New and ignorant

Hi,
First off I want to say how thrilled I am to finally find some subjects with ITP and lupus together. I don't feel so alone suddenly. But I am sorry that you are here.
I have been complaining about pain since I first stopped using prednisone after 18 months in 2003 for a kidney disease. My nephrologist sat me down, showed me the lab work, and taught me where we were going as a goal. Later he found a positive ANA, and in his notes mentioned to look into it. But then he retired. I also was diagnosed with diabetes, high blood pressure, and borderline glaucoma. These went away once my kidneys went into remission and I quit taking prednisone.
I started to see my PCP about the pain, and got to a rheumatologist, and without looking at anything he decided I had fibromyalgia, even though he never looked for a tender spot. And I found that he didn't have time in his life to treat a person with fibromyalgia. (Several other people that I have talk to also said the same about him.)
Then I started a hyperthyroid. The endocrinologist would come into the room, look at my shaking, feel my throat, look in a book, write a lab slip, and tell me to come back in a month.
After going to several different PCPs I finally found one that said he would rather find the cause then to give a pill. So I tell him about my pain... Guess who got pills? But he gets so involved with explaining things to me that he sits in awe about profound his words were. I really enjoy him. (I think he is my sons age.)
The endocrinologist found issues with my platelets, and referred me to a hematologist. He said I had ITP without running further tests. He also got really irritated when I told him I wouldn't take more then 40 mg of prednisone because past use of prednisone at 50 mg made me psychotic. I find he would rather sit at the nurses station waiting for my CBC results then to actually spend time talking to me about what is going on. He shows me the CBC results, and tells me what dose to take, and leaves. Initally the CBC results were 13k.
I went back to my PCP and told him that they diagnosed me with ITP, and guess what? the endocrinologist and hematologist didn't send one note to my PCP, shock! My PCP said I had enough going on to suspect Lupus, so he ordered several tests.
I started forming blood clots too frequently once the prednisone got my platelet levels back within the normal range, and landed in the hospital. That is where I got the news that I did have lupus, by every doctor that visited me.
Now I have an appointment with a different rheumatologist. They sent me the initial paperwork to fill out. It asks for my education level, and my place of birth. Now I have to find out how that is related to my medical history. Looking at it I thought I was applying for a job with the government that needed a high security clearance. The papers has so much information that they are asking for, that I need a magnifying glass just to see it all, and it is six pages long using both sides. I hope that he will sit down and talk with me, or I wonder if he thinks he has so much information that talk is not needed. I will find out soon.
Now I ask you, how can I be a part of the healing process with doctors that won't talk to me about my treatment plan? Maybe I should start sitting in the room and refuse to leave until the doctors takes the time to talk to me, and allows me to ask them questions. Got any other suggestions?
I have read some posts, and it looks like I haven't a clue about the lab test results. This is going to be a wonderful experience.

Hi Rhonda. Sadly amusing story, and all too familiar. First of all, who confirmed Lupus? Was it a Rheumatologist? I'm asking because some GP's can jump the gun on that. Not saying you don't have it, just that the diagnosis can be handed out prematurely sometimes. You do seem to have a lot of the symptoms, I'm just wondering what labs correspond with the diagnosis. I am very familiar with labs, so if you have them, feel free to share.

I have been in your shoes. My first Rheumatologist was a joke. I'd already had the ITP diagnosis, and went to the Rheumatologist for horrible muscle pain and fatigue. He looked at me and said I was fine. Didn't run one test. Later that day I had an appointment with my Hematologist and staretd to cry because no one would take me seriously. I had already been seeing him for 8 years, so he knew me pretty well. He ran an ANA and C3 and C4. The ANA was elevated and the C3 and C4 were low. He referred me to another Rheumatologist.

The second one was better. I loved him. He ran some more specific tests and although I had a high SED rate in addition to the ANA and C3 and C4, I still did not meet the criteria for Lupus. He continued to monitor me every 4 months and helped manage the symptoms I was having. About a year later, I began having symmetrical joint pain. Another symptom, but still no true diagnosis. Six months after that, I had an office visit and for the heck of it, asked him to run an APS panel (Antiphospholipid Syndrome - the clotting antibodies). When the results came in, I had APS antibodies and a positive dsDNA - that clinched the diagnosis.

