt and I just feel like a worthless complaining person who is just constantly sick I feel like I'm never optimistic like everyone says that you should be I thought this flare up there would be like a downtime to it you know at some point but it's just gotten worse and worse I went to a family reunion out of town I got really sick there and then we had to drive home and now it's two days after that and I'm trying to recoup from it but I just feel terrible OK rant done had to sit in my car and cry away from everybody to do these rants

11 Replies

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  • Me again.

    You are not a worthless person, You're resilience to whats happening to your body shows that you are very strong and worthy individual. Perhaps way too strong - as a lot of people would have gone to an emergency department with the symptoms you've been putting up with.

    Just my humble opinion but SLE is all you need to be feeling the way you are.

    The additional tests might be to determine how the illness is effecting you. It effects everyone differently.

    I've had a severe form of SLE for 34 years - and from this distance I really do believe your Doctors need to hurry up and start some proper treatment for you. You shouldn't have had to put up with this level of pain and illness for such a protracted period.

    Please don't restrain yourself regarding complaining to your GP. They need to know whats going on so they can pass on vital information to your specialist as things occur.

    Its possible they don't realize the severity of whats going on with you.

    What you consider might be a trivial thing, might end up being a vital clue for Doctors so please don't hold back over anything. They are being paid to listen and do their job. They are there to serve you !

    Complaining isn't really the right term. Its valid reporting of symptoms. And you're just as valuable and worthy of care as anybody else - perhaps more so now you have a baby.

    I'm really hoping the Doctor you're seeing is a good specialist who will check out absolutely everything - inside and out.

    Sorry. I know this isn't a cheery response.

    * But I'm pretty sure once you get proper medical treatment you'll be a new person.

    xox

  • No it was an intelligent response that was very helpful and real.I don't want sypathy. I want advice so thank you so much.

  • Hi Juliet,

    Just as a p.s

    On this forum you'll see a lot of people who have very different forms and mixtures of illness and Lupus that are different to pure SLE. Please don't let this bleak you out.

    Having had it for most of my life I know SLE is pretty much horrific and scary when you're in the middle of a flare and you have to make sure your Doctors are on top of all possibilities to prevent problems, but in between flares, 'which will be most of the time' you will most probably be pretty much next to near perfectly healthy. Perhaps just slightly more prone to fatigue - but that's it.

    This has been my experience anyway - and I have a lovely fast acting aggressive version of it.

    It can be controlled.

    xoxoxoxoxox

  • Is there any way you could show this post to your doctor on the 27th? I think it is an excellent description of your health,the way it impacts on your life and the way you are suffering from the physical and emotional side of SLE.

    As freckle 1000 put so well without all the details the doctors will have a harder job of understanding and treating you.

    I think I have experienced most of what you describe including the gastric issues and weight loss.

    Getting the right treatment for you as soon as possible is essential as it will damp down a lot of the symptoms giving you some quality back in your life.

    Please show your post exactly as it is to them and insist on something being done to start helping you.

  • I know I tell him how bad it is because he's a primary care physician even though he's the one that diagnosed me he said that it was lupus without a doubt and this is before I had any tests on I had the typical wish I had all of the symptoms and it did come on very sudden fast like all the sudden it was like it started with a cold and then I just kept that muscle soreness and then more symptoms just kept happening after that only have about 3 minutes with my doctor tops I don't have time to explain to him all of the things that are wrong because there's just too many I even wrote things down before to give to him and he said save it for your other dr. The one that deals with the lupus which I understand this doctor is very busy I mean he has patience on top of patience and he works 24/7 has no down time and he is the one that diagnose me and listen to me and didn't think that I was just a crazy depressed person he actually listen to me the good doctor

  • It sounds like your primary care physician is a good diagnostician but not very strong in the back up and support department.

    Its very true that the SLE information should be assessed and acted upon primarily by the specialist, not the GP. But if symptoms are out of control in between seeing your specialist, its your primary care physicians (GPs?) responsibility to contact your specialist and alert him that you're not getting adequate treatment.

    I currently have a GP who will ring my specialist while I'm in there with him - if he and I conclude there are any new concerns. This is good practice as it includes me in the interaction between the specialist and GP if necessary. He will also order new pathology tests if I have concerns that things are going down hill or strange new symptoms present themselves. If I have medication problems - (eg side effect problems) the GP will work with me to try and achieve the best outcomes.

    Recently I had to make a leap of faith and jump from a long term good diagnostician GP to another, perhaps less medically savvy GP - but a GP who was more skilled at communication & listening and more willing to do the run around ground level back up work that's required. Unlike most GPs I've had in the past, I've never felt rushed or pressured by him.

