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Old 05-08-2007, 05:12 PM   #1
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Post Is it lupus?

So here it is. I've been ill for a little over 2 years now. When it all started I was diagnosed with having fibromyalgia. After alot of testing, one of my three doctors suggested I had lupus. Unfortunately I was going to a big clinic with three different doctors at the time and the other two thought I was just deprested and that the depression brought on the physical pain. I started taking anti-psych meds and medication for inflamation. After a year of them telling me that it was all in my mind I switched drs. The new dr. did alot of testing and started me on another regiment of medications. The new testing showed that I had a very high sed. rate for my blood, which she said explained the inflammation and the pain. I started taking ultram 3-4 times a day, to try and ease the pain. In the 9 months I was at her practice, my symptoms only became worse. I brought up that a previous dr. thought I may have lupus. So I did more blood testing. I found out that I am hypothyroidic which may explain some things. I did not however have a positive ANA test so she said that there was no way I had lupus. My grandmother and 2 of her sisters have lupus and almost all of my symptoms are the same as what my grandmother said she had expierienced. My symptoms were: fatigue, generalized weakness in my muscles, joint pain and swelling, hair loss, dibilitating morning stiffness lasting 1-3 hours, lack of energy, rashes, raynaud's phenomenon, mouth ulcers and sores, and inflammation in my instentines. I did a regiment of prednisone to see if maybe my body has some sort of auto immune disease. I started to feel better within a few days then as i was weening myself off of it i just started to get sick again. My doctor decided to not treat me anymore after my frusteration of not getting any answers. I started seeing a new doctor over a month ago who refuses to give me any type of medication for pain. I had a colonoscopy done which showed that I have inflammation in my intestines, so I started a medication for that, but that problem flares up alot these days and it is just so painful I can't do anything except curl up in a ball and wait for the pain to go away. I started seeing a pain clinic which also denied me any type of pain relief. So I went back to my family doctor and pleaded for something to ease the pain. He told me that he would not give me any type of pain medication at all. His reason he told me was becuase of my age (I'm 24) and he said that pain medication and young peopel always leads to problems. So for about two months now I have been in dibilitating pain. I even had to have someone else come to my hosue to care for my children because I couldnt get out of bed. That weekend I was taken to the ER where they did their standard testing and the only thing out of the ordinary was my high sed. rate. They gave me a shot of something that didnt really do anything and I went home feeling no different than when I gone in. I am going to go see a rhuemetologist in July, but i dont know if it will do any good. The pain clinic I had went to started me on a regiment of cymbalta, which did not help me feel any better at all. My family dr thougth it was great that I was starting this particular medicine. I didnt. The side effects were awful, instead of just being in pain i was now all spaced out and in pain. I've been taking alot of iburprofen but it doesnt do much and gives me awful stomach cramps. I really don't know what to do anymore. All my doctors seem to just think that I am crazy and depressed. So I made an appointment with a psychiatrist for an evaluation and she said that I was mentally fine from her perspective. I cant work, I cant sleep, somedays I cant even get moving around for hours. I hate waking up in the morning because the pain and swelling is horrible. I can even feel spasms going down my back into my legs. I'm not sure what I should do. The new doctor seems to think there is really nothing wrong with me. But I know my body adn I know something is wrong. I used to be a really active person, these days I have just become this shell of a person. I'm not trying to be lazy, I want my life back but I physically cant do it. So if anyone has any ideas at all or similar expieriences please help. I'm tired of being sick and tired all the time.

 
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Old 05-08-2007, 05:31 PM   #2
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Re: Is it lupus?

I was just reading some other people's threads and noticed that I do have other symptoms I never realized to be conneted with lupus. I started having mild seizures awhile back and saw a nuerologist where I had a positive EEG testing showing seizure activity. I was diagnosed with noctural myoclonis (not sure of the spelling) I was taking depakote for it but just recently had to stop due to the side effects. I also have severe anemia and take medication for that as well. There's some other things as well but they could be due to my hypothyroidism.

 
Old 05-08-2007, 08:09 PM   #3
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Re: Is it lupus?

Heather, Welcome. I'm sorry to read about all you've had going on---and your frustration. I know that drill, too.

There are a couple of excellent rheumie/authors who could shed some light on your questions. Look in your local library or bookstore for either Dr. Daniel Wallace or Dr. Robert Lahita. Both cover lupus & its close cousins thoroughly.