That Rheumatologist moved across the country, so I went to the next closest one 45 minutes away. She was too clinical and not personal at all. Oh well, she was available and I needed her. One day out of the blue I woke up, got in the shower and as soon as the water hit my legs, I had a pins and needles sensation that didn't stop. Neuropathy. I waited until my next Rheumatologist appointment to mention it. She very coldly told me that it was not Lupus related and told me to get tested for MS. I started to cry and she turned and walked out of the room. Appointment over. Having done research, I knew that neuropathy was a very common symptom of Lupus. She was wrong. I fired her.

Rheumatologist No. 4 - an hour away. This one is a keeper. It's an actual Lupus Center that does research. She sits and listens to me as if she had all the time in the world. If I ask for a certain test (and I do all the time), she will run that test. I have found out many things, such as low Vitamin D that needed treatment, from asking for tests on my own. We discuss medications and I suggest the ones I feel might help. She is always open to what I have to say and rarely turns me down. If she makes a suggestion, I tell her I will check it out and get back to her. She doesn't get arrogant or upset, just asks me to let her know. We e-mail back and forth and that is a great way to communicate.

So, my advice - keep trying until you find the right doctor. Lupus is tricky and it's nasty at times, so you have to have someone who is on top of it and knows their stuff. I would never see a doctor who didn't work with me. I expect to be treated with respect and I know what my body can and cannot handle. It can be frustrating to find the right meds (I'm still working on that after 4 years), but you have to be comfortable with your doctor.

You're not alone....we are here!

Hi Rhonda,
Welcome, although sorry to have you here, I'm glad you found us.

I have been lucky and only one or 2 bad experiences with doctors in the 25 years I've had lupus/ITP - I also have APS, a clotting disorder and have had several blood clots. DVT's in my legs and arms and PE's in my lungs and that was with low counts.

Good luck with the new rheumatologist, hope he works out and can help you. Drop back and up date us on how it went.

Kim

When I went to the hospital, I told the hospitalist that my PCP suspected Lupus. He said he was going to run all of the tests because once I am on blood thinners they can't do the tests. The next day a hospitalist came in to my room and said that the ANA and some other test (which I don't recall which test it was, I never heard of it before) both were positive for lupus, he also said some tests were not back yet. Two other hospitalist, the oncologist, and my PCP all said I had lupus.
To think that this maybe another misdiagnosis would be wonderful! But at the same time, I have lived in pain for over seven years without relief (even though I haven't tried morphine). I do recall a few months where I didn't have a lot of pain, and I was able to function after work. Other then that, the pain has been constant. I have been afraid to pick up my grandchildren, (that is heartbreaking to me) and I have been very thankful that no cameras was on me each time I got up off of the floor after playing with them. I have read about how the anti-maleria drugs has helped others. It would be wonderful to finally find something that would remove this pain. So stupid me, I hope that the diagnosis is right, so I may get relief. But hearing that you have been trying for four years to find the right medication is also heartbreaking. I am so sorry that it has been so long for you. Maybe it is all a dream that someday soon I will be pain free. But then again, who knows. Thank you for bringing this to my attention. At least I have more questions to ask the rheumatologist (if I ever get the chance).

Hi Rhonda,

I'm also really new to all of this- I was diagnosed with ITP and lupus on my 26th birthday, 2 months ago. Perhaps the other labs and blood tests run were for antibodies? There are some very specific antibodies that indicate lupus.

What kind of pain are you having?
For several months before my diagnosis, certain fingers and toes would swell up for weeks or months, with no range of movement. The arches of my feet were so sore and swollen that I could barely put any weight on them. My wrists were also very painful, but never swelled. It turns out that these are VERY common complaints in lupus.

The prednisone has really helped, but as I've been tapering down (from 70mg to 15mg now), the pain has reappeared of course. Well, I started 800mg/day of Plaquinil, the antimalarial, and I really am seeing a big improvement! So hopefully you can start on Plaquinil soon.

I really hope that your new doctor is everything you wish for- is the appointment soon?

Plaquenil is great for most joint pain, but will not help all Lupus pain. I still have problems with my hands and feet mostly, and also take a muscle relaxer, Vicodin, Prednisone, and Naproxen daily. I also just started Lyrica for muscle pain. Even with all of that, I'm never pain free, but it is better.

