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Posted 7/19/2009 2:07 AM (GMT 0)
Hello.. Here is a short version of my story. I would like to see what you guys  think and would love any advice or tips.

 

I have had these symptoms for about seven years but over the past two they have got alot worse. First of all I do not like going to the doctor at all. The only times I have went in the past was when I was pregnant and when I had kidney stones. That's it LOL.. Matter of fact I have needed my wisdom teeth cut out for years but am scared of dentist so I just suffer through until they go back down. I realize one day they probably won't. Anyways back to the reason I'm posting here.

 

I had a raised rash on arms for many years but seems like the past two it had gotten worse. I was always tanning during the summer months. Well this year I started going about Feb or so. The rash is from shoulder to elbow on both arms. It almost covers my arms in those areas. It is big circular bumps almost looking like ringworms but aren't. Everyone at work just kept asking if they were poison ivy or something like that. Finally I decided to go to the doctor to get rid of it. I made the appointment. The day of the appointment I woke up with a swollen right eye. It had a large knot in it and still does. (inflammed duct) it's about an eighth of an inch big. The doctor decides to do blood work for thyroid, hormones, although I have only my ovaries had everything else taken out fourteen years ago. Oh I'm also thirty four LOL. Anyways he starts asking me about all kinds of things and we come out with these symptoms... pain in neck and between shoulders, headaches, fatigue, stiffness in mornings, muscle aches, popping joints in ankles and wrists. So a few days later he calls me and tells me I have a postive ANA which doesn't mean I have lupus but it's a good start on a diagnosis. He gets me a appointment with a dermy and a rhemy. But they are two months away. Three days later I wake up with both joints in my wrist inflammed, elbows, knees and almost all bones in my feet. I go back in to see him and he tells me to stay out of the sun. He also says he believes i have a connective tissue disease which is lupus or arthritis. He puts me on steriod pack for six days. Seems like the steriod pack makes the pain worse but of course I was taking motrin with it as advice from a friend with severe arthritis. He told me don't take anything over the counter. I get to the point to where I can't grip anything with my hands. I got so bad it was hard to drive. In the mornings I can't walk I'm so stiff. After sitting for a while it's hard to get up.. I want to do so many things but can't because I feel worn out no matter how much I sleep. I also started having trouble sleeping on my sides for some reason. I feel like my hip bones or ribs are uncomfortable to lay on. So I have to sleep laying on back. This may not having anything to do with it.. Anyways I go into his office in tears because I am just sick of it. I have felt this way for years but not this bad. It's like I could tolerate it then but each day it just got worse and worse. For a month a headache each day. I have faint red rash on cheeks but it's not bright red although its in the same place as butterfly rash. So I finally get into see the dermy. He takes a biopsy of the rash on my arms. He tells me it's a classic case of lupus and I could have got to diagnosis from him. He saw I had a few of the same rash on legs also. He said it's going to be SLE instead of discoid because he noticed all my joints inflammed. They still are. It's been two months now and no relief. I was started on Tramdol just fifty mgrams twice a day. I try to only take one. Anyways I go back two weeks later and the dermy that told me I had classis text book SLE tells me the biopsy showed Granuloma Annular. Which is not lupus but it is a autoimmune skin disease. He said there is no cure and it's unknown of the cause. He gives me no meds says it's perm and will never go away. I ask then what would cause my joints to inflam if not lupus. He said Oh no I'm not saying you don't have lupus I'm just saying the rash is a seperate disease. He says usually not related to lupus. He walks out of office. I don't have to go back I guess because he never scheduled me another appointment. He said he would send to rhemy I see him the thirtith of this month. Anways I get home and search Granuloma and on wikipedia it says "associated with SLE". He told me it wasn't. And the website also says all kind of meds that can be given for it. I wish he would have explained more. But it was aggravating to me he said classic case of lupus then when I went back acted crazy and tried to not mention what he had told me. So what do you guys think? It's frustrating to me for sure. I did ask if I could return to tanning salon and sunlight and he said no. It makes the rash really bad after only about fifteen minutes. Lately I have been having alot of stomach issues. Several years ago i was diagnosed with IBS but after my medicine refill was up I didn't go back to the doctor. It seems it has gotten alot worse. I hope my rhemy will help. It's not that I want Lupus but it made me feel better knowing what was wrong. Not knowing it what bothers me because I don't know how to help myself if I don't know what I have. I still have this knot on my eye also. the dermy ignored it. My general doctor gave me lots of differnt eye drops but no help. I guess I need to make appointment with eye doctor? Please tell me what you think..

