New Here...worried I have Lupus
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!
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.
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
feeling of being bone-tired
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?
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. 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 .
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.
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.
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.
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.
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?