Today at work, I was thinking that it might be helpful if I managed to get copies of my labs, and maybe my hospital records. That would give me some insight. And after reading the new posts today I think it would be good to do a daily journal since my memory is really bad at this point. I was just keeping up with the doctor visits and medications, but if I can see an actual pattern it would really be helpful, that way I would really know if a medication is helping, or what is causing the flairs.
The pain that I have is mostly connected to my joint areas, and are bi-lateral, it is also in the muscles around the joints with various sizes of surface area that is affected. I don't feel or see any swelling, but I am sure that the swelling that you are experiencing is far worse; at least I can grasp things. Today for the first time, I experienced what felt like a needle poking into both sides of my hips. I was holding onto the handrails as I walked down the hallways at work wishing I had a wheelchair. It is not funny when a ninety year old passes you in the hall while he is using a cane... Okay that can make me laugh except for at the moment. The tortoise and the hare... The thing with that picture is that I shouldn't be the one that is green!
My appointment is about two weeks away. And yes, I am still working on filling out all of the paperwork. Maybe the reason why they sent the paperwork in the mail is so I wouldn’t be there after midnight.
Now I am trying to figure out the difference between joint pain and lupus pain. Not all of my pain is bi-lateral, and some is from outside influences such as my socks bunching up slightly causing pain for the rest of the day, or the weather. How do I tell the difference? I do have so much to learn, I think your posts are a wonderful tool.
I bought some suntan lotion with a SPF 70. I applied it before I went to work, and I still noticed the white and red splotches under my skin on my arms, which comes and goes. Also I have red constantly around the inside of my wrists. Neither looks like the discoid rash photos that I have looked at, nor are they raised. My face is starting to look redder then what I remember it was, at this point it is looking like a shade darker blush then what I should really use. With my hyperthyroid, and taking prednisone I tend to sweat even while I am sitting. (I know, gross!!! I usually use the elevators that were state of the art in the 1930’s because they scare people, and are usually vacant, because I feel like I smell like a wet dog, but when asked no one has said that I am offensive.) Because of that, I am finding it really is hard to keep the suntan lotion on my face. I am getting paranoid about any changes to my skin. I noticed two red marks on my wrist, and I am wondering if it is petcheia, so at work, I sat down and took off my socks to examine my feet. It is a good thing no one walked in on me. I was just so into the moment, I could of least waited until I was in the restroom. Who knows what I will do next? I think reading the posts that said even with a treatment that seems to be working, your platelets could do a nosedive has affected me just a bit.
I have rattled on long enough; I think it is time to read more posts. They really are helping me understand more about this disease then any medical website has. Thank you for being here.

Okay, I have insomnia so I decided to go back to filling out the initial paper work for the Rheumatologist. I am finding myself really agitated as I fill out these forms tonight. How is it pertinent to how my spouse died and at what age? So I started to look bi-polar (which I am not) scribbling every negative thought I had to the questions, and then went back and blacked out everything that felt too personal. I ended up putting the papers in the shredder once I came back to my senses. I don’t want to look like a difficult patient.
When I told my room mate that I was put on Prednisone again, he mentioned how horrible it was for him the last time I took it. I remember putting myself into time out on a regular basis. He should have seen it from my side. It wasn’t pretty at all. I think this is what is causing the issues tonight. I think it is time to stop the cat and mouse game with my boss, and tell him what is going on. If I act up at work I might be forgiven that way.
Now I have to call the office and ask for more papers and start filling them out all over again. I think I need to highlight the questions that are triggering these emotions and insist on going over them while I am with the doctor.
I have two hours before I have to get ready for work, I better try to get some sleep.

Some of the questions on your application may feel invasive. Perhaps you could just write 'N/A' in those fields, or call the doctor's receptionist to ask the reasoning behind the questions? I'm in Canada, and didn't have to go through an application process for any of my physicians, so I'm unsure as to the protocol in your country.

Keeping a journal has helped me tremendously. I had (and continue to have!) a terrible memory since taking prednisone, so I keep a written calendar of daily medications, symptoms, and nutritional info, and whatever else I feel like mentioning. Despite Lupus is a great blog (I ordered her book), and there are some posts about keeping daily records ( here's one about personalized charts ).

Get copies of your lab results, if possible.

Definitely get some sleep, if you can. It's probably comforting to know that your roommate has been on prednisone, and understands how it can make you feel.

The weather affects me big time. I can feel great on a warm, sunny day but if it rains the next day, I feel awful. Cold weather also does me in.

Yes, always keep copies of your labs. I have a huge folder.