I can't stay on long & will be out tomorrow. But I want to quickly describe the biggest pitfalls I ran into:
(1) inadequate dermatologists. I shad photosensitive, nonscarring rashes on my arms & torso, but never a facial rash. In their mature form, lesions were targetlike: red circles with clear centers. (Earlier, for the first 4 years, they were only raised red bumps.) Didn't itch. Multiple local dermies biopsied these 4-5 times, but FAILED to do immunofluorescent stain tests, which light up in a really definitive way for LUPUS rashes.
(2) failure of GP's & local rheumies to consider *all* types of lupus. It turned out that I had a "subset" called SCLE = subacute cutaneous LE. In it, you can have enerything seen in classic SLE, but the odds of kidney & CNS problems are lower than in SLE, it's thought.
(3) failure to see past my *negative* ANA. I was always ANA-negative. In SCLE, this happens maybe 1/3 of the time, I was told. My drs. should have ordered ALL the antibody tests, not stopped at ANA. I was positive for anti-Ro, it turned out.
(4) failure (mine! ) to seek a rheumatologist in timely fashion. I was treated for 20+ years for severe irritable bowel syndrome, but I had a lot of other things going on (anemia, migraines, hair loss, weight loss, rashes, back & joint pain, elevated sed rate, low-grade fevers, fatigue, etc.)

Have you seen a rheumatologist? Had your skin rashes biopsied? Speaking of rashes, what do yours look like? Do they appear after sun exposure?

Would love to hear more. Catch you later, I hope. Hang in there! Bye for now, from Vee

 
Old 05-08-2007, 08:37 PM   #4
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Re: Is it lupus?

Everything you described in your #4, is exactly the same with me. I was only tested for ANA and it was negative. Thanks for all the info. I am going to have to do some research on my own about the types of lupus and testing available. Sometimes it seems like doctors think I am faking this all, and thats where I get really frusterated. They've done these few tests on me and since nothing major has come up they just keep telling me its something mental not physical and place me on all of these different depression and anti psych meds. I've been to one rhuemetologist, it took me three months to get the appointment, then i had blood tests done and it took another 4 months to get my next appointment, and at that appointment she said they wanted to do more blood tests. It ended up being a waste of my time and costing me alot of money, and to top it off the place was 2 hours away. I found another rhuemetologist but the earliest I could get in there was the end of july. I know I'm not crazy and that the physical pain I have is not something i've conjured inside of my head. Its got so bad lately I've considering checking myself into a hospital somewhere, but I dont think any good would come of it and I would just waste my time and energy doing something like that. I dont think I am taken seriously because of my age. It doesnt make any sense, ill is ill whether you are 24 or 64. I just hope I can get this figured out soon because I can not live like this.

 
Old 05-17-2007, 06:00 AM   #5
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Re: Is it lupus?

Hi Heather,
I feel like your post is something I wrote. I am going through the exact same things...Lupus in immediate family. I have so many symptoms it is crazy. SOme of my bloodwork off. Elevated sed,lupus test borderline..etc. I have suffered for yrs. I am only 40..look young. I am a married Mom of two kids. It is so terrible to be told they think it is in your head. Anxiety etc...I am going through all of this again right now.I cannot tell you how much I understand and have gone through all the same things. I actually had 1 specialist tell me it was Lupus...then another not so sure!! Needless to say, I DO have anxiety!!! WHat the heck do they think we will feel like? I have trouble walking some days and my arms are numb now! I could go on and on about the symptoms...but I still do not have answers. I hope you are doing well! If you come up with any answers..let me know! I do understand how you feel at your wits end. I do too!!Take care of yourself and feel free to moan to me if you need to. I will listen since I understand!! : )))))
Michelle

 
Old 05-17-2007, 09:55 AM   #6
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Re: Is it lupus?

