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Discussion Starter · #1 ·
My name is Missy, and I am 21 years old. However, I feel as if sometimes I have the body of a decrepit old woman.... I have a multitude of symptoms that have got me and everyone around me stumped. I don't know what is relevent, what is not, so I guess I'll just make the seemingly ever growing list of things I've got going on....

-Severe headaches/migraines pretty much daily since I was 15, but I remember getting them as young as third grade.
-Horrible pain in my:
Knees. Everytime I squat down they pop and have done so since I was little. Sometimes I feel like they can not support me enough to get back up. They also pop and hurt so bad, its hard to walk for an undetermined amount of time. If I try to slightly run up the stairs, (when I feel the slight and rare burst of insparation); I feel like they might just buckle.

Hips. They hurt, alot. And most times when they hurt, the pain is also present down into my knees and ankles. It is usually just one side at a time, but sometimes when I'm in bed or just lounging on the couch, doing no physical activity at all out of no where both knees and hips get this horrible stabbing, throbbing pain that makes it difficult not to cry.

Ankles. Like the rest, crack and hurt alot when I get up in the morning and throughout the day. Sometimes I feel like its broken or twisted just from getting up. (I of course know its not broken, and the pain usually passes after a while).

Back. My lower and upper back are almost in constant pain. I admit however, that my poor posture (I am just a young girl in her 20's, my mother has to remind me to do this on the daily) does not help this situation, though I honestly do feel almost worse when I sit up straight. Sometimes I don't have the energy to sit up like a functioning part of society.

Wrists. They crack almost anytime I move them side to side or up or down and hurt when I do either. The pain does get worse when its damp or rainy or cold. I have broken my left wrist when I was 4 and 14, and my right wrist when I was 12 (what can I say, I was a daredevil..though I don't think many daredevils break their arm during track... a generally low contact sport)So I expect that some of the pain I'm feeling is due mostly to that, but with the other joint problems I've been having and can't help but think it could be due to something else.

My Head. I have a headache probably 80 percent of the time. A kind of achey dull one hangs around almost constantly, but out of nowhere a sharp pain will come, never starting at the same place. Sometimes its an intense all over ache, sometimes its isolated, my eyes hurt, my jaw hurts, sensitive to light, nausea, orbs, and a gereral sense of wanting to curl up in a ball in the dark for days is the norm for one of my severe headaches, which sometimes happen up to 3 to 4 times a week.

- I feel confused alot, and sometimes have a hard time remembering things; even though I have a great memory. I can remember things that happened when I was six years old as vividly as today, but sometimes I forget what I or someone else is talking about mid conversation.

- I have noticed that I slur words and combine words when I talk, it feels like my brain knows what to say but can't get it out right. Needless to say, it is terribly frustrating because people like to make me aware everytime I goof up, which just makes me feel even worse about it. I never had any speech problems at all as a child, I learned to read early and have always been into english, history and that sort of stuff, so I feel like what I am experiencing is not something normal for me.

- I have abdominal issues (that I really, really despise talking about) that have been going on since I was about 13, though I never sought medical help until recently because I just thought maybe it was normal, but the severity and occurence of the symptoms were dramatically interfering with my everyday life. I went to gasto's, who told me it was IBS and sent me on my merry way with a pro-biotic and some immodium. (This was after a different doc told me that IBS is a diagnosis that is given when a doctor really has no clue what your problem is). I also get sharp pains in my left side, that hurt in my intestinal area under my ribcage (I'm very short waisted) and straight through to my back. I also have boughts of nausea and vomiting, and not being hungry or eating for long period of time, though I have a deep love affair with food!
- My skin will get really red and feel hot, and I start to sweat, and I start to feel dizzy and like I am just going to pass out. My skin then goes pale and I feel cold, and usually end up throwing up (or coming very close to it). This has happened to me in a variety of places, including home, work, and in line outside for a concert. Not what I call a good time. It has happened after I've eaten, so I don't think it is that sort of issue.

- I have horrible vision, and my most recent trip to the eye doctor came with the results that my left eye may possibly be affected with glaucoma. My perscription seems to get worse every time I go back. My eyes were worse than my fathers when I was 17, and he was 45. And, it always seems that I can never get the right perscrption. My vision goes blurry sometimes, and my eye are super sensitive to light. It can be a cloudy day and my eyes will squint. I also wake up with what I like to call 'eye goo' and it will form durning the day and really isn't a very attractive thing. My eyes swell and are red. I do have horrible allergies, but sometimes I have the eye problems with no other present allergy symptoms.

- I get sick way to much. Pretty much whatever bugs going around, I end up catching. No matter how much I wash my hands and take precautions. I also get sinus infections (horrible ones that last a good few weeks) at least twice a year.