Thank you so very much for the links. As I read the helpful hints, I thought to myself does this woman sit around and eat Bon Bons all day long? I clicked over to the blog. I came out of denial. I refuse to recognize my limitations. That is why I was up last night. Activity at work caused so much pain that I was unable to get to sleep. Her words from the blog hit home so hard. I am ignoring the very reason why I have so much pain. I think the book would be a useful tool to teach me how to take better care of myself. But I get the feeling that the author is married, she isn't at all concerned about losing her health benefits by going part time, or even how she will be able to eat. I now know why my step-grandmother cursed her husband for dying before her.
I also love the guide to help me along with starting a journal. It is much better to have a clue then to go a few months, and realize that I didn't have the right information logged. It is a great beginning, again thank you.
To think about it, both my PCP and the hospitalist ordered the blood tests for lupus. They were drawn one day apart from each other. It would really be interesting to see if there is any difference between the two results. I was just thinking about getting the labs from my PCP. Two heads are better then one especially when there is fog involved. Thank you thank you thank you.

I bought that book. I couldn't get through it. I thought that woman was very unrealistic in her advice and it made me upset. She had trouble working (as we all do) so she quit. Not an option for some people. I wrote about it on the old Forum:

discuss.pdsa.org/topic.asp?TOPIC_ID=24930

I was thinking the same as I read her helpful hints. I am a widow; I have a roommate so I can have some spending money. I can't afford to hire someone to take care of my yard. And I definitely can't afford to lose my job and insurance. But I can afford to find ways to make my life just a tad bit easier.
I am always assisting my sister any time she asks for help, yet I can't ask her for help. While my sister was visiting me in the hospital, the nurse asked me if I had a support system to help me, I said no. My sister almost cried. From across the room she said, I am your support system! You do have family that is willing to help you; you just have to let us help! And she insisted to be listed as an emergency contact etc.
I also haven't allowed my son to know that I am sick, or in pain. He has a family to care for; he doesn't need to feel obligated to take care of me. I did not tell him that I was in the hospital, and did not allow anyone to contact him. He came by my house to give me a birthday card. My roommate told him everything, so my son went directly over to visit me in the hospital. I was on bed rest and was only allowed to go to the restroom. He came in; I jumped out of bed, and started to be the hostess. Moving chairs so we could sit closer to each other and visit. He asked me how sick I was. Trying not to alarm him, I told him, "this visit is nothing, it’s just a little blood clot." I went to the kitchen to get the grandchildren some ice cream. After getting the grandkids settled, my world crashed. My son told me that my roommate had told him everything. I felt so ashamed. I finally had to be honest and tell him the ugly truth about my health. (Needless to say, I was very angry that I did confide in my roommate.)
Reading this blog I woke up. When family visits, I can suggest going out to dinner instead of killing myself cooking a huge spread that could feed all of us for several days. I can ask them to help me, or allow them to help themselves to refreshments when they visit. I can let the grandkids pick up the toys before they go instead of doing it for them, okay and they can pick up the ones I played with too. I can learn to let others help me. Maybe my son can come by and mow the lawn once in a while, and I wouldn't have to pay him! Maybe I can ask my sister to go to the doctor with me so she can help me remember what was said, and maybe my doctors will talk to me. Or she can help me remember a question that I forgot to ask. As I read the blog, I couldn't use much of what she suggested, but it made me realize that I can find ways that would work for me.
My roommate always says, "Professionalism is the Ability to Adapt." I think I am starting to understand that statement.

You sound like me. I never discuss my health with my kids (grown) and pretend the problems don't exist. The only one that knows it all is my husband. My Mom, sisters, co-workers, etc. have no idea what is going on. They all know I have Lupus, but they don't know how it affects me. I never ask for help. I don't see that changing.

My husband and I have a joke. Since I always say I'm fine, he is going to put "She said she was fine" on my tombstone.

Well they really don't want to know the truth! That is really cute!!!
I am such a private person that I just say, "I have a disease" if people I know shows any concern. Or I might even say, "this is normal" if people express wishes to take me to the emergency room. I have only told a select few what diseases I have.
Would insurances allow mobility devices for lupus patients? Maybe even a service dog to get things for you so you don't have to move! Am I dreaming? I loved it when my employer had trams running the hallways. That was short lived because there wasn't enough room for both the trams and the CEO's ego in the hallways. But as I think about it, I was far more productive when I could hop on a tram. I wasn't so worn out after work; it was wonderful to have a life after work.
I have lost my daily pill container. I feel so lost! I just am having a terrible time. At first I thought I left it at work. I couldn't find it. Maybe it fell out of my pocket in the car. I will go look later.

