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View Full Version : New Here...worried I have Lupus



spiritsolace
04-07-2005, 01:50 AM
Hi, Like I said I am new to this board. I have been experiencing extreme fatigue for the last 2 months with mild fatigue for the past roughly 8 months. I have also had achy knees and hips off and on for the past 6-8 months. I've had blisters in my mouth, and photosensitivity. For the past week I have been in total misery. In addition to the fatigue, I am having more frequent asthma attacks, and severe coughing. I went to the ER the other night because I could not stop coughing and my inhalers weren't helping.

I am not working outside the home right now, thank goodness, because on the average day I am not able to do much beyond lying on the couch and sleeping on and off. Any physical activity leaves me exhausted. My Dr. has at least humored me by running some tests. He has found that I am anemic and that my thyroid is off. I also have a positive ANA result, but don't know the details because for various reasons too complicated to explain he has not recieved the full paperwork yet. He is referring me to an Endocrinologist and a Rheumatologist (somewhat begrudgingly), but he really thinks that I just have a bit of bronchitis and am anemic. I am sorry, but I have been asthmatic for years and am schooled in brochial infections. I know what a normal one feels like... and this is not it. I feel much more ill than that. Plus, my girlfriend (a self-described "bug magnet") has not gotten sick and she would have by now if it were contagious!

My mother has rheumatoid arthritis, so that was what I suspected at first but then I looked into the other autoimmune disorders, read about lupus and a lot of it sounds like me. So I guess I am posting here hoping for some support and suggestions, especially if any of you know what this coughing could be about. Also, any ideas for how I can expedite the process of getting a diagnosis would be really helpful. I can't handle it much longer!

TracyDawn
04-07-2005, 05:46 AM
Sp[rit,
I am so sorry you are now on this awful roller coaster. I KNOW how frustrating it is to have to fight your dr to get anything done, or to find out why you feel so bad. Unfortunately I have been on this coaster for 7 years now and still don't have a final diagnosis from a Rheumatologist. I have an appt in a couple months (hard to get in to them here) but my primary dr IS convinced it's SLE. If you need to talk I am here.
Like I said I do know what it's like to fight for an answer. I really lost it in my last drs office because I was getting the run around and finally told them where they could shove it. :shock: Then I called my insurance company and reported them and had them change my dr THAT day versus waiting the 2 weeks it normally takes. (Turns out I wasn't the only one having problems with them) A week later, after I have seen my new dr and had new tests ordered and gotten shots in my hips for the pain there cause I could barely walk, I got a letter from the old dr saying they could no longer provide care for me. We got a big kick out of that cause if they had provided care to begin with we wouldn't have had a problem. Anyway I guess what I am saying is, if you are really having to fight your dr I personally would find a different one. You have enough to deal with and don't need the added stress of having to argue every time you feel bad with the one person that is being PAID to help you find relief and answers. But that's just me. ;)
I hope you are having a better day today, and like I said I'm here if you need to talk.
Tracy

hulagirl
04-29-2005, 09:09 PM
Hi, welcome to the forum. I am sorry that you are experiencing pain. The hardest part is waiting sometimes. The only thing I can tell you, is find a doctor who really listens. I went through multiple doctors who had their own ideas about what was going on with me, without ever really listening to me. If your Doc was reluctant to even send you to a rheum. sounds like s/he isn't doing their job. Good luck and best wishes. Stick to your guns, and don't stop asking questions. Love, Maya

trishab
05-27-2005, 07:46 AM
I have had this feeling of being "bone-tired" now for over a year. I have had hypothrydoism for over 15 years, and my thyroid is fully supressed and I am on medication for that. All is well there. However, on stressful days, I get so red in the face it lasts for days, I am so very very tired all I want to do is sleep, my hip hurts, my eyes are so dry at night I have to wear one of those little eye sleep thingys, I have an almost constant headache in my left temporal (sp) lobe and my doctors seem to think I need to change my glasses prescription. Which I have and no help there. I also have tingling sensations in my cheeks and cramps in toes and calves. I get ulcers in my mouth and in the cracks of my mouth. My skin itches all of the time and I get these red whelps. I really am thinking that I am such a complainer, and just a very lazy person -- but I never have been before. I don't seem to be depressed, just very very tired. My doctor finally tested me for Lupus and I am awaiting those results. Does any of these symptoms seem to sound like Lupus to anyone?

