Here is my story.
I am currently a 33 year old female with a 13 month old child. I have gotten sick a lot since I had my son. For as long as I can remember, I have always felt tired and did not feel good. So, I have pretty much quit telling people because they say "you are always tired/sick." I remember being like 15 years old and heard about HIV for the first time. I freaked out. I was certain I had the disease (was still a virgin), because it caused you to be tired all the time. I even had a blood test done. I of course did not have it!!
So, I have also suffered from headaches my entire life. In 2004 they started getting to be more often. I went to an eye doctor. That was not causing it. Went to a neurologist. Tried Topamax...not a good thing. Got off that. She got me on Relpax, which I loved. I also take fiorcet with codine and hyrdocodone at times for the pain. Headaches get worse around my menstrual cycle. So they think my headaches are hormonal. But what about all my other headaches??
Before I got pregnant, my hair started fallling out in an alarming rate. Then just recently, in the past year I got strep throat and thought I was going to die. I hurt down to my finger tips. A few months ago I got some weird stomache flu. Couldn't eat for a week. All blood tests were normal. Got a ultasound. Everything looked normal. Last month I woke up one day and every muscle in my body hurt. I couldn't even go up and down the stairs without crying. I had to crawl. Got tests done. One test showed I was having muscle damage, and my ANA test came back positive at first, they ran it again it came back negative. Everything else - normal. I saw three doctors in 4 days. One told me I was just depressed. The others told me I had a viral infection. I also have gotten a rash on my elbows that comes and goes for the past three months. It just looks like red bumps. I have always gotten little round red skin things that come and go. Don't hurt. They are small.
Now I am so tired I can not even get out of bed. Went back to the doctor. She and the other doctor she works with said they are not worried. Probably viral.
They ask me questions like - are you more sensitive to cold, do you eat more, are you more tired, are you having more headaches, etc. Well - I always so NO because this has always been me. Always tired, always don't feel good.
So does anybody have any advice. Should I press my doctors, or am I just crazy and there is nothing wrong with me?
Did the doc's test the entire Lupus panel or just the ANA what about other auto diseases? Have you seen a rheumi? Have you been tested for Lyme? When all auto tests come up neg. it is a good idea to be tested for Lyme, it mimics Lupus and others and all the symptoms that you mentioned are related to Lyme. Go on the lyme board and post your concerns and read the symptoms list. Don't let the doc's tell you that Lyme doesn't exist in Wash. I was born in Pasco, and have a friend in Kennewick and a friend in Moses Lake that got lyme Disease. I also know many people in NW Wa. with lyme. I am pretty sure that I first contracted it up on whidbey island. Vancouver british columbia has the highest number of reported cases in all of Canada, and it is right on the WA ST border. Doc's in WA just don't want to deal with lyme. Hope this was helpful. Sarah
Dear Dawgswife, Have you read the "sticky posts" at the top of the thread list? You must meet at least 4 of the 11---not necessarily all at once---to be Dx'ed with *systemic* lupus (SLE). PLUS, there are also OTHER kinds, called "subsets", for which you may meet fewer than 4.
An aside: the odds of positive ANA are VERY high in SLE. But in the "subsets", a lower percent are ANA-positive.
Where are your "little round red skin things"? I ask because I started getting red raised bumps, non-itching, on my arms & torso. This was in my 30's. Prior to that, I'd had episodic problems since childhood, including fatigue, joint & shin pain, elevated sed rate, low-grade fevers, irritable bowel (severe), irritable bladder, UTI's, hair loss, conjunctivitis, migraine-like headaches, back pain, sciatica, anemia, etc.---a real hodge-podge!
Anyway, after four years, my little red bumps started "morphing" into perfect red circles, which then expanded outward before fading without scarring or depigmenting. I had numerous skin biopsies done by dermies. LOTS of bloodwork & urinalysis. Kidney function test. But no answers...
I finally took myself to a teaching hospital rheumie who made all my previous drs. look useless. My Dx was a "subset" of systemic lupus called SCLE (subacute cutaneous lupus eyrthematosus). I remained ANA-negative but finally tested positive for anti-Ro. I take Plaquenil, avoid the sun religiously & have had the best years health-wise of my entire life.
So that's why I'm curious about your rashes, especially when coupled with all the other things you mention. Do you correlate them with sun exposure? How do you feel when they are coming on? Has a dermie ever biopsied them, including immunofluorescent tests? I really hope you post again when you can. Bye for now, with best wishes, Vee
P.S. Nope, you do NOT sound even a tiny little bit crazy to me. Hang tough, OK?
P.P.S. I was originally misdiagnosed with Lyme & treated with antibiotics. But my rashes kept on coming, about 4 times a year.