    My recently ex GP had superior medical knowledge in a lot (but not all areas) compared to the average GP - but unfortunately he considered it beneath himself to do basic things like fill in required forms, and 'respect' me enough to listen to me regarding small details that where actually very important - in order for him to practice preventative medicine.

    He was great with the big urgent exciting stuff that interested him, but not so good with the boring little stuff. eg. I told him I was bruising more. He didn't think this was important. Turns out it very much was.

    I am yet to find a perfect GP. But as you go along as an SLE patient you'll learn to recognize the strengths and weaknesses of individual Doctors and learn the assertiveness skills to compensate for their individual short comings. (this lupus support site can provide a lot of tips on this)

    As for your current primary care physician - its really hard for me to tell you whats best to do. But there's no rule to say you cant test the waters and shop around for a new one - see how it feels and then make a choice.

    *Three minutes is not at all an acceptable amount of time for an SLE consult. 15 to 30 minutes should be standard. 10 minutes minimum.

    I have lost count of how many times I have refused to get out of my chair when Doctors - (some of them Associate professors) - have been in a hurry and decided the consult was over by standing up and walking toward the door. You can temporarily stop them in their tracks by continuing to ask more questions or to just plain tell them - "Sorry - I'm not quite finished yet" - or "I'm having trouble expressing myself / or getting a point across, can we slow down ?" You might not be able to get them to sit down again, but you can slow down their progress toward the door. They cant physically remove you. : ) I've only ever had one rude walk out and a few frustrated raised voices. Not bad for 37 years worth of consults.

    *As a future reference - If ever your situation is extremely urgent and you cant get help from a Doctor - 'In no uncertain terms' - ask who is in charge of this practice, or hospital department - and say you wish to speak to them.

    Never worry about being obstinate, or wasting their time. Your health and life is so much more precious than the few extra minutes of their time. No matter how busy they are, they signed up to do the hectic well paid job they do. They have a responsibility toward you.

    Part of their job description is 'duty of care'. Unfortunately not all Doctors take this aspect of their job description as seriously as they should.

    Apologies if this all sounds a bit daunting.

    It does sounds like your specialist is on board with your care and that is actually the main and most important thing for you right now ! Don't be afraid of making full use of him. See if he would be willing to speak to you on the phone when needed (or perhaps even respond to e-mails ? - some very rare specialists do this)

    Please don't worry too much about the other stuff mentioned until your health has settled down ! - Just a bit of a ramble.

    xoxoxox

  • They did communicate when my pain had gotten really severe and my roomie doctor already knew that it was going to get really bad from the numbers I didn't feel as horrible as he said that I should feel well within three weeks from that I felt really horrible and I saw my primary care physician and he just upped my pain medication to twice the amount that I was taking and it does help because they're stronger of course so all the symptoms got worse my pain medication was changed and they did talk to each other at that point but that was months ago

  • ps. ring the practice where your Lupus guy works - explain the situation - and try and get an earlier appointment. Keep ringing if you don't have any luck the first time. Bombard them !

  • Anytime I do call the office and try to talk to him I'm talking to him through a nurse practitioner which then calls me back and she just tells me that he said that it's normal for lupus and normal for my numbers everything that happens they just blame it on the lupus which it probably is but that's all they say really they don't have any solution or anything to help you know I do have a good doctor I think that there just is nothing they can do you know beyond what they're doing probably I'm doing my part I'm trying to stay out of the sun completely honest why is a piece of paper from it LOL I don't have the energy to be outside anyways

  • Hi.

    Sorry, have to be quick.

    I just had a quick squiz at your older posts with the kidney stones and kidney, urine infection.

    Before I say anything more, I will admit to being a tad over vigilant about SLE and kidneys.

    Having said that, with that history you need a referral to a Nephrologist !!!!! who will keep an eye on your Kidneys. Either that, or next time you harrass your specialist - ask him whether he's been doing 'all' relevant SLE/Renal pathology tests and ask what were the results.

    These are Australian codes for some basic Kidney tests. FBE and blood film, Urine - M/C+S, Renal function and Electrolytes, Urinary Protein/Creatinine Ratio.

    If these Doctors aren't checking your kidneys on a regular basis just as a precaution- this might be a good indicator of whether you need some new ones.

    Again. Just want you to get some preventative medicine.

    xox

  • I do not have a regular urologist the one that I have is the one that just does the surgery for the kidney stones when they do those surgeries they do check how your kidneys are functioning might seem to be functioning okay my protein levels and other things like that were really messed up and they didn't know why until they found out that I had lupus which apparently explained all the labs and why they were the way they were I believe I do need to find a doctor for my kidneys low because of the amount of infections and stones that I have and all the scar tissue

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