Evenstar
05-27-2005, 08:06 AM
Hi Trishab,

Firstly you are not a complainer. No one wants to be in pain or tired you are just expressing your feelings to people who understand what you are going through. :D And your not lazy, if you are fatigued your body is responding to it by telling you that you need rest.

well speaking from personal experiance i can say that I am realting to your symptoms right now. I know of the bone tiredness that you are speaking of or that running yourself into the ground feeling as i like to call it.

One thing that interested me was the redness of the face thingy. I get that too although not when I am stressed. I was thinking recently that it happens when my body is stressed, what i mean is if i come over suddently extemely fatigued or the pain worsens. It normally lasts several hours, but i normally expect to get it at some point each day. I go from being a grey pale colour to bright red in minutes. my rheumy said it is a sign of inflamation in the body.

Does your body burn up too with it, my legs burn like mad and all i can think of is getting home to rest. Feeling like this right now so I wanted to write :wink: .

take care

carly

trishab
05-27-2005, 08:13 AM
Thank you, Carly, for replying --- It makes me feel better to speak with someone that understands. My rash on my cheeks and nose comes on immediately and yes, from being pale one moment to being red as a beat the next. My face feels really hot as well. It also happens when I am outside. I live in Louisiana and the heat here is really bad. I used to be able to lay outside and tan for days on end -- but now I can't even be outside (in the shade) without become so red and tired and out of breath that I have to go inside. I was outside for 20 minutes a couple of days ago and my face stayed red hot for about 9 hours. Also, if I have itched a spot and it has become red and raised, it usually is very hot as well. Do you have those symptoms too?

Thanks for responding to me.
Trisha :D

Evenstar
05-27-2005, 08:44 AM
Hey no worries, it helps me to no end to speak to people whom as you say understand.

well i live in the UK which as you can imagin is not very hot here. I would say that maybe my symptoms are similar to what you described. I do burn up in the heat in my face and all over. I used to get very sun burnt as a child on holiday, and now i cannot tolerate the sun at all. When it is hot i always tend to be hotter than anyone else and have to sit down otherwise i get all weak and shaky.

Yes, if i itch the area does become hot and raised.

When do you think that the doctor will have your results? Just for information purposes, my doctor considered every angle before a final diagnoses, what I mean is it wasnt just based on blood tests. It was based on the critea and medical history etc.

trishab
05-27-2005, 08:53 AM
Carly, I should get the blood test results next week, after next Tuesday, and we will go from there. I have no idea what will come of it. My doctor says that if the blood test doesn't show anything then he will treat me for "depression". I just don't think I am depressed, but maybe he knows what he is talking about. I can't imagine how depression can make your face breakout in these red splotches, etc., but I guess depression can do many things to your body. I also had an MRI about a month ago and it showed arthritis in my neck. I have read that arthritis is another symptom of Lupus. I have no idea what will come next if the test shows some indication of Lupus. I am so new to this.

Thank you for your input though. I really appreciate your time.

:lol:

Evenstar
05-27-2005, 09:01 AM
Trisha,

I can relate, my first doctor was bang on for blood tests and when something did show up I was diagnosed. However she couldnt treat me and referred me to a lupus specialist, he looked at everything going on not just what was in my blood count. It made all the difference I can tell you.. Some of the classic lupus test came up for me as negative. I hope you have some luck with them.

Maybe it could be the arthritis causing the burning up. Like i said my doc says it is a sign of inflammation in the body. But too true that arthritis is a side effect of lupus however I have a diagnisis of both??? I know it's confusing.

I have probably managed to confuse you even more, i have managed to confuse myself thats for sure LOL.

Carly

trishab
05-27-2005, 09:08 AM
No, Carly, you haven't confused me -- just made me feel a little better about things. Maybe this is not all in my head. I appreciate your time. Believe me, I am thankful for any information at all.

Your diagnosis is Lupus and arthritis? How long have you had it? Do they give you meds to combat the sumptoms?

betsybailey
05-29-2005, 11:24 AM
Coughing and fatigue sound like pleurisy. Make sure your new rheumy see's the x-ray if there is one. Also, get tested for Antithyroid antibodies. Just got diagnosed with that one myself. Once the meds for that kick in you'll feel better. The pain sucks I know I was very active before this all started for me know I just do yoga, which I suggest for everyone here. It really helps with the muscle aches and make you just a little stonger to help ease the joint pain.

Hips are a weird one to start with...my suggestion is make sure your rhemie has seen at least one lupus patient before. Some haven't or haven't diagnosed them. It'll get easier.

silverlioness
05-30-2005, 10:41 PM
My knees and hips hurt all the time. My hips will hurt in spurts. My left knee now has a chronic ache that won't go away.