You see - I have so many questions.
I am not sure the round skin things I get I would even call a rash. They are round, circular and then turn white and go away. They do not hurt or nothing. I have gotten them for years, so I pretty much just ignore them. I get like one or two on my arm. Not a bunch at a time, which I would consider a rash. And I get really bad sun burns, so I just stay out of the sun. So I can not correlate them with the sun. But just in the past few months, I keep getting a recurring red rash (little bumps) on my elbows. They were so bad a few months back I wouldn't even where a short sleeve shirt!! But, then it goes away.
To be honest, I had never heard of this disease until I found these message boards yesterday. So I have a lot to learn.
They have only just recently ran these blood tests and ANA was one of them. Never heard of that test before then. And they never showed me the actual results. Just told me my ANA was positive, then negative and I showed muscle damage. The muscle pain was so severe for about a week I just wanted to die. But for as long as I can remember, I have always been tired and felt sick a lot. I have always been told nothing is wrong with me, move on. I have had episodes of depression in my life and have taken meds for that a few times. But right now, I am just not depressed. I know when I am depressed.
When I had that weird stomache flu thing a few months back, there was a possible kidney stone. But they did nothing more because after a week I felt better.
This latest episode I had with the severe muscle pain I also had what I would call canker sores. I am not sure what everybody means when they talk about mouth ulcers. Is that the same thing?
Also, due to my headache medicine, I get constipated a lot (sorry so personal there!). And then when I am not taking it, I seem to go the other way. So I am never what you would consider regular.
As for my aches and pains. I always hurt. Not sure how you can tell if they are in your muscles or joints. I just hurt. I also am very weak alot. It is hard for me to just carry my child. I also have headaches pretty much daily for the past few years. I have gotten used to them, but at times they get bad enough that I can't work or take care of my child. It is kinda getting old!! Before I had a kid, if I felt this way - I would just go take a nap. Now that I have a kid and a husband, it is not that easy. We are fighting a lot because I need to go lay down and he is having to pick up the slack. So I guess that is why I am trying to find out if I am just tired and a non-energetic person that has muscle pains and headahces and I just have to live with it, or is it something more. It is not like I want to have "something more", but it would help explain to others that I am not crazy.
For years I have just lived in pain silently. Take advil/exedrine/aleve or if I am lucky to have my headache prescriptions filled, I take those.
So as for tests, it seems I am at the beginning of those. They just ran another one yesterday and I have not gotten the tests back yet. I think they were gonna run the ANA again and check my thyroid.
Also - to answer Sarah92202 - I did run across a site on lyme disease and pondered that one for a bit. I will bring that up to my doctor also. And no they have not run the full lupus screening. TO be honest I am not sure what they ran. I guess I need to ask to look at those results.
Thank you!! I just have a million questions. Hopefully you all don't get sick of me.
Since your symptoms go back so long ago, could you have CFS? Sometimes we can also get depressed without even realizing it when we have a chronic illness and that can cause pain. If you are feeling so ill that you can't even care for your child, i think you need to tell that to your physician because it is most certainly interfering with your daily life. Have they checked your thyroid function?
Dear Dawgswife, I agree that asking for copies of all your test results would be a good place to start. Also, if you take any meds, it makes sense to review all of them with your doctor. i.e., could side effects account for any of your problems?
Also, it makes sense to just ask your dr. point-blank what condition(s) could cause your problems & which he is actively considering & testing for.
You mentioned that you just had thyroid tests done---which makes sense to me... My big sis was just diagnosed as hypothyroid (underactive thyroid) after 6+ years of poor sleep, fatigue, weight gain, breathing problems, horrible mood swings, etc. She's on Syntrhoid now & coming around nicely.
And has your dr. ever referred you to a specialist, like a rheumatologist or dermatologist? If your latest round of tests doesn't start to turn up answers, I hope you can seek some input from any specialist who seems to be in the right ballpark, symptom-wise.
I have just read the latest replys. Thank you for taking the time to respond to me. I really appreciate it.
The only meds I take are for my headache. We went over those in my last visit on Thursday. She basically said she is grasping at straws trying to figure out what is wrong with me. The girl I saw is in the office of my GP, my GP was not available and since she saw me during my last painful muscle thing, I thought I should see her again. I will have to wait to see what the latest round of tests show. I have had my thyroid check in the past and it always came back fine. But she thinks since I just had a baby, it may have caused it to go off balance.