Posted 7/19/2009 2:11 AM (GMT 0)
Oh yeah also... While eating out at a cafe with lots of lightening my vision became very blurred to the point I wasn't able to see menu. Suffered terrible head ache and my eyes hurt until thirty minutes after leaving. Some days I can see all the veins in my feet and legs. They are huge. One never goes down and one in my leg looks like it has a knot in it but it's soft.
Posted 7/19/2009 2:27 AM (GMT 0)
Hello SmartyPants, welcome to the forum.  Well, it sounds like you need new doctors.  None of them are taking you seriously.  Did you get a positive Lupus diagnosis or is this still being decided?  Your symptoms do sound like Lupus could be a possibility.  Are you on no other medications except the Tramadol?  You really need to get a good rheumatologist!  Sometimes you have to shop around till you find one you like. 

 

You MUST not spend time in the sun or the tanning beds.  Huge no-no.  With Lupus, you basically have to treat yourself like you're allergic to the sun. 

 

Don't trust what "wikipedia" has to say.  Any topic can be written by any person.  It's not trustworth.  Stick with websites that are associated with hospitals or associations like The Lupus Foundation of America.  www.lupus.org. 

 

What is your next step?  You really need to get a solid group of doctors to work together for you.  Also, keep a diary of all your symptoms every day and anything else odd that pops up.  Take pictures of the rashes you get just in case you go to a doctor and that day the rash is gone! 

 

Blessings,

Ginny

Posted 7/19/2009 7:02 AM (GMT 0)
I will see the rhemy on the thirtith of this month so another week or so. I haven't seen him at all. This will be my first time so I am really anxious to see what he says. The dermatologist switched diagnosis on me fast LOL. My regular doctor said I have lupus in his opinion but he really wanted me to see a rhemy to get his opinion since he specializes in diseases like lupus. Obviously I have lupus or rhem arthritis because of the swelling of all joints and limited movement in them. I'm really not sure which I should hope for.. Niether would be great but it's just not looking like that's going to happen. My general doctor did tell me that with lupus the chances of the joint being damaged wasn't as likely as it is with arthritis. So that's the only plus I have heard so far between the two. I knew it would be to easy to just show up at the doctor office and them say this is what it is and this is what to do or not to do. It's complicated. I didn't care to much for the dermy. My first appointment I was sitting in his chair and I thought he was mashing the whelps in the rash and all the sudden he said this will burn, it won't last long but long enough. The next thing I know he is sewing stitches in my arm. I had no warning or anything that he was taking a biopsy. He was in and out of the room in about five minutes. Completly ignored what I said about the knot in my eye when I ask if it was related to the rash he said could get all over my face or not. He just didn't take the time to tell me anything except one visit was "you have classic text book case of SLE, to you have lupus but the stuff on arms is a differnt disease similar to lupus and it's never going away and it's perm. He walked out. So I thought that sucked big time. LOL.. So I really didn't care for him because of his bedside manner. I do really like my general doctor. He has been really good about listening to me and taking it all serious. He was very sympathetic also. I was on steriods and antibotics at first. I had gotten so sick I lost my voice from my throat being sore. The steriods made the rash almost disappear as soon as I came off of them it came back full throttle. However my joints never went down. Today I have another big knot on the side of my index finger. Each week a new joint gets inflamed. I think this all got worse about four months ago. It seems like when my brother was sent to jail for six months I got worse. I was very upset and still am. I have days I can cope with it and other days when I just get so upset. My doctor says that doesn't help at all either. He said if i stay strong it will help me but if i can't I would have to take depression meds which i told him I do not want at all unless it's my only choice. I will only take meds if I believe there is no other way. I freaked when he told me the steriods may cause me to gain some weight. I have a reverse on alot of medicines and am very sensitive to them. That's why I hate trying any new meds also. I have lost thirty pounds thinking it was my diet but now wondering if it wasn't lupus. I have no appeitie most days. Other than tramadol I don't take anything at this point. I was told I wouldn't be put on meds until diagnosis or organ involvement because as of now I have inflammed joints and no organ problems. At this point managing the pain is all they have told me I can do. The side effects of other medicines my doctor says aren't good at all so he doesn't want to start me on it until it's needed. I'm fine with that also. I just have to have something to take the edge off. Tramadol seems to help but I only take what I have to because I just hate taking pills and they make me a bit sick at my stomach at times. I have always been anemic. I am healthy other than that. I am not over weight, don't smoke , and have actually low blood pressure. They are always asking me if my blood pressure has always been pretty low. Which it has. Thanks for the reply. I will keep posted on what rhemy says.
Posted 7/19/2009 3:37 PM (GMT 0)
SmartyPants,

Ginny gave you some excellent advice, and I second what she said about your doctors. You need to find a new dermatologist that will communicate better with you.