Have a happy Easter

I have only told a select few also. It's no ones business but my own. Immediate family and a few close friends. They really had to know for medical reasons - in case I can't speak for myself if something were to happen. I rarely talk about it though.

I don't use a pill container...I've thought about it. I just have bottles everywhere.

Actually I use a large weekly container that I use more like a monthly. That way in the morning I can sort that days pills into the daily with four sections, and I am out of the door. Opening each bottle each morning before work takes too much time, and I would rather use that time to sleep. Then I carry a PDA with an alarm program all day long with me. The alarms go off to remind me to take the next pills, doctor visits, wake up calls, meetings, and what ever else I need a reminder on. I even have the weekend alarms set later in the day so I can sleep in, and still stay on schedule. The only issue with the alarms is, sometimes I am not near any water when the alarm goes off, and so I might forget that they went off. The program says it has snooze ability, but I haven't taken time to figure that one out. If I don't dismiss the alarm it will alarm again in five minutes (maybe that is it! I want a button to push). The calendar program, and other programs works with windows outlook so when I sync my PDA with my PC all of the programs update. So I don't always have to type on the itty-bitty screen. A smart phone also can be used instead of a PDA, but I have no need for a cell phone. I also have the health program that journals my doctor appointments, and health information.
I have to say that you are truly Amazing Sandy. You are "The Administrator" and it looks like all of these threads keep you going all day and night long.
Okay I am back to reading the threads. I find that I can't tell which postings I have already read, so it is taking a bit of time to get to the newer postings. But then again, the repetition is making it all sink in. Do you have any helpful hints?

Sorry, Moderator not administrator

I take my pills when I get to work. First thing I do. I take lunch ones at lunch and the rest when I get home and before bed. I'm in a good habit.

As for the threads, I've been doing this for so long that I easily remember which ones I already read. It gets easier when you get familiar with the people too. Other than that, you'll just have to rely on the "new" marker.

I wish pill taking was that simple. I have ten prescriptions at this point six of them are to be taken multiple times a day. One can't be taken at the same time as another but both needs to be taken in the morning with food, about a half hour apart is what the doctor told me. One has to be taken on an empty stomach twice a day, others with food twice a day. There is one taken at bedtime, one is to be taken at two in the afternoon, and one every six hours.

I have 7 scripts, but only a few of them are taken twice a day. I have a harder time with Vitmains because you can't take calcium when you take other meds and I usually take 4 potassium pills and two magnesium, iron, etc...I can't seem to fit those in. I put them in my little cup at work and intend to take them, but at the end of the day they are still in the cup. I get busy and forget. I don't pay much attention to taking them with food or not; I'd never take them if I did. I can't eat in the morning (never could) and that is when I take Prednisone.

Last night when I was going to bed, I looked at the handful of pills and thought, one of these days, I'm not going to wake up. It gets scary.

I know exactly what you are feeling. I am truly sorry you are feeling down, I wish I could give you a hug. I guess cyber hugs will have to do. ((((Sandi)))) When I was in the hospital, they gave me my vitamins together with my regular medications. I wasn’t aware that this could be an issue. Could you tell me a bit more about it?
I have been thinking that Imuran has been making me feel ill. Last night it got worse. Even though pepto bismal states clearly on the label, do not take if you have kidney disease; I ended up taking some just to stop the pain. And it helped, but I took four doses to get me through the night. The pain kept waking me up.
I am certain that this is an ulcer. So I read up on that, and I am not taking NSAIDs. But then I found this at Wikipedia: Medicines associated with peptic ulcer include NSAID (non-steroid anti-inflammatory drugs) that inhibit cyclooxygenase, and most glucocorticoids (e.g. dexamethasone and prednisolone). I always eat breakfast before I take the Prednisone. And it still has caused an ulcer? That is frightening, I don’t think ulcers and ITP is a good mix. I have been taking prednisone for maybe two months. Everyday I feel weaker, and I am just not making progress. It really does feel like one step forward two steps back. I doubt that the ITP is the issue since my last platelet count was in range. So I think what I am feeling is lupus symptoms. Today I told my roommate that I don't think I will be making it much longer. I really do feel like I am going to die soon. And I still need to get my ironing done, and make it to work in the morning? I have to pick myself up and pretend nothing is wrong once again. But I think I will take a nap first.
I intend on seeing my PCP tomorrow so he can verify if this is an ulcer.
Wikipedia mentioned: Symptoms of duodenal ulcers would manifest mostly before the meal—when acid (production stimulated by hunger) is passed into the duodenum.
Eating is helping, I went to the store and found a few things to quickly get into my stomach so I don’t have to rely on the pepto. I hope that helps until I can see my PCP. I am certain that will be tomorrow. The hospitals owns several medical groups around town, and they are having wars on who is the best provider. So at this time they are adverstising same day visits. And my PCPs office is one of the medical groups that is involved. This is a definate plus for me at this time.
I think it is very hard emotionally to take these pills. Even with the alarms set, I still manage to mess up taking them every weekend.