Also - does anybody know anything about lupus and pregnancy? I of course don't know that I have lupus or not, but I am just curious. I had a migraine pretty much the entire time I was pregnant. It was horrible. I barely got through the pregnancy all together and even decided I can't do it again and will not have any more kids. It was the worse experience of my life. Not sure if an auto immune disease could have caused my pregnancy to be so horrid???? Does anybody have any insight on why I may have had so many migraines while I was pregnant? Could be another clue.
Ok - back to the doctors. I honestly don't think they are going to do anything further for me. My GP does not like to refer to other doctors. I had to have my eye doctor refer me to a neurologist for all the headaches. So I doubt he would. But I am to the point where I am thinking I need to change doctors. I have been going to this doctor for like 12 years though.
I have good days and bad days. Today was a very bad day. I woke up feeling tired. Pushed myself to go to the park. Had a horrible allergy attack. Came home and could barely breathe for some reason. I was very dizzy. Now I have a low grade temp hovering around 100. I was having chills, now I feel hot. I asked my mother to come help with my kid because I did not feel well. She comes over and says "you know it is time for you to do something about yourself. We all helped you out during your pregnancy, after, etc. The doctors keep saying you are fine. So you really need to do something." So she basically told me I was crazy. My own mother even thinks I am making this stuff up. Dosn't anybody think that I wouldn't give my right hand to have energy, not hurt all the time and feel good!! I HATE feeling like this. I hate being so tired on some days that I just have to go to bed.
Anyways... sorry just venting.
Question to connie - What is a CFS?? I think you might mean chronic fatigue syndrome? I have heard of that once. My friend was Dx with it once, but then she for some reason does not have it anymore? I don't know much about that. I will look into that also.
Anyways....Thank you to all for listening and even giving advice. I am feeling pretty alone in this right now.
Hi there. Hang in there and BE PERSISTENT. I have SLE and read all the books and here's my patient/layman 2 cents:
I can tell you that pregnancy (hormone fluctuations) can cause lupus flares, even the initial flare that results in diagnosis. And I can tell you that mouth ulcers are a common lupus symptom that is not that common in other ailments. Same with hair loss (alopecia). But severe muscle and joint pain, headaches, chronic fatigue, lethargy, insomnia, stomach problems and low grade fevers are common lupus symptoms that also can be attributed to viruses, incl. lyme disease, Epstein Barre.
Your skin symptoms don't sound like lupus lesions. Go to a dermatologist about the rashes and see what he says - find one that treats cutaneous lupus so that he or she can tell you based on actual experience whether your rash appears to be lupus-related. If so, he or she can do biopsies and can diagnose lupus based on the biopsy. Mine was negative on an "immunoflouresent array" biopsy, but positive when my doc did a deep tissue biopsy and manually reviewed it under the microscope personally and confirmed it with a second doctor's personal review. So negative flouresence does not mean no lupus! My diagnosis was delayed for years because the fast and easy biopsy test was used and came out negative.
Even in diagnosed lupus patients it may take a while of testing over time before your bloodwork shows consistent or high-level ANA "positive." You need to get a copy of that bloodwork asap and compare the results to those on the numerous websites explaining the meaning of the lupus panel tests and results. Same website explain what the results mean as to other autoimmune disorders.
So you may have lupus or you may be approaching a level of antibody activity that eventually will show you have lupus, or your bloodwork eventually may exclude lupus and show you have some other autoimmune disorder. Or you could have Lyme, Epstein Barre or some other condition. Keep getting tested every six months with a full lupus panel of bloodwork and whatever other tests your doc may find useful - and see a rheumatologist to get the lupus panel testing because many general docs do not know what they heck they are talking about with lupus (even some rheumatologists do not seem to know what they are talking about regarding lupus for that matter).
Only other piece of advice - and this worked for me - drink a lot of Smart Water when you have muscle cramps and headaches. It has potassium/electrolytes in it. Plus muscles cramp severely from dehydration; and severe headaches also are caused by dehydration. So you could try drinking lots of water or Smart Water. It works for me on those specific symptoms (I'm a chronic diet pepsi drinker and apparently am always dehydrated -- until pain sets in and I am reminded to drink water).
I wish you the best of luck in getting a speedy diagnosis and treatment.
Dear Dawgswife, When you went thru the "sticky posts" at the top of the thread list, did you catch the one on APS = antiphospholipid syndrome? It's a clotting disorder that occurs both "standalone" & also with lupus. (Your comments about frequent headaches caught my eye.)
At the same time I was struggling with worsening problems, a neighbor of mine had constant muscle pain. It took her several years to be Dx'ed with myositis & to receive treatment.
I switched drs. a number of times. The day I told my GP I was going to seek out an specialist, not in "his" hospital affiliation, we had a knock-down, drag-out argument---so loud that it brought his staff running. Then he started muttering, "Well, I'm sorry I couldn't help you"---as though it was all about HIM. I liked him but he infuriated me.