- I have ringing in my ears that comes and goes.

- When I was 12-14, I would get a rash on my back, that would produce huge welts. They would itch so bad and oatmeal baths, benadryl cream or meds wouldn't help. At the same time the palms of my hands and soles of my feet would also itch horribly, but I don't believe the welts were present.

- When I was 14 I had what is believed to have been mono. It started at softball practice when I tried to run to first and my ankles felt like they were breaking. It then progressed to me being in bed for close to five weeks, sleeping 20+ hours a day, my throat swollen with a weird fungus issue (thrush I think?) and my mother having to spoon feed me mashed potatoes. Not exactly how you're supposed to spend the so called "prime years" of your life.

- Most recently, around the fourth of July, I became very ill. I had muscle/ bone aches all over, a fever of 103, was doing to hot/cold things, was very disoriented at times, my throat was swollen all down through my neck and I was vomiting almost constantly. At the first sign of this, my swollen throat led me to my family doc. She said its my allergies, but gave me an antibiotic. Then came the fever a few days later in the middle of the night, so we went to the er, where I was told it looks like strep throat, though the culture came back negative. She put me on a different antibiotic, and I went home. On the fourth my fever had gotten even worse, so we went back as directed. But this time, I didn't even recieve an i.v of fluids, I just laid there in pain and discomfort for hours, with them only feeling generous enough to give me tylenol, and send me home telling me nothing other than "take 2 tylenol, no more than 3 times a day" I think I could have figured that one out on my own.
On the second week of dealing with this, it was back to the family doc. Where, I got put on a third antibiotic. Still, no help. It then started to sowly improve and just went away after about four weeks.

With all these physical problems I have been experiencing, it only makes it worse because I also have been diagnosed with Bipolar Dissorder. I did not have the best childhood/adolecence, I was sexually abused by my step father from the age of about 10 to 12 or 13. My little sister and I were taken away from my mother, who then chose to stay with him. The state had taken the case to court, and it went on for three years with no ending result. Once the court mess went away my little sister went back and lived with my mom (and him) and he is still unfortunately apart of my family today. These events are no doubt in my mind contributed to my diagnosis and some of my problems. I would have bad mood swings, horrible depression, be up all night, cry for no reason... again, not a great way to spend my childhood and teenage days. I have been through therapy, on medications, and throughout the years have learned to manage it pretty well, and aside from feeling like crap almost constantly, I would call myself relativly happy, at least as happy as this crappy economy and world events will allow.

However, and I would like to know if anyone else has experienced this, when doctors look at me about the things I've described I get one answer. Its my depression. I get told that, get put on an anti depressant, and sent on my way. My family doctor just blamed everything on my allergies. Thats what made me feel like fainting and vomit, and ect. Needless to say I've grown extremely frustrated. So we found an interist, apparently one of the best doctors around (well, an hour and a half away). I was so excited because I thought that this was it, I'm going to find out whats wrong and be able to enjoy life.... well after three visits, I have found myself more dissapointed than ever. Prozac, and Imitrex. Not to my suprise, these things didn't work. So what was his solution? Celexa, Midrin, and a medicine for nausea.... apparently this is going to be a "home run" and he didn't even feel the need to set up a follow up.

I am frustrated. I wake up, everyday in some sort of pain. I was very active when I was younger, in dance, softball, volleyball, I was one of the boys out side from dusk till dawn trying to keep up with my brother and his friends. I was happy. Now, I find myself with no friends, and I feel like I haven't spent a day outside for over a year. Not because I don't want to, but because the sun/ heat will make me feel sick. Or my allergies will flare up to where I can't breathe. Or, I just hurt so bad that the only thing I feel I can do is sleep. I am unable to live the life I want to live. I missed out on much of school, having to graduate from a home school program, and am maxed out on my sick days at work. All my college classes I start off strong, then I will have a really hard time with the pain and sickness that I can't do it and though I start off with and am capable of A's, I get incompletes or fail. I just would like a doctor to at least look into other things, instead of just saying its depression and pumping me full of drugs. I am tired of bringing things up that are of concern to me, and having them being blown off for no big deal... I really just don't know what to do anymore.

With all my research, I have come across lupus many times. I was just wondering if any this stuff (and sorry there was so much of it) sounds like anything any of you have/had experienced, and if its something that I should go further with, or if I really just am a crazy, depressed person who really just needs to get a grip. I will fully accept everyones opinions, even if they do point to the crazy thing.... I just want to feel better, and don't know where to turn.

thank you so much to anyone who took the time to read all this rambly mess....

-Missy.
 

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Hi Miss,
Sorry that you are feeling so bad, alot of what you are saying i can relate to.
What tests have you had done? do you know the results?

