new and confused as well as nervous!

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kaitlynn elizabeth
New Member


Date Joined Mar 2012
Total Posts : 17
   Posted 3/27/2012 7:47 PM (GMT -6)   
Hi, my name is kaity. I'm 20 years old. I've always experienced strange symptoms that seemed to be unrelated to me, and I always chalked it up to other issues of mine that I know i have, or just assumed I was being paranoid and dramatic.
Well, late December or very early January, I started to experience joint pain all over, which gradually got worse and worse. I've always been one to crack some joints every now and then nothing excessive, but i felt pain and stiffness literally all day, so I've been constantly cracking and popping everything I can in hopes of relief. I figure it would just pass and I'd tough it out. I was and still am extremely fatigued, experience excessive daytime sleepiness where I cant help but drift off, headaches, I've always had gastro problems since as long as I can remember, and many other various symptoms. I decided to go to the doctor once I started having hunger pains, yet found nothing appealing and if i were to eat, i felt like i would vomit and then lost about ten lbs in about a week or so. I found that a little alarming so I went to get it checked out.
Anyway, he said i probably have an ulcer and based on my symptoms I may have an autoimmune disease such as lupus or rheumatoid arthritis, so he took blood work. Few days later i found out that my ANA levels were only slightly elevated. So, he referred me to a rheumatologist.
That was about 2 weeks ago. On this past saturday, I had to go to a walk in emergency care clinic because I was in very intense pain which made me unable to sleep the night before so I was exhausted and in very bad pain. The doctor there said that I have hypermobility of the joints and that I have caused arthritis in my shoulders already. He seemed like a quack to me honestly. He said he thinks im too young for such problems and doubts its lupus or anything like that, and said he thought it was an STD that causes joint pain and such. so he did a pelvic exam and also took blood work. He called today said my blood work came back and I was completely negative for my ANA levels and rheumatoid factor, so that it is NOT an autoimmune disease. He is going to get the STD test results back either tomorrow or thursday and he'll let me know.
That made me super irritated, since I have found online and actually via this site that your ANA levels do not need to be elevated to have lupus.
But, I have my Rheumatologist appointment tomorrow....
I'm pretty nervous and stressed out about it. I know something is wrong with me, it is NOT normal for a 20 year old to be experiencing this much pain and other such debilitating symptoms and im stressed thinking that no one will be able to give me any answers.
Also, im nervous because I have no idea what to expect at my appointment tomorrow.
If anyone has any insight, words of advice, or can help educate me more about lupus, these blood tests, and what to expect at my appointment tomorrow, it would be greatly appreciated!
Thank you for taking the time to read all of my story.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 3/27/2012 7:51 PM (GMT -6)   
Please read our introductory post "Lupus Resources" - it gives lots of hints about what to bring to your rheumy, what to expect, the whole works. There is a link in my signature. Lupus and anti-inflammatory diseases are rheumatologist specialties, I would not put much faith in a doc-in-the-box.

Hang in there, and feel free to ask away!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