So, I hope you keep pressing for answers. That's the awful part---that no one else can do it for us. Know that we're here anytime you want to talk, to vent (that IS allowed---don't be shy!), and to kick things around. Thinking of you, Vee
Thanks again for your responses. There are so many things to think about.
Well my doctor called back with my test results. My ANA was positive again and then negative again. It seems they did run some other tests that sound a little like you all were talking about, but the only one I remember was the Anti-Ro and it was normal. I asked about my sed rate and it was apparently normal. I asked how I can have two positive ANA tests and two negative ANA tests. The nurse told me I must have had MONO some time in my life, and it is causing the positve result. She said it means I had something in the past, and the negative means I currently have nothing going on. Does that sound right to you guys??
So I am back to square one. I am changing my thought pattern here. I am going in again on Friday to talk to my GP. I am praying he does not blow me off. I am going to tell him I would like to start tracking all my systems and get retested in six months. I am going to be firm, even though for some reason he scares me!! He is so black and white. I want to try and look at symtpoms that I have had for years and just thought were normal and also the current or recent symptoms that don't seem so normal. Hopefully he will take me seriously and understand that this is effecting my daily life and I need some help!!!
In the mean time, I am going to do lots of research. I am going to look up Antiphspholid syndrome, CFS, Myostis, Lyme Disease and Epstein Barre. Some of these things I have never heard of.
It seems to me like whatever is going on, is not going to be answered any time soon. I need to be patient and persistant.
Well I write more in awhile. I am at work, and I gott ago. I will get back to all of you soon!!
Sorry it has been so long since I wrote back. I have had a very emotional week. This trying to find out what is wrong with me, has pretty much consumed my life. It is all I can think about right now. I have been doing lots of research and I personally think my symptoms sound EXACTLY like fibro and/or Lupus or CFS. Fibro so far seems to match the most.
So after reading Vee's response about her knock down drag out fight with her doctor (which I just had to laugh!), got me thinking about my doctors appointment this Friday. I am pretty much convinced he is going to think I am crazy and say nothing is wrong with me. I even called his nurse yesterday and was just balling. I told her that by the time I became Dr. M's patient, I had already been told there is nothing wrong with me. I had all the blood tests done and was told everything is normal. I was told you are not anemic, you do not have HIV, your thyroid is fine, etc. And so I never told Dr. M about all this stuff because it was engrained in my head that all this stuff must just be me.
Now I am going to walk in there on Friday with all this stuff. He is NOT going to believe me. The nurse told me to give him a chance. I asked her to warn him about what I am thinking so it does not catch him so off guard. I wanted her to let him know that the only reason I am bringing it up now, is because I have a 13 month old wonderful little boy, and I just can't keep up with him, my husband, work and the chores. I am just drained. Before my baby, I could handle the exhaustion. Now - I don't have that luxary and my little boy is suffering for it.
So I have also been spending some time on the Fibro boards and learning about that. It seems to mirror everthing about me. The hot/cold all the time, my lock jaw, the bouts of insomnia, the depression/anxiety, the constant feeling of being tired, the fact that I always just hurt, my chronic headaches/migraines. I could just go on!!
I am not convinced I do not have lupus, except the blood tests are saying otherwise. So, in the mean time, whether my doctor believes me or not, I am going to try out some of the herbal solutions discussed on the Fibro page. I am also going to force myself to at least walk a few minutes every day until I can get my stamina back up.
It seems even if I get diagnoised with Fibro, there is not a whole lot they can do for you. So right now I am determined to make some changes on my own.
Wish me luck this Friday. I am so nervous about the appointment it is making me sick!!
Thanks to you all for listening and all the advice so far. I do not think I could have gotten thru this so far without it. I truly just believed that nothing was wrong with me, and accepted that I would have to live my life this way. But thanks to you guys, I know that there is others like me and there is help out there!!!
Take care - I will let you know what happens at my appointment tomorrow.
Dear Dawgswife, In your shoes, I'd STILL ask for & start keeping copies of my bloodwork... Did you ever say if SPECIFIC autoantibody tests were done? I read back thru your first posts & you mentioned *only* a positive ANA, occurring several times. The stinker is that ANA is positive in a number of diseases, not just lupus; but it's also sometimes positive due to a passing virus or family tendency.
But when ANA is positive, especially more than once, you'd expect your dr. to have run additional more SPECIFIC tests, e.g., anti-ds-DNA, anti-Sm, anti-Ro, anti-La, anti-RNP, RF (rheumatoid factor), etc. The "sticky post" on test results has a resource in it that, when you go there, you'll see info an all these tests. If those were never done, maybe you'd want to ask WHY NOT?