You need to write a daily diary of how you are feeling, put done everything even trivial things, pain scale 1-10 and get copies of all the test results that you have had done.

If you are not happy with what your DR has said then change Dr's.

There are many of us going through what you are, it is frustrating and scary, especially when now one believes you. Been there, brought the t/shirt and still going through it, Just keep pushing.
I am getting to the stage where, if after seeing my Dr next week and he does not come up with some answers, then i will make an appt to see him every 2 weeks, (Which i know will tick him off) until i get what i want, which is answers.

There is something clearly going on with you, ask for a referal for another Dr if that's what it takes.
I wish you well, rest as much as you can, but keep pushing.
Big Hugs, Hun.
I know what your going through, as does many of us on this site do as well.
Take care, Sand.....
 

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Discussion Starter · #3 ·
I've been the the Head Pain Institute in Ann Arbor when I was 16, where I had tons of blood work done, saw a physical therapist, psychologist, had CAT scans, a heart bubble study, and possibly even other things that came with no answers.

I've been to a neurologist, but again, nothing.

I've had ultra sounds of my abdomen, been to two gastros, with again, nothing done but blaming it on depression, making me feel as if they are saying its all in my head.

No doctors seems to think the symptoms are connected, yet no one can explain (or at least to me a valid one) for any of them...

I'll probably be looking for a different doctor, but it is definately getting to be a very tiresome and stressful process that is leaving me drained and down. Trying to make it as an adult is hard enough, this just makes it seem impossible....

Thank you so much for your reply and support. It helps alot :)
 

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It's hard growing in this day and age, but when you have to cope with an ongoing illness as well, i feel for you Hun.
It's bad for alot of us at any age having to deal with something that the Dr's just don't see.
I was diagnosed with discoid lupus in 2000, i was 36. and it has been a gradual progression of syptoms since then, and yet some test results say yes it could be SLE or SJOGRENS, but the Dr's say no. are they waiting for some other test to show positive before they diagnose maybe. But as people and patients we should not have to put up with beiing shoved from pillar to post to find out what is wrong.

Do you know whether they have tested you for Autoimmune disease?
If not, ask if they can, but don't mention that you think it maybe lupus, just that you think it may be autoimmune related, DR's hate it.

There are many more people on this site that are far more knowledgable than me, and will give you more advice.

As you have read Lupus is a complex disease, and everyone is different in what they experience, but many things are the same.

What has your Dr's said?

Push for your test results, all of them.

Please let us know how you are getting on.
Try & rest, and try not to stress (hard i know with everything that is going on).

Big hugs,
Sand.
 

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Discussion Starter · #5 ·
The doctors just maintain the symptoms aren't related, and they are just symptoms of my 'depression' or allergies. When they DO do blood tests, nothing apparently grabs their attention. But mostly it seems like no one sees the need to look any further. Everything thats been done has come back normal.

Everyone just tries anti-depressants, I feel slightly more motivated, but still feel like crap. For my joint pain I was told to take ibuprofin.... stomach problems immodium... and most the time, none of these things ever work! thats why I have been going to the doctor! everyone is just trying to mask the symptoms, when I want to know the cause.... isn't that what they should be looking for? I'm scared to death that I have some crazy disease that may one day get horribly bad, and no one is going to catch it until its too late. Its hard to plan a future, when I have no idea what so ever is going to be happening with my health. And all indications point to the fact that it will only get worse...
 

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(((Oh, Missay!))) How awful! I applaud your efforts at getting a dx--don't give up! I don't know what is causing your symptoms, but I do not believe it is depression and allergies. I have bipolar depression, and it is well-controled with meds. But, I too, have gotten (and accepted) that depression was the cause of, what has been for me, 20 some years of fatigue. There were times when I was sure that I was not depressed, yet that was the only explanation that was offered.

Now with epilepsy, anemia, high bp, migratory joint pains, low grade fevers, and a + ANA under my belt, I'm seeing a rheumatologist. And perhaps you should, too. I will no longer accept as fact that, as a bipolar, I am doomed to sleep my life away.

My advice? Don't give up! As Doris said, ask to be evaluated for an autoimmune issue, but don't suggest which one you suspect it could be. Don't accept the "treating symptoms" approach--it's backwards! You are a strong young woman. Hang in there!

1tiredmama
 

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Hi Missy and welcome to the forum

Im very sorry to hear about how hard things have been for you for so long:sad: Like the last poster I too applaud you at your efforts to get a proper diagnosis and the right treatment. You obviously have tons of inner strength and this will stand to you.

Its good that your doctor seems to think the symptoms are connected. Thats a big step in the right direction. Do you know what blood tests were run already? The main starting point for anyone testing for autoimmune problems is a blood test called the ANA (Anti Nuclear Antibody). Your doctor can order this test. In the vast majority of cases with Lupus this will show as positive - although bear in mind that there are a small percentage (about 3-5%) that will have ANA negative Lupus.