kaitlynn elizabeth
New Member


Date Joined Mar 2012
Total Posts : 17
   Posted 3/28/2012 1:17 PM (GMT -6)   
Thank you for your quick response!
I am back from my visit with the rheumatologist. I'm a little disappointed honestly, with myself and the doctor. When I first got there, I stupidly forgot my ID and insurance card, so I had to go back home and get that. Then, I have been meaning to retrieve my blood labs from my primary care doctor but I have a poor memory and have what I believe to be similar to lupus fog making it hard for me to concentrate and I am also dx with ADHD so I have added difficulty with focus and memory. Needless to say, I never got them and didn't have them today for the rheumatologist to review and she can't do anything until she does have them.
She seemed very rushed or something, often cut me off, and I just simply got strange vibes from her. So that was a little disappointing on her part. I guess I was nervous and even slightly indimidated because of the vibes I got from her and was disappointed and angry with myself for being unprepared.
Anyway, what she did do was examine some of my body. She looked mainly at my wrists, hands, knees, and feet/ankles. But I don't feel as if she were thorough enough maybe. I mentioned that my shoulders are also in a lot of pain and that I have hyper mobility of the joints and constantly am popping my left shoulder, which means I am literally dislocating my shoulder and then popping it back in. With my right shoulder I am always grinding it. She didn't seem interested and barely looked at them.
She said she thinks that I have rheumatoid arthritis and not lupus. She said I definitely have tenderness and swelling of my hands and wrists which is why she believes it to be RA.
I truly feel that she is wrong. I really believe that it is lupus. My symptoms are almost exact to lupis. But RA has so many similarities, can anyone please explain the difference of lupus and RA?
I am scared, stressed, frustrated, EXHAUSTED, depressed, andobviously in severe pain almost constantly. I feel so helpless! :(
I am in so much pain that I literally was unable to sleep last night. This is not my first sleepless night due to pain. I am low on percocet, and even that barely helps. Literally nothing else helps at all. Percocet has been the only thing that makes it a little more bearable. I only have five left, which will only last through tomorrow. My pain is literally debilitating and that worries me because I am a young single mother to my soon to be two year old son and I attend college at nighttime. Many times I have to walk to and from school with about maybe 5-10lb school bag. Then it makes it hard for me to even get school work done. And I am also concerned because Friday is my sons birthday and we are spending the day at the zoo, meaning lots of walking and id like to feel well and in good spirits to enjoy our time out.
Does anyone have pain management suggestions?
Also, what tests can be done to distinguish lupus from RA?
Thank you once again for reading my lengthy post...I'm just stressed and confused and venting. :(

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1470
   Posted 3/28/2012 3:10 PM (GMT -6)   
Hey girl! First off, did your rhuemy run any blood work? If not, I would deffinatly find another doctor. Being the first time you see her, she should have run lots of blood work. Also, my rhuemy always does a full body. She examines my toes up to my neck, all my joints and muscles. When is your next follow up with her?
She said your swollen, did she give any anti inflammatories or medications to help?
Amy
Lupus Moderater


dialysis from lupus nephritis

kaitlynn elizabeth
New Member


Date Joined Mar 2012
Total Posts : 17
   Posted 3/28/2012 3:29 PM (GMT -6)   
No she didn't run any blood tests. She said she needs my previous labs first and then I. Have to come back and shell do additional blood work and go from there.
She didn't rx anything for pain. A. I can't really take nsaids because I have an ulcer. And B. She said she doesn't know what she can safely rx me with out blood work on my liver and kidney functions or something like that...
Running very low on percocet which is the only thing so far that even slightly helps...idk what to do...
Also, what's the difference between lupus and RA? What tests can be done to differentiate between these two similar diseases?

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/28/2012 3:48 PM (GMT -6)   
The pains and swellings of lupus is a lot like RA, but in RA you have a deteration of the joints.

The ANA test is just the beginning test. You'll have to have many more blood tests and Xrays to determine if it's RA. If there's no deteration then they usually say lupus.

She sounds like she doesn't want to do anything really with you until she has your records.
Joy

kaitlynn elizabeth
New Member


Date Joined Mar 2012
Total Posts : 17
   Posted 3/28/2012 4:36 PM (GMT -6)   
Yeah I suppose so, but she really wasn't all too thorough whilst examining me. Barely paid mind to my shoulders which is one of the main sources of pain. Didn't look at my neck or back or hips either. But I do have an appointment with another rheumatologist in may. I couldn't wait till may, so I found this doctor. So I ve decided to keep my may appointment as a second opinion.
Until then, my main concern is honestly the pain. Its so severe and highly impacts my daily ability to function, most of the time that is. Sometimes it will lessen and I am capable of doing the things I need to get done. But, that is rare :/

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1470
   Posted 3/28/2012 8:13 PM (GMT -6)   
make sure she runs a rhuematoid factor. The tricky thing is you can have a postive rhuematioid factor but not have RA. You need a skilled rhuemy to tell the difference. My first apt with my rhuemy ran fresh bloodwork for herself to know what was happening at the moment, not relying on blood work from a few weeks or months ago. I really wish they would have checked it again this trip. That way you could have some relief from your pain.

