View Full Version : You probably get this a lot...

06-26-2011, 08:28 PM
I haven't been diagnosed with SLE or anything beyond PCOS and hypothyroidism. Last year I also became bipolar 1 and suddenly developed anxiety problems, though that probably isn't important. I started having fatigue a few years ago. Then I started having stabbing chest pain when I would breathe. It came in spells. Usually it would be on the left side but sometimes on the right. I would breath shallowly to lessen the pain. A doc told me it was anxiety and gave me Xanax and klonopin. I wasn't anxious at the time and the benzos did not ease the pain at all. The pain had even woken me up a few times.
The fatigue and sleepiness is the worst. I fell asleep during an exam after 10hrs sleep that night. I went to church to see my brother preach and I fell asleep. I tried so hard to stay awake and my mother nudged me awake a good 20+ times. Every 30 seconds or so. I'm fed up with needing 16hrs of sleep a day.

Then my hair started falling out like crazy! My hypothyroidism is under control so that isn't why. My hair has gotten very thin. I went to get my hair cut and the stylist asked me if I had a health problem causing my hair to fall out.. Without me saying anything to her about it.
I have joint pain in my hands mostly, but if I stay out in the sun for a long period of time, my face turns red temporarily, I ache at every joint, and I'm exhausted beyond belief. I also have started getting huge bruises from the tiny shots I have to give myself. I bruise very easy. All these things and I'm still afraid to tell my new doc for fear he will think I'm a hypochondriac or something.
Does this sound like lupus and are these symptoms worth mentioning? I can't stand the sleepiness anymore. Sleep apnea has been ruled out by the way.
Thanks in advance... I have a doc appointment Tuesday and I'm just a little scared to tell him.

Edit: by the way... Something odd happened. I got a cat scan and had an allergic reaction to the contrast. They gave me a shot of steroids. Went to bed that night and woke up the next morning feeling great! I had energy, could think more clearly. That makes me wonder if something autoimmune is going on.

06-26-2011, 09:16 PM
Hello and welcome to WHL! Below I am going to post a link to a thread here that gives the criteria for diagnosing Lupus. You don't have to have them all. You simply have to have 4 with all other things ruled out.

Criteria for Diagnosing Lupus (http://forum.wehavelupus.com/showthread.php?2592-Criteria-for-Lupus-Diagnosis)

You mentioned the depression and the bi-polar issues and dismissed them as not being important. Actually that happens to a lot of patients with AI issues. Just as the diseases attack the rest of your body it can attack the brain and or simply alter the chemicals which can lead to depression and/or anxiety. Although I am not a doctor I can tell you that many of the symptoms that you have could be due to an Autoimmune disease but all other things must be ruled out. The fact that steroids helped you is a sign that most doctors would look at because steroids don't work on everything.

I would suggest that you go to a rhuemy and have a list of everything that has been going on with you. I would also take a copy of all of your test results that have come back "odd". Don't give it to the nurse. Hold on to it and hand it directly to the doctor. If it is in his file he can glance over it but if you hand it to him he has to actually read it!

Once again welcome to our group and feel free to ask as many questions as you want. There is great information found in the different threads so feel free to go through them or simply start new ones if you wish. I really look forward to getting to know you and welcome to the family!

06-26-2011, 09:21 PM
Welcome Catecholamine. I'm relatively new to the group, but it seems there are quite a few folks who drop in to ask "could this be lupus?" There is come great information already posted in the "stickies" and you can search the threads for things that interest you and get even more info. Mostly, the folks here are great cheerleaders with big ears and shoulders (for listening and crying on).

The doctor thing is always tricky. Most of us have been told "it is all in your head" "you are crazy" "you are depressed" or "you just want attention." In reading your story, though, there are issues that really need to be addressed. Have you seen this doctor before or is he/she brand new to you? Making a list of all your symptoms and any questions that you want to ask is a good idea. I hand the doctor that list when I go in with a lot of concerns. There are three advantages to that. 1) It has to go in your chart, so the doctor can't deny later that you told him/her 2) They have your list in front of them when they dictate/write their notes 3) You can't chicken out about telling them something that you have written down. I personally would start with the symptoms that the doctor can actually see - hair loss, bruising... You might try falling asleep during the appointment, just for good measure. Maybe take a note from your mom about you falling asleep in church LOL.