Evenstar
05-31-2005, 05:09 AM
Hi Trisha,

Hope you had a nice long weekend and are feeling better today.

regarding your question, I was diagnosed with lupus coming up 2 years now and the arthritis about 6 months. There was talk of arthritis before I was diagnosed with lupus but the docs put that on the back burner and now they tell me I have it.

I am on Sulphasalazine which I am told is a second line drug used to reduce inflamation in the body. It is very good for the sacroliac joint and bowel inflamation and these are mainly the two worse areas I experiance it. I do get the hip pain too that you mention and it does wear you down i know. I also take diclofenic as an anti-inflammatory, after trying most of them I find it the best although it aggrevates my tummy probs LOL you cant win.
:lol:
take care
Carly

trishab
05-31-2005, 06:46 AM
Carly, thank you for asking, I had a good long weekend. I hope you had a nice one as well. Do the meds seem to help you much? Do have spells when you feel more tired than others? And days when you arthritis flares up or hurts more than others? Do they corolate with each other? I guess I am trying to find out if there are days where you feel pretty normal, and then others when you feel the onset of the very tiredness, aches and pains with the arthritis, headaches and rashes? And if so, how often do they occur? Also, does the meds help with the onset of those episodes?

Did it take them a long time to diagnose your Lupus? My symptoms really began 1 1/2 years ago and they just said that I must be depressed. Although, I don't feel depressed, my doctor said that if these tests do not show any sign of Lupus that I "must" be depressed and he will treat me for that. Does that synario sound very familiar to anyone??? I am just frustrated and want to feel better. Any suggestions?

Evenstar
05-31-2005, 07:04 AM
Hi Trisha,

glad you had a good weekend, I had a nice one too.

Hmm, no i cannot say that I feel normal on any days. I just have days where I feel worse than other days or like you say periods of where the pain and tiredness etc is worse than others. I also have times where I can feel a worse than usual flare up on the way which would put me out of action for longer. The new meds I am on have worked the best so far although i am a long way off from feeling well and being able to do what I want with my life. I have begun to believe now that the docs will never be able to help me as much as I would like. Sorry that probably sounds very negative. My family are inclined to think that one day I will try a med that will make me well forever. If only hey?

I have had symptoms of lupus since i was a young child but was dismissed with migranes and growing pains. Healthwise, things got worse for me a couple of years back and I was diagnosed a few months after. I know myself and from reading peoples stories on this website that they have had trouble with their doctors. I have a feeling you may be experiancing the same. Obviously I dont know as I am not medically trained, in my opinion I cannot see how depression would bring on some of the symptoms you have? maybe you could think about getting a second opinion if you feel that would put your mind at rest.

trishab
05-31-2005, 07:27 AM
Carly, how long has it been since you haven't felt well at all? Are there various degrees of this disease? And if so, does it get worse as the years go on? Do you just have to keep changing meds to try to feel better? Surely there is some sort of test study or something that is trying to find meds that will give you some relief at least at some periods of feeling "normal". I just hate it that you never feel like a normal person. That just doesn't seem fair, does it? With all of the medical technology out there --- it just seems as though someone would come up with some medicine that would treat the feelings of pain and tiredness for Lupus suffers. If they can beat Cancer --- it makes you wonder where the researchers are for Lupus >>>>

I just know that something will be done to make you feel better --- it has to come very soon. How many times have they changed your meds? Do you just keep trying new things? There are just so many questions I hate to bother you with them --- you are very sweet to listen to me. I just wish I could make you and other Lupus sufferers feel better.

I am awaiting a call from my doc about my blood tests of last week.

Trisha in Louisiana

Evenstar
05-31-2005, 07:42 AM
Trisha, well I would say that it was around the time of my diagnosis since I havent felt well since. It is difficult and frustrating, but still I have inly had scares of serious organ involvement. I consider myself fortunate that I dont have any serious organ involvement at this time. Yes I have tried lots of different medications, some have been better than others but they have interferred with my liver. The sulphasalazine has given me more energy and mobility, but they higher dose was causing damage to the liver. Very ironic I think. :? I am looking at alternative remedies and therapies now in hope they give me that little bit extra to stop that constant feeling of wearing myself into the ground. :D

well hopefully you will get the results from your blood tests very soon to put your mind at rest. If you have questions just ask it is no trouble at all. :wink:

take care

carly

DakotaBlue
08-13-2005, 01:26 PM
spirit Solace...
I too have a never ending cough.....and have been tested for everything.... with no positives
have you found a source for your cough yet? how did you get rid of it?