Thanks for the support! The last two weeks I have been getting all of my medical records from hospitals, doctors, clinics, etc. Since I have started reviewing them, well all I can say is that I am shocked. There is so much evidence backing up this diagnosis. I have alot of weird bloodwork, but still a negative ANA test. One of m y test results were really shocking. I had an IgG test done for EBV (mono), about a year ago. The referance range for a negative result is anything under 100, from 100-120 its equivocal, over 120 is positive, meaning that at one time the person had mono and their body has produced the antibodies to fight against mono. My test result was 2094, and I have never had mono. I did a little reasearch on this and found that high numbers like this usually indicate infection,disease such as CMV (which I also tested positive for),leukimia, lymphnoma, rubella, hepatitis but more than likely lupus. There are all of these other blood test I have had done as well that tie in with lupus. I really am doing my homework on this. I started seeing a new doctor last month who refused to keep prescribing my other medications because he said there is no medical evidence suggesting that I am sick. This doctor and the pain clinic i was seeing have all secretly diagnosed me with being depressed. And everytime I go in, they dont want to talk about or listen to the symptoms I am having, rather they write me out a script for some anti psych or depression medication. I did that for two years. I am NOT depressed or crazy. There is something going on with my body that I myself do not fully understand, but I intend to. If I go to my doctor today and he is not willing to treat me the way I need to be treated then I am walking out and going to find myself a new doctor, which I hate doing because every doctor means starting over from the begining again. One thing I have learned is persistance, and not letting myself believe things about myelf that arent true. I've been through 6 doctors, 4 surgeons, 3 pain clinics, 1 neurologist, 2 physical therapist, 1 psychologist, 1 internatlist and .5 rhuemetologist. All it seems anymore is that doctors want you to get in and out of their office ASAP, and if that means telling you that you are crazy and giving you pills to sedate you thats what they will do.

 
Old 05-18-2007, 08:26 PM   #7
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Re: Is it lupus?

I have FM and your symptoms are the same as mine. I also have a elevated sed rate and a elevated C-reactive protein. I was told sometimes this is elevated in FM...no-one knows why.

From what you wrote in your post I think you have FM and need to be treated properly for it. Have you looked a some of the FM support sites to compare notes on your symptoms and those of others?

The doctors do RX anti-depressants for FM at a low dose because it helps with the serotion(sp). I am on a Cymbalta, a muscle relaxer and a mild pain pill.....does the pain ever go away No but it helps it to be more manageable.

I also have migraines, IBS, extreme fatigue, weak muscles, never feel like I am getting enough sleep,aches & pains all the time, sore throat that comes and goes....and the list goes on and on.

Sounds like you need a good doctor to tell you exactly what you have and why he/she thinks that and give you some explanations.

Good luck and I hope you find relief soon.

Froggyfog

 
Old 05-19-2007, 05:13 AM   #8
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Re: Is it lupus?

Hi, Heather. I saw your latest post. You mention having high EBV on your bloodwork. I did too, but without EVER having had classic signs of mono.

Heather, your first post mentioned RASHES. What do these look like? Feel like? Where do they appear? When? I'm curious about your rashes because for a long time, my targetlike, nonscarring rashes were my best chance at having my local drs. recognize some form of lupus---had they known what they were doing, that is!

My local dermies called only for microscopic labwork to be done. None requested a second level of testing, which, where lupus is a candidate, is IMMUNOFLUORESCENT STAIN TESTING, also known as LUPUS BAND TEST. Dr. Daniel Wallace describes this in his lupus hardcover, which you could find in most libraries & bookstores. (Very helpful book!)

I was finally Dx'ed with the SCLE "subset" of lupus. Anti-Ro was positive, but my ANA remained negative, which happens in an estimated 30% of SCLE cases. So, no, it wasn't classic SLE... But that said, there were dramatic differences in approach, between my suburban drs. and the big-city drs. I finally saw. The big-city rheumie asked me to fax in a full lifetime medical history, in my own words. In contrast, local drs. shut down such discussion, rolled their eyes, huffed, referred me to other specialists (who did the same thing!), etc. They only looked narrowly within their own specialities, not at the whole patient.

I found out afterwards that I really fit the demographics for the SCLE subset very closely. Mean age of Dx: early-mid 40's. It favors women of western European heritage (my family background is mostly English). Etc.

Are you close to any teaching hospitals? Have you had your rashes biopsied, include immunofluorescent stain tests? Have you borrowed the lupus authors from your local library (e.g., Dr. Daniel Wallace &/or Dr. Robert Lahita)? Anyway, just some thoughts... Would love to hear more. Meanwhile, thinking of you, Vee

 
Old 05-20-2007, 12:00 PM   #9
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Re: Is it lupus?