Lupus can affect the brain and cause symptoms of mental illness. I recently realized that the anxiety and depression I have been having is better since I started an experimental drug for lupus. The stabbing chest pain could be pleurisy, which is common in lupus. The fact that the steroid shot made you feel better is an important piece of information for the doctor. As you read through the posts here, you will see that many doctors insist that your ANA (a blood test) be positive and a certain pattern in order to be diagnosed with lupus. That is not true, as long as you have at least 4 of the 11 criteria. There is a sticky note listing those. It sounds like you already know a lot of this.

What do you have to lose by talking with the doctor about this? Do you have the freedom to find another doctor if this one doesn't listen to you or is a jerk? If he/she doesn't check things out, they probably aren't going to be a great choice in the long run. Just my opinion. Good luck and let us know how things go.

06-26-2011, 11:32 PM
Welcome Catecholamine,
i am not a doctor, but listenning to your symptoms, it would appear that something is not right.

i suggest that talking to your doctor is a good thing.

as the others have said, take a list. i do when i have issues to discuss.
otherwise i forget things untill i close the door behind me, then i remember everything i forgot to ask...............too late.

06-27-2011, 02:38 AM
Hi, welcome to our great group of people who hear you and validate your symptoms. I feel so badly that you have suffered as you have. The chest pains, mental health symptoms, pain in wrist, hair loss, etc. Are all the ways I presented early in my journey with SLE & thyroiditis. Did anyone ever test you for antibodies attacking the thyroid? Hoshimotos thyroiditis is common in SLE.

I want to encourage you to write everything down but also take someone with you if you can. I have seen my folks I serve in the mental health work I do, treated poorly. Everything is blamed on the mental illness and physical health care goes down the drain. Mental illness symptoms were the hardest for me to accept, but I thank God I at least know now. If the doc starts to blow you off, state clearly that you would like a referral for a rheumatologist anyway. Whoever deals with your thyroid(should be an endocrinologist), ask them for the test to see if autoammune is attacking the thyroid.

I'm sorry if I sound like I am ranting but many of my clients suffer needlessly unless I stand up to the docs for them. Again welcome to WHL Cat. Hope your appointment goes well.

06-29-2011, 01:37 AM
Well, I saw my doctor and I unloaded the symptoms. He listened to my lungs/heart and for some reason decided to start me on an inhaler because asthma could make me "feel pretty crappy". I used it and....nothing. I noticed nothing at all.
He ordered some blood tests, but I'm pretty sure none of them are ANA or anything related. Just thyroid, kidneys, liver, lithium levels, glucose, and testosterone (cause of my PCOS).
I mentioned the steroid thing and he says everyone feels better after a steroid shot. I didn't know that. Too bad it isn't a viable long term treatment for things.

I'm only 22. I'm too young to feel this crummy and ill. I just feel unwell.

I don't know where to go from here. I'm worried he wont check ANA or anything like that on his own without me saying something, and I'm afraid to say anything about it because I don't want to sound like a hypochondriac. I want him to come to the conclusion on his own. Part of it is because I've only seen him 3 times before. But he's a nice guy and spends plenty of time with me and doesn't rush me even though I have Medicaid and he doesn't get paid worth a darn for my visit.

I haven't done a lot of deep research into lupus. Are you more likely to have it if you have other autoimmune disorders? I suppose that it's possible I have Hashimoto's - no one ever checked. I was seeing a nurse practitioner and she caught the thyroid levels on my yearly checkup and put me on synthroid and that was that. My mom has Hashimoto's....and RA...and other autoimmune things. So I guess it wouldn't be a shocker if I had Hashimoto's disease.