Rhonda:

Prednisone can cause problems with the stomach, so you may not have an ulcer. We've all had that discomfort due to stomach acid at one time or another. You should be taking something like Prevacid. I've been on Prednisone for years along with high dose NSAID's and don't have an ulcer yet. Those can take a while to develop. Good thing to get it checked out though.

Wikepeia is not a good source for information. The articles are written by and edited by any one who has access to the internet.

You're not going to die soon - stop that! The meds can make you feel horrible, so between that and Lupus symptoms, the days can be rough. I've gone to bed many times so sick I thought I was going to die that night, but I always wake up and start another day.

As for the Vitamins, which ones do you have?

I went over and got copies of my medical records from the hospital stay. Anti-double-stranded DNA was the other positive test.
My PCP said that he wants me to see a GI doctor. He says the increasing pain is something to be concerned about. He agreed that prednisone could cause ulcers. He had me taking Pantoprazole 40 mg, and he told me to take two a day until I get into see the GI doctor. He also thinks I might be becoming anemic. So he wants a copy of my CBC that I will have drawn tomorrow.
I told him that I was having issues with the information that the rheumatologist was asking. He said with the big cluster of autoimmune diseases that I have, it is good that the rheumatologist wants to look at every possibility. And he is glad to know that the rheumatologist is not leaving any stone unturned. So here I go again trying to fill out that paperwork.
Thank you Sandi for the pep talk. After a few hours of sleep I started feeling better. But it only lasts a short while, so I took naps all weekend long. With time I will learn how to accept this feeling as normal.

Rhonda:

You will have ups and downs. I can't say I've ever found a "normal". I have times where I feel awful for weeks, then I get a good couple of weeks.

I have also found that many times, I have something out of whack. I have problems with low potassium and magnesium, so sometimes it can be that. I also have low ferritin and take iron for that. My B-12 also slips down low, so I have to watch that. I have also had low Vitamin D and had to treat that. This is the reason I take so many Vitamins (when I remember). All of those things can cause fatigue and other symptoms. I have to constantly stay on top of things and try to evaluate what might be going on. It took years to find all of this out and many times I wonder what else might be low that I've never had tested (and I ask for a lot of tests).

From time to time I ask for thyroid testing and those types of things because you never know if that might pop up. It's really hard to distinguish Lupus symptoms from something else that might be going on. It's easy to assume that it's always Lupus causing a symptom, but sometimes it's not. I have to remind myself of that. Many of us with Lupus agree that most of the time, we don't even know when we are sick because with Lupus, we feel like we have the flu or any other virus-y thing. I can honestly say that I have not been sick one time since diagnosed with Lupus; it has always been Lupus in my mind that causes symptoms.

Back to normal - I have never accepted feeling bad as normal. I am constantly on the look-out for what will make me feel better long-term. I have tried CellCept, but couldn't tolerate it. I have a whole list of things I've tried and currently see a pain management specialist to manage that area. Don't give up on yourself; keep pushing.

Well, the feeling that I thought was an ulcer is gone now. Was it the flu? I don't know, I have never felt pain in my stomach before. It makes me wonder if I can trust what I am feeling. Do I go to the doctor when I feel something new, or do I just monitor it? I don't want to appear as if I am a hypochondriac. What do I do? Having ITP complicates everything. I am experiencing a lot of anxiety.

Last night I noticed some petechiae on just one of my legs. Does this happen, or am I being paranoid? I am now questioning everything as if I can’t trust what I know and feel. I know I need to get some lab work done to confirm if my platelets have dropped.