I went to the new doctor again on Thursday and discussed my symptoms. He reduses to give me any type of pain medication, he said its because of my age but I know alot of Drs are real sketchy about giving out pain meds. I took in a bunch of medical testing I had done over the last two years. That weird EBV thing I had, he told me that was normal of people who have had mono. But I swear I've never had mono in my life. I also had a positive ASO titer test and he told me that it was normal to have that in a person with depression or anxiety. I do not have depression, its just something I know about myself. He diagnosed me with androginous depression, and explained its depression but the person having it doesnt know they do. This all does not make any sense to me. How can someone be depressed and not know it? I did get my referal to see a new rhuemetologist. But I feel like nothing has really become accomplished yet. He re-diagnosed me with fibromyalgia and this androginous depression and I was given a script for effexor. I took the effexor only one time. That entire day I felt drugged and out of it, and to top it off I was shaking all over and felt like I was going to crawl out of my skin. I called and told them I couldnt take this medicine and they were a little short with me. I'm sure its a good medication for someone who is actually depressed but its not for me. My first concern is this pain. It is worse than natual childbirth. I dread waking up in the morning because I know how bad it is going to be. As soon as I get up I can feel it running through my body like poison.Then come all the cracks and creaks and body stiffness, sometimes it takes me 2-3 hours just trying to get my body to work. I would say the pain is the worse symptom I have because it is always with me. The rashes are kinda weird. A few times I have got these weird rashes that look almost like bruises.They were mostly on my arms and legs but there were a few little patches on my face. The other type of rash I have is almost always on my arms and face. Sometimes it look like little chicken pox. I also have raynaud's phenomenom which covers the rashes sometimes. My other big complaint is my hair loss. I have always had thick full shiny hair. Now my hair is awful, it balls up in little knots and along my hairline the hair is receding. My right side is worse than my left and goes back about 4 inches more than the other side. All across my head there are little places where the hair has fallen or grown back . Like I said my hair was always really thick so it isnt as noticable as I sometimes think it is. I told my doctor about his hair loss and that when I wash my hair it just starts falling otu in my hands. He told me I have alepecia and that there was nothing he could do for me there, that it was just something that happened. I've never lost hair like this in my entire life and now at 24 my head just decides to go bald. I read up a little on alepecia and people who are diagnosed with alepecia usually lose hair not jsut on their head but in other places usually eyelashes and hair on the arms first. The doctor I am seeing now is really nice but he refuses to hear me out. I hate to have to switch doctors again, but I dont know what to do. I've actually got worse in the last two months. I was diagnosed with IBS (never had any problems until 3 months ago), anemia, low white blood cell count, fibromyalgia, hypothyroidism, androginous deprpession (which I dont agree with). I want to thank you for the names of those doctors, I am going to the library tommorow so I will check those out, also I want to thank you for the idea of the lupus band testing. I had a negative ANA last time I was tested so now I am looking for the other types of testing used to diagnose lupus and SCLE. If you have anymore ideas let me know, thanks!

 
Old 05-20-2007, 07:31 PM   #10
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Re: Is it lupus?

Hi, Heather. I hope you get some good ideas & questions from the books.

Re: your rashes, How long do they last? Do they itch? Do they appear after exposure to sun? Do they scar or depigment?

The three MAIN lupus rashes are malar, SCLE (subacute cutaneous) & DLE (discoid).
* Malar is the "butterfly" on the face.
* SCLE comes in two forms. Both tend to be nonscarring & nondepigmenting. They rarely itch. (a) One is called annular (targetlike), with red rim & clear center. (b) The other is papulosquamous. It looks like posiriasis but isn't.
* DLE lesions scar &/or depigment.

DLE & SCLE lesions can be either localized or widespread.

There are other forms of lupus rashes, but these 3 are the best known & most common.

What strikes me the most is how some of the things you list do NOT fit IBS, FMS, or depression---at least not to my non-medical eye. For example, anemia could go hand-in-hand with IBS, and fatigue & pain with FMS. But hair loss & rashes & low white blood cell count? These don't seem to fit in, to me anyway.

I was in that boat, too. A local rheumie prosed on & on, then told me that I had FMS. So I demanded, "What about THE RASHES?" His answer: I should see a dermatologist. Well, he can't have been listening, because I'd seen 5 or 6 at that point. In your shoes, that's what I'd try to get the dr. to consider: what doesn't fit.

Just some thoughts, to set the stage a bit before you do some reading... Let us know how things are going, OK? Sending my best, Sympathetically, Vee

 
Old 05-20-2007, 07:53 PM   #11
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Re: Is it lupus?