I go back to see him in a week. I don't know what to say to him. I'm a bit disheartened. Oh well.
Thanks for the replies. Also, tgal, I've not had that much bloodwork done beyond the basic things. The only things that were odd that I was told is, when I was seeing a crappy nurse practitioner, she told me that my creatinine was high. There was no reason for it to be but she just said "huh" and never mentioned it again or checked anything. She also said my platelets were high. I also, for the first time in my life, have had issues with anemia. I eat plenty of red meat and whatnot so it isn't a nutrition issue, and at that point I had already stopped having a period due to PCOS so that wasn't it either. It got so bad I had to have a blood transfusion...which is ironic because I used to give blood all the time. The doc in the hospital urged me to see someone about it because something was not right, but I never really did. He told me once to do it then came back 5 minutes later to say "Really, I mean it, PLEASE get it checked out". Shows how much I listen. I don't know if any of that was important, though. He probably has my records. If he requested them. I don't know...I have a lot of records from being in and out of mental hospitals for a year when all the mental health issues reared its head in a very ugly way. So the info could be buried under mountains of records.

06-29-2011, 02:48 AM
HI Cat, so glad to hear from you again! Your words bring tears to my eyes. First let me tell you I have an adult child with bi-polar and I work in psych rehab. Here is what I think I'm hearing you say, & if I'm wrong please forgive me as we have not talked long. Folks who have mental health problems are almost certain to receive poor medical care because everyone they see blames it on the mental illness. Guess what ...YOU ARE RIGHT! I have witnessed it over and over with my boy and the folks in my program. I would like to give you some advice. I don't know where you are from but here in the USA , we have advocates & peer supporters whom the state pays to help advocate for you in medical and mental health situations. They can go with you and make sure you are able to speak your mind and be heard.

I took a woman who was known in the ER for panic attacks, to be seen for severe abdomenal pain. I saw the condescendingly way they treated her. I stood my tallest(grin), and spoke my most professional voice and all of the sudden all kinds of tests were ordered. Guess what? She was very sick.

I'm glad the doc did something. This a start, but please hear me when I say you must find someone who will walk with you to these appointments. Advocates are free here. Someone from a church may help you. A friend or relative.

Don't be hard on yourself for not getting the blood issues dwelt with. Mental illness has a way of distracting us from taking control of physical issues. Stay in touch with us here and pm me if you want to talk privately. If I know which state you are in I can help you search for a support network. Bless you dear as you battle mental and physical issues. I have depression from the lupus and it is rough. (((hugs)))..

06-29-2011, 03:38 AM
I have 2 caseworkers that come from the local mental health center to my home to see me every week. They would go with me if I asked, but I could never do that. At the last appointment, the doc didn't even bring up my mental illness and I'm hoping he wont. The sleeping isn't from depression - I know that for sure. I haven't really had the soul-crushing depression so much since I was put on lithium a few months back, but when I was depressed, I WANTED to sleep...to escape. Now I want to be awake, want to have energy, want to do things, but I'm too tired. Fatigued AND sleepy. I'm really worried about school starting back in the fall. I can't stay awake in class or even during tests. It's SO disrespectful to fall asleep in class! I hate it!
I'm still scared they won't find anything and that they'll tell me it's just psychosomatic symptoms.

06-29-2011, 03:55 AM
I was a case worker. Ask! You have nothing to lose by asking dear. If they can go, they will. If they can't they won't. You are worth it dear. Please ask. (((hugs))). You can even have accommodations for your educational needs if you get an advocate. Value yourself dear. You are awke from your slumber. Fight for your recovery dear.

06-29-2011, 05:05 AM
I don't want them to come with me to be honest. I don't think I really need them at this stage. The doc is at least looking at things, although asthma seemed a little far-fetched to me. I dunno, maybe he heard something when listening to my lungs. He didn't say.
As far as educational accommodations, I can receive extra time on tests if I so desire (due to ADHD), but I rarely use it. It's hard to think when you can't keep your eyes open, no matter how much time you get. I actually don't remember much of my Physiological Psychology final - I would scribble a few words, sleep, read what I wrote and write another word, sleep - I barely turned it in on time. The only reason I did is because for the first 20 mins, I was okay...then all the sudden, boom, I was out.
I feel kind of weird talking on a lupus forum when I don't even know if I have lupus. A lot of the symptoms match up but it could be something else entirely. I'm afraid that there's nothing they can do and I will have to continue living this way.

06-29-2011, 05:21 AM
if your doc is doing the right thing, then good.
ask for a copy of your test results.
keep them for further reference.

there is 63 auto immune disorders.
a lot of the symptoms overlap.
so the doctor is probably trying to rule in or out lots of things.
asthma medication will not hurt you if it is not needed. so using it is at least starting something.

i would mention some of your past to your doctor. it will make his diagnosis easier. and he will appreciate the honesty.
you have told us, and dont really know who we are. so telling him should be an option.

please stand up for yourself.