If you get a positive ANA this is sufficient enough to get a referral to a Rheumatologist and this is the specialist who is more versed in autoimmune conditions like Lupus. He or she would then go on to run more specific tests. Also it might be an idea to see if you can get some of your painful joints xrayed to see if there is any joint damage or bone erosion. If there was this would be more indicative of Rheumatoid Arthritis for example.

You have done well to recall all your symptoms. Do you keep a diary? If not, start doing that today. It will be helpful when you do get your appointment later on. Rank your level of pain (on a scale of one to 10) and more importantly what the pain prevents you from doing. Its easier for a doctor to understand when you say 'I cannot walk up the stairs sometimes' or 'I cant stand up from a chair without assistance' rather than 'I have very painful knees sometimes'. Its just a way of presenting your symptoms which is easier to understand.

You mentioned that your skin gets very hot and red at times. Have you noticed that this may be connected to being under fluorescent lights for example? Certainly for me I cannot be under these lights for any more than a couple of minutes. otherwise I get symptoms like you describe. People with Lupus can have photo sensitivity to these lights.

Stick around here Missy and we will help you all we can to get some answers. There is a wealth of experience here and plenty of people with stories like your own of taking years to get a diagnosis. Its great that you are taking charge of this and you sound very determined. Well done on that! This forum will help stiffen your spine for the battle ahead and the members will be able to advise and guide you on your journey.

Take good care and looking forward to getting to know you
Joan:rose:
 

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Hi Missy and welcome to the site.

I must say your Intro post was great and really allowed us to get to know you and what is going on with you. I am so sorry that you are so young and dealing with so much.

I do think you need to get a new doctor that will listen to you and not blame it on bi polar, depression or tell you it is all in your head. I will say that a lot of us have been told that in the past and with time it proves not to be true at all.

You know your body best and if you feel something is not right then push forward until you get answers. It really is about finding the right doctor who is willing to listen............really listen to what your saying. I am curious does anyone in your family suffer with a auto-immune illness that your aware of?

Keep a daily journal of your symptoms and triggers too. Also, taking your temperature the same time every night helps and record that as well. Take any pictures of rashes as they crop up, etc... This is helpful when you go to a new doctor.

I am sending you hugs and really feel for you. I hope you get some answers and once you do and get on the right meds you will feel better. Auto immune things can take years before they show in blood work.

Hope to get to know you better and join us in the chat room sometime.:wink2:
 

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Hello Missay and welcome :)

I can't add much to what the others have said and Joan has described the bloods etc. that would need doing. I understood that your docs DIDN'T see any connection. If that's the case have you ever tried just gently suggesting to your GP "do you think it could be something auto-immune?". I wouldn't ask them outright if they think it might be lupus, it's too early to say that but you have plenty enough unexplained symptoms to warrant getting an ANA test done and even if that test comes back negative, I would still ask for a referral to a rheumatologist.

When getting that referral, make sure you get to see an auto-immune specialist - you have been through enough without having to put up with a doc who isn't specialised. You can ask here on the find a doctor forum for recommendations in your area (when I say area, remember it is well worth traveling a bit when it comes to a good rheumy).

Unfortunately, even for those who don't have any depression problems or difficult past issues, depression or stress are very often thrown out at us as "reasons" for how we are feeling. It is a major problem for people who have seemingly unconnected symptoms and, I would say, especially a problem for women when faced with male doctors (though there are some great male docs out there of course :lol:).

I remember my GP saying to me "don't you think that you are rather overworked with everything that's going on?" - it wasn't the first time I'd heard it and my doc is lovely but I simply took a deep breath and said "look, I realise that I got divorced last year and you might think that I'm overworked or stressed, but my colleagues lives are no easier than mine and yet I can only barely manage a three day week, I don't clean my house, I don't cook and have a very supportive partner... don't you think that my colleagues too should be suffering as much as I am if it's overwork?" He had to agree that I had a point!

Keep asking questions, keep pushing and keep us posted on how things go :)

Katharine
 

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Hi Katharine :)

Sorry Missy... being sleepy this morning I misread the following

No doctors seems to think the symptoms are connected
I thought it read 'My' instead of 'No'...

That'll teach me to go and get my coffee before I answer posts :lol:

Luv n stuff
Joan:rose:
 

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Hi Missy, welcome to the forum. I am sorry to hear that you have experienced so much and at such a young age. The others have given you excellent advice. The only thing I could add, would be if your doc won't refer you to a rheumy, could you try asking to be referred to an immunologist for your allergies? They will pay more attention to any bloods that might be abnormal.

Keep going you will get there!!

Deb
 
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