I understand what you're saying about fibromyalgia & CFS. I wonder, though, if hair loss "fits"? That may be a good question to ask, actually. Whatever you're told & whatever you suspect---lupus, CFS, FMS, etc.---that's always a good approach: ask what fits & what doesn't.
So, hang in there, OK? I hope your appt. goes well & brings you closer to answers! Best wishes, from Vee
Just got back from the GP's office. I was so nervous and I am not sure why. However, his nurse told him I suspected FM so he walks in and automatically starts pressing on places. He did not press very hard, so it did not hurt. So he says I don't have FM. I told him if he would have done that three weeks ago when I had severe pain in every muscle, then that would have hurt then.
Anyway...so I don't think he totally believed me. He didn't even ask FM type questions. But he did tell me to start a slow work-out program. Start with 10minutes and work my way up. Easier said then done, sometimes walking across the room wears me out! He is also going to put me on a low dose of some anitdepressent at night. He said this should help with my sleep issues I have and hopefully the muscle pain.
He did say my enzyme levels were high and so he wants to retest those in six weeks. If they are still high, this will worry him and he will want to run more tests. I think he mumbled something about a cancer. I did not hear him.
Well - I am not going to give up. I am going to do what I can to get my energy levels back up and try to get rid of the pain.
I forgot to ask for the test results! I was so concentrated on all the "issues" I have, I spaced it. BUT I WILL get them.
Thanks again everyone!! My kid is at daycare today, it is my day off. I have a million things to get done and if I get at least a few of them done, I am going to call that good!!
Dawgswife. How are you feeling? Fibro is not a disease, it is a group of symptoms that have been put together to describe a syndrome that doc's cannot identify the cause of. It is my belief by years of research that this is a cope-out diag. that they use when all other tests come up neg. and they honestly don't know what else to tell you. So they say fibro, they usually tell you to get psychiatric help, excersize, take anti-depressants, get into a support group. But they can not cure it because it isn't really a disease. I think it is a good thing that your doc didn't classify you in that group, because alot of people do have serious underlying conditions that go untreated because they are given a fibro "diagnosis" keep looking dear, your symptoms are indeed a sign that something is amuck in your body. Did you ask him about Lyme disease, or restesting for all auto-immune diseases? What about adrenal insufficianecy, that can cause all of your symptoms to and it is commonly not checked and misdaig. as FM. There is a lab in Tukwila WA. called diag-nostechs that tests 24 hour cortisol, your doc can request a kit be sent to your home and you can do the test at home on your own. It is a saliva test that checks your cortisol levels 4 different times of the day. All you have to do is suck on the swab and put it in a vial, for different times, then you send the kit back to the lab and they test it for cortisol levels, it also checks DHEA, progesterone, insulin. Have you looked on the Addison board at the symptoms that AI causes. I have secondary AI caused by Lyme and so do many others I know. Good Luck and keep looking, I know it's hard and you are exhausted, but you have to get well, your child needs you and you are too young to feel this bad. It will get better, just don't give up, there is an answer out there and you will find it. Sincerely, Sarah
Last edited by sarah92202; 06-03-2007 at 09:50 AM.
Thank you for the response. It is funny you would mention that about Fibro because that is kinda what my doctor said. He said that I do not want that "name" attached to me. It would not be a good thing.
I did not mention Lyme disease or any other disease. This doctor hates for you to try and diagnoise yourself. So I went in there and decided to tell him my symptoms and see what he would do for me. He now knows that I feel I have a chronic problem that I have been just living with for years. So I think as time goes on and if I have severe muscle pain again and if the fatigue continues with the treatment I am getting, then he will keep trying until something works!! (I hope).
The medicine he gave me to help with sleeping (an anti-depressant taken at bedtime), seems to be helping. I am only on day three though. And the new vitamins and amino acids I have been taking also seem to be helping a bit.
I have a long road ahead of me. But I am determined to look up all this stuff/advice I have been getting from all of you and to keep trying out things that I can do myself. I can not and will not let this go on. My son needs me!!
In six weeks I am getting more blood tests. We will see what happens then. I hope and pray that I won't need to go to the doctor before then. With my track record this past year, it seems I have been getting sick at least once a month!!
As for now, I am actually feeling OK. I think I am slowly starting to feel a little better. Wish me luck! And thanks for all the advice. I have some new stuff to look up that you (sarah) just mentioned.
PS. Sorry if I did not answer all your questions - It is hard to remember it all without seeing the posts right in front of you!!