06-29-2011, 05:27 AM
I can understand that you would feel weird being here but since there is so many red flags for it, you might as well just hang here and be loved on until you know for sure. Steve says there are 63 autoammune diseases. Wait and see and try to learn all you can while here. I'm sorry you don't feel comfortable having your caseworkers go with you. I would want to advocate for you if you were here(smile).

Once hugs hear from your doc, if you feel you want a rheumatology appt. Ask and see how it goes. If you want statewide advocacy, I can help okay? You decide the direction you want to take. I'm here and promise not to steer the ship, but its like holding back wild horses for me. Lol I advocate for lots of folks plus my boy. Can you tell? Tehehe.

06-29-2011, 06:02 AM
LovedbyHim is an incredible woman and I highly value her opinion - especially since she is an expert in the mental health field as a professional and a mom. However, I really understand your reluctance to take along a case worker if the doc isn't making this about your mental health. I actually think that is rather profound. I can see your concerns about bringing an advocate along and I would be thinking the same thing if I were in your shoes.

Did you tell the doc about the anemia and the high creatinine? How about the family history of RA and Hashimoto's. Your doctor is taking you seriously, so make sure you are giving him all the information he needs.

It sounds like you are taking tough classes and are highly motivated. I have found, with my daughter, emphasizing her goals and the difficulty of her coursework - and how she couldn't make it through the school day now - brought doctors over to her side. They could relate because they were generally overachievers in school and didn't want her to waste her abilities. If I were in your shoes, I would make sure the doctor sees you as a highly intelligent, motivated young woman who has managed her bi-polarness well, but is getting kicked in the butt by this unknown illness. As you said, maybe it's AI, maybe not. Severe anemia can cause profound fatigue. That should show up on the labs he did. Please keep in touch to let us know what happens.

06-29-2011, 06:10 AM
I've been using the inhaler every 4 hours or so like it says. I figured it couldn't hurt. I'm limited to 5 prescriptions a month because I'm on TennCare (my states medicaid), but inhalers are on the exemption list so it doesn't count as one of my 5 and there's no copay, so there's no harm in trying it.
Maybe when I see him next week, I'll at least ask for an ANA test to see if I have Hashimoto's or just regular hypothyroidism. I couldn't straight out ask him to check me for lupus - I would hate to be wrong and look like an idiot, haha.
The main reason I dont want one of my caseworkers to go with me is I think my doc with think less of me for it. He might be insulted even. The doc is a good guy and I think he would listen to me if I could feel comfortable telling him things. I just...don't....not to anyone, to be honest. I didn't even tell my family about these issues till I went with my mother to visit my older brother and his newborn son. I slept long hours, she had trouble waking me...I slept in the car, no matter how short the ride...and she would wake me up and I'd fall back asleep within 15 seconds or less, over and over and over, no matter how hard I tried to wake up or how many times she called my name or shook me. She gave me a stern talking-to about telling my doctor about the issues I've been having. Lol.
As far as seeing a rheumatologist, that would be a little more tricky. Not many docs around here take crappy TennCare - and if they do, they have a waiting list months long.

I mentioned the high creatinine once in passing on my first appointment with him. I doubt he remembers. I was only using it to emphasize how bad the nurse practitioner I had been seeing was - she ignored test results. I also mentioned the anemia in the first meeting, I think. I don't think I'm anemic right now, however. I had some bloodwork done not long ago and I was okay. I never told him about my family history. But I will try to do so and I'll emphasize my concerns about school. I really don't know how I'm going to do it this fall - my classes are even harder. I have a pharmacology class and a class called Experimental Research & Design - it's essentially a mini-thesis, preparing us for our thesis that comes after.

06-30-2011, 05:46 AM
Hi Catecholamine,

I've missed your thread and that's unusal for me but a lovely warm welcome to WHL and i hope your enjoying the site already as we're a smashing bunch of people and will help in best ways possible.

I have hypothyroidism and Bipolar like yourself..they're controlled the best they can be.