Are you able to take prednisone? I am not familar with ulcers so not sure. But most people can take it and it relaly does help so much with joint swelling and pains. Maybe call and ask if she can presribe a dose pack for you?
Amy
Lupus Moderater


dialysis from lupus nephritis

kaitlynn elizabeth
New Member


Date Joined Mar 2012
Total Posts : 17
   Posted 3/31/2012 6:11 PM (GMT -6)   
Yeah. She hasn't run any new blood work yet.
My primary doctor did. My ana level was elevated, low but still elevated. I think it was 1:80, if I'm remembering right. He said my rheumatoid factor came back normal. He thinks it is more than likely lupus.
I went to a creepy quack of a doctor at a walk in place bc I was in terrible pain. He thought it was STDs. So he checked for that which came out negative just as I figured. He checked my RF and ANA and said they both came back negative.
This rheumy seems to think its more RA than lupus. I have an appointment with her again coming Wednesday. Also, I'm getting my xrays on my hands and wrists done Monday. how will the xrays assist in diagnosing?
I'm very wary of taking prednisone, other steroids, and other traditional meds for lupus bc of the negative side effects that come with it.
I think id like to try cymbalta first. Hass anyone had experience with cymbalta or any added information?

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/31/2012 6:21 PM (GMT -6)   
The xrays will show a change in the shape of the joints.

I'm only on a 6 day steroid pack when I'm in a flare I can't tolerate. Most of the time my mobic tames the pain down to a 3 on a scale of 1-10 for me. When it's worse I take a tramadol. The plaquenil (a DMARD) helps a lot with the swelling and inflamations.
Joy

kaitlynn elizabeth
New Member


Date Joined Mar 2012
Total Posts : 17
   Posted 3/31/2012 6:35 PM (GMT -6)   
Is it possible that I've already done damage to my joints in the last few months? I mean I've usually always found it necessary to crack and pop joints, but its only been completely odd and unbearable for the last few months. She did however notice tenderness and swelling in my hands and wrists.
I heard on tv the other day doctors talking about methadone to treat lupus pain? Any opinions. Clearly would only be taken when absolutely needed. I'm hoping that cymbalta will help more than anything

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/31/2012 9:05 PM (GMT -6)   
I don't think you could damage your joints in just a couple of months popping the joints. It takes several years of doing it to cause it from what I've heard.

Methadone is a heavy duty pain killer with some serious side effects. I would only take it if I had nothing else working for me (including a knock in the head).

Here's and article I found on it.
(Just copy and past in your browser.)

http://www.bing.com/health/article/goldstandard-GS82/Methadone-oral-solution?q=methadone&qpvt=methadone
Joy

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 4/1/2012 7:55 PM (GMT -6)   
Please take some time a few days before your appointment to gather and review all the items you need to take with you to the appointment. It is better for you to focus on what you know (how you feel and what meds and tests you have had) than to guess about what meds may or may not work for you -- the med bit is the Drs job. Mentioning a med right off the bat to them is kinda like saying "I don't really think you can help me so let me tell you what to do" -- would you want to help someone that came to you like that? That may be why it seems the Dr isn't that interested -- without you doing your part, s/he can't do theirs.

If you follow the link to Lupus Resources in my signature you will see of list of things to do before the drs appointment that was gathered from many members of this forum. It may help to have go thru this checklist -- I found it calmed me done to follow it when I first got here as well as helped me get everything together.

Hope you find some help soon,
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

kaitlynn elizabeth
New Member


Date Joined Mar 2012
Total Posts : 17
   Posted 4/1/2012 8:41 PM (GMT -6)   
I understand that completely...I've been on prednisone before and I highly dislike it...and the side effects worry me for a few reasons. The reasons being it may cause irritability and aggressiveness, emotional ups and downs basically...I. have bipolar type one, severe anger problems, anxiety, and borderline personality disorder. I've been better at managing my anger in the last 6 months or so, and I've been known to become violent...I don't need anything potentionally worsening that. And also, I am anorexic and have severe body image issues...to those who don't have an ED this seems very ridiculous, but it increases appetite and weight gain and I'm at a point where I guess I don't feel ready to address my ED.
I guess I should explain this to the doc and hopefully she can understand my concerns...
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