I keep doing the same thing with my doctor, asking why I have all these other symptoms. And the answer I get is that it is "normal". That is something I am not comfortable with. I took a nap earlier this evening and woke out of a dead sleep just screaming from pain. It took me an hour but I made it upstairs to my bedroom and took a vicodin that I had from when I had my wisdom teeth removed. I'm still kinda achy and I feel like I ran a marathon with my joints all swollen and stiff but at least I can tolerate it now. I am suppose to see my pain clinic soon but I know they arent going to give me anything for pain, the only thing they seem to want to dish out are more types of anti-psych and depression medication. I have thought about alternative types of "self medication". For instance I have heard that the use of marijuana is extremely beneficial to people with arthritis pain. I have never been a person to condone this but I am to the point now where I am getting desperate to relieve myself of this pain. Not that I would actually do something like that, I suppose I am just thinking outloud.

 
Old 07-20-2007, 08:50 PM   #12
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Re: Is it lupus?

Hair loss can be from hypothyroiditis.

The rash I don't know about but most of the other symptoms can be all related to the diseases you named.

If you are not happy with your doctor and his/hers assessment then fire him and get another one. You are paying for his service and by no means should you keep going to someone who you feel is not right for you.

Hope you get answers soon.

PS If you keep hearing the same thing from ever doctor it may be exactly what they are saying. When you do go to a new doctor DON"T have your medical records transfer and don't tell them anything your previous doctor has said......that way they are not influenced by previous Dx.


froggyfog

 
Old 07-20-2007, 09:04 PM   #13
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Re: Is it lupus?

Quote:
Originally Posted by Heather_Brennan View Post
I keep doing the same thing with my doctor, asking why I have all these other symptoms. And the answer I get is that it is "normal". That is something I am not comfortable with. I took a nap earlier this evening and woke out of a dead sleep just screaming from pain. It took me an hour but I made it upstairs to my bedroom and took a vicodin that I had from when I had my wisdom teeth removed. I'm still kinda achy and I feel like I ran a marathon with my joints all swollen and stiff but at least I can tolerate it now. I am suppose to see my pain clinic soon but I know they arent going to give me anything for pain, the only thing they seem to want to dish out are more types of anti-psych and depression medication. I have thought about alternative types of "self medication". For instance I have heard that the use of marijuana is extremely beneficial to people with arthritis pain. I have never been a person to condone this but I am to the point now where I am getting desperate to relieve myself of this pain. Not that I would actually do something like that, I suppose I am just thinking outloud.

Heather...I hate to tell you this but this type of pain is what people with fibromyalgia have.....Every morning I wake up (and even in the middle of the night), I feel like I have been ran over by a truck. Every muscle and bone hurts in my body and I can't get moving, my body is stiff and I don't want to move but it even hurts to lay in bed.
I could of swore I had bone cancer because it was so bad. Doctors ran all kinds of lab tests, MRIs and x-rays. I am a nurse so I was able to do alot of research through my medical books and talk with many doctors who I seen everyday at work.
Well now I can no longer work due to the fatigue, pain and memory problems. My life is not the same as it was and some days I still struggle with my new reality.
Was I depressed? NO, not until I realized that I could not fillfull my dreams(due to FM and hypothyroiditis, migraines, etc.) that I had set for myself.

I'm not trying to say I know what you have, but you need to keep a open mind and not assume(like I did with the bone cancer) that you know it is not FM that is causing these problems.

I really am sorry you are going through this and having trouble with your doctors. Like I said in the other post, I would look for a more caring doctor.

By the way I could not take Effexor either....but remember you don't have to be depressed to be on anti-depressive meds....these meds help with pain relief too.

froggyfog

 
Old 07-21-2007, 11:15 AM   #14
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Re: Is it lupus?

Hi Heather,

I have lupus, too, and am jumping in to say that an elevated IgG can also mean Lyme. I got this unwelcome education following a tick bite in May and you won't believe the Lyme symptoms that are similar to lupus, including the hair loss.

Not that I'm wishing Lyme on your at all, but Lyme ticks are in PA as you are, so I suggest you visit the Lyme thread, conventiently located just below this Lupus thread. There is a sticky there that talks about the many symptoms of Lyme. See if anything there sounds familiar.

Wishing you well! Barbara
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