Your care workers can get you in quickly to see a rheumo, as i used to have care workers and people from a mental health team involved with me years ago and if you need help they'll soon sort it.

It's will be nice getting to know you Terry xxx

06-30-2011, 03:09 PM
Thanks everyone.
Well, I can now say for sure it isn't asthma! Not to mention that I've never had issues with shortness of breath or wheezing. I've been using the inhaler every 4 hours like it says and if it wasn't for the taste, I would think there was nothing in the inhaler for all it does. Doc said it would make me jittery....it doesn't even do that. It does nothing whatsoever. I knew from the beginning it wasn't asthma but it's still kinda a letdown. At least I'm supposed to see him again next week and not 30 days from now.

06-30-2011, 03:47 PM
Hi Catecholamine,

I just wanted to reassure you that having Lupus never has been, nor will it ever be a membership requirement here. In fact, a good portion of our efforts here are aimed at helping those who do not yet have a diagnosis, but suspect that they may have Lupus. You are more than welcome to post and participate here whenever you like.

One bit of advice I'll give after reading your posts, is that I think you should be specific with your Dr., and ask to have an ANA test because you honestly believe that Lupus may be causing these symptoms you've been enduring. If your suspicion turns out to be wrong, it does not make you look like an idiot. It makes you look like an informed patient who is eliminating various possibilities in order to get to the real root of the problem. Don't be afraid to be assertive when it comes to matters involving your health.

Anyway, I also wanted to say welcome to our group. Make yourself at home!


06-30-2011, 03:52 PM
I've been on inhaler's for years and just been tested for 2 lungs diseases but failed the tests through my lung capacity being to low so they've got me on another steriod inhaler...if you have no shortness of breath or any issues with your breathing you should'nt be taking them and i don't want to frighten you but my nurse told me if you ever get the shakes then your taking to much in a day and it's like a form of over dosing but where your doctor got jittery from i'll never know and i'm no doctor myself but that's a first on me.

I would address your doctor about it because if your ok you should'nt be taking them really.

((Hugs Terry)) xxx

07-01-2011, 04:17 AM
I looked it up online and it looks like the jittery feeling does happen sometimes with normal use. But I don't get it so it doesn't really matter I guess.
I'm frustrated right now because, shortly after waking, I started having the chest pain again. Breathing hurts pretty bad. It doesn't hurt quite as bad if I breathe shallowly. I'm pretty sure asthma can't cause chest pain, but I used the inhaler anyway. And, of course, it didn't do anything. I hadn't had this happen in almost a month... I was hoping it had gone away permanently, but obviously that was just wishful thinking.
I'd be frustrated to tears if it wasn't for the fact that I don't cry.

07-01-2011, 06:42 AM
Maybe you should call your doctor and leave a message that you are using the inhaler and that it isn't helping at all with the chest pain. You should also let him know that it hurts more to take a deep breath. Has he seen you when you are having the pain? Maybe you could get an appointment today and talk to him in person?

07-01-2011, 08:44 AM
I looked it up online and it looks like the jittery feeling does happen sometimes with normal use. But I don't get it so it doesn't really matter I guess.
I'm frustrated right now because, shortly after waking, I started having the chest pain again. Breathing hurts pretty bad. It doesn't hurt quite as bad if I breathe shallowly. I'm pretty sure asthma can't cause chest pain, but I used the inhaler anyway. And, of course, it didn't do anything. I hadn't had this happen in almost a month... I was hoping it had gone away permanently, but obviously that was just wishful thinking.
I'd be frustrated to tears if it wasn't for the fact that I don't cry.

That sounds like a problem I have called Costochondritis. It's inflammation of the connective tissues of the ribcage. It can hurt like the dickens, but it's a fairly benign thing. I take the NSAID Aleve when it flares up.

However, I do agree with Gizmo about talking to, or seeing a doctor. Better safe than sorry when experiencing chest pain.


07-01-2011, 08:49 AM
That sounds like a problem I have called Costochondritis. It's inflammation of the connective tissues of the ribcage. It can hurt like the dickens, but it's a fairly benign thing. I take the NSAID Aleve when it flares up.

I was thinking pleurisy, but costochondritis is also a good possibility. I haven't had the joy of experiencing that, so it doesn't always come to mind. I'm sorry you are so familiar with it, Rob.