Is extreme fatigue associated with flairs, depression, can it always be an issue, or is it different with every person? I ask because I can’t continue being this tired all of the time, I need to find a way to control it. Is that even possible? I am drifting off to sleep while I am at work, and that is usually less then two hours after I clock in. My eyes are closing every chance that they can. My time off I am asleep more then I am awake. There has to be a way to fight it. I can’t afford to lose my job.

itp made me very tired a fatigued, until the prednisone but thats a different story :blink:
petichia doesnt really have a pattern to it so itll just pop up wherever. go to your doctor for anything that concerns you..its their job to make sure you are healthy physically and mentally. as for trying to stay up make sure you are eating healthy and try to listen to a lot of fast paced music, something that has get up and go that can keep you goin. the only way can stay awake at school is with my ipod in one ear.

Thank you Ianroom. That has helped me calm down about the petechiae. I did a poke with a diabetic lancet, just to see if I was bleeding a lot, it doesn't seem thin. They should have a lab that is open seven days a week. But I will still go to the lab before I start work on monday. Better safe then sorry, right?

Music, fast paced? I think all of my music is too mellow, because I do listen to music while I am working, and it doesn't keep me awake. Maybe my son can suggest some music that will help. When he plays a song that he thinks I will like, it is usually mellow for his style of music. But he is right, I do like what he plays for me. Maybe we can try to step up the pace a tad bit and still find music that I will enjoy listening to. (I just realized how old I sound. It was bound to happen.) I will try it, thank you.

Rhonda - there are no easy answers. It is very difficult to distinguish what is going on. I still have that problem. I tend to ignore things and hope they will go away; they usually do. Some day that just might bite me. Symptoms come and go, I have found that out. I spent my first year having a lot of anxiety attacks from Lupus - ITP didn't bother me as much. I did get an anti-anxiety med and it helps. I used to panic over everything that happened to my body. With Lupus, a lot of scary things can happen. I think the worst thing for me so far has been neuropathy. I panicked over that but it has lessened since it began, so things do not always progress.

Fatigue can be caused by a lot of things, so you need to discuss that with your doctor and see if there is a reason. Low B-12, low potassium, low iron, etc....a lot of times you will find there is a reason that can be treated. I've gone through periods like that, dragging through the days, and it is hard. Although I never have the energy I had pre-Lupus, there are times when I do feel better. Depression can also cause fatigue, as can Prednisone tapers, so maybe there is a legitimate reason. Don't lose hope, okay?

Okay Sandi,
I just was hopeful that I could beat it. That fits, to what is going on. Thank you, I will bring it up at my appointment.

I have been looking around and found more helpful information. I have said that the more I walk, the more pain I am in. I think I found the answer to that issue. Now I have more to talk about with the rheumatologist.

Avascular Necrosis of the Bone

Avascular necrosis (AVN) of the bone (also called aseptic necrosis or osteonecrosis) is characterized by reduced blood flow and increased pressure within a portion of the bone. Weakening of the bone occurs, causing tiny breaks, and eventually the bone surface collapses. The causes of AVN are not known, but it is associated with long-term use of high doses of corticosteroids, alcohol abuse, sickle cell anemia, pancreatitis, trauma, and other conditions. When AVN develops in people with lupus, it is almost always a result of corticosteroid use.

Your hips, shoulders, and knees are most commonly affected by AVN, and the initial symptom is pain in these joints, especially when you are engaged in weight-bearing activities such as walking, running, and lifting objects. These types of motions lead to stiffness, muscle spasms, and limited movement of the affected joint. If your condition becomes more advanced, pain may occur when you are at rest, especially at night. Currently there is no effective medical treatment that can reverse this condition. In advanced cases, surgery (including artificial joint replacement) can be effective in relieving pain and improving mobility and function.


This explains why when I quit using prednisone with my kidney disease in 2003, I had a lot of pain in my hips, knees, and shoulders. Why I have problems getting up off of the floor. And the problems I have standing after being in a chair. And after one attempt, I quit even trying to take a bath. I thought the warm water would help with the pain, I felt like a sea elephant when I was trying to get out of the tub.
I am in tears. I finally have an answer after all of these years. It isn't all in my head. It is real. The positive ANA that my nephrologist found also fits into this answer. I have found that puzzle piece! That first rheumatologist that I saw called it fibromyalgia. I am positive it isn't fibromyalgia now.

Next question, can Plaquenil or other drugs help reduce the pain? Or are they more used for arthritis pain?