Hopefully your new rheumatologist will put you on some meds that will alleviate your symptoms.

I'm sorry you're having such a rough time, and I welcome you to the forum. I hope we can provide the support that you need.

Hang in there,

Pat
Posted 7/19/2009 6:35 PM (GMT 0)

Hi!

and Welcome!

and just for some peace of mind..... what you have been through, are going through, and will be put through....sounds like a classic case in the often frustrating and unbelievable, yes, so many of us have been through it already, the same kind of battle you are, and the we don't want to and can't believe it, world of our autoimmune disease. Take pictures of everything, in good lighting, even use a ruler for scale, and document everything. Ask for copies of every lab test you have in your chart. I wrote a time line, and then narrowed the novel of my sad story down to two typed pages of summary. You are not losing your mind, and just for comfort, medical and nursing textbooks identify lupus as the "great imitator", and teach that it is a disease of ruling everything else under the sun out first. And to be fair to so many of the doctors too many of us have had bad experiences with, our symptoms and lab test proof (which so many drs. rely on over listening to what their pt. is saying to them), come..... and go...... flare..... and subside...... and it's enough to drive a bat.... batty! tongue

hugs,

sue

Posted 7/19/2009 6:55 PM (GMT 0)
Smarttypants,
I have been in your shoes and know it is very frustrating. You have a lot of the same symptoms I had and still do IF I get in the sun, stressed out or have sleep deprivation. I use a daily skin lotion (Eucerin) with SPF and it has really helped me. I do avoid the sun. That has been one of the most terrible things for me b/c we just put in pool three years ago and have a son that plays baseball. Yes, I am the weird one with umbrellas and hats! :)

It took me three months to get diagnosed. Your rhemy will help you... just make sure they specialize in Lupus as well. I started Plaquenil 2X daily and it has made a world of difference.

Good Luck!
Arky
Posted 7/19/2009 8:20 PM (GMT 0)
Thanks to everyone for your replies. It made a world of difference. I have bought a few books from Books a million and started reading on Lupus. I figure I need to know everything I can about what causes it to flare up and what to do or not to do. If they decided I don't have it then so be it. When I started reading the book the author said she had been diagnosed with Lupus and undiagonosed five times. That's crazy but made me realize I'm not the only one. Thank God for you guys to talk to and listen to. I'm thankful that I don't have as bad of symtpoms as some people on the forum does. I can see that as one postive thing. Almost makes me feel like a baby after reading some of the differnt overlapping illnesses some of you guys have on here. I know there is a possibilty of having some of them also but at this point I need to "man" up I guess. I need to look at what I can do instead of what I can't do. Some days that is my attitude and some days it's self pity. I guess that's pretty normal. I was so aggravated this morning at seeing how my used to be tan legs and arms now look so white and covered in rash. Then I read some of the things other people are going through with thier heart and kidneys and thought how silly I was to worry over something so petty. Goodness what I nerve I have huh LOL... I do so good some days on my attitude and other days I get depressed. I have always been very outgoing and happy. Always teasing and love to be around people. Now days I have those times when I don't want to bother to be around a bunch of happy people since my mood isn't happy. LOL.. I mean I think it's changing me slowing and I hate it. My general doctor said if I don't watch I will end up depressed and fo rme to try not to get overwhelmed with it all.

 

I didn't like the dermy at all. He wasn't very helpful. He knew what was wrong with me I guess but he didn't tell me. I mean it's me, my body, and my life shouldn't he take a few minutes to explain to me what's wrong and what to do and not to do from here. I guess he didn't realize that.

 My doctor sent me to this rhemy he said because he is good friends with him and they can communicate with each other to see what the best medical treatment will be for me regardless of what they decide it is.

 

I just wanted to say Thanks for you guys for all the support. It really helps alot. I am glad I have this place to come to. My husband and kids are supportive but ya know sometimes I think they may get sick of hearing about it. They say they don't and they don't act like it at all. They are interested when I talk about it and ask questions but at some point I feel like talking to someone else on the outside may be better because I feel like in a sense it's not consumming all of my life yet. LOL... Crazy I know.

 

I have been doing really good at avoiding the sun. My kids play sports but the bleachers are shaded so that will help. When we go to amusement parks I will go in the evenings and wear long sleeves that are very thin. Maybe that will help. I will do everything in my power to make it not affect them to much. This way I don't think I will get as depressed. I do have to realize eventually though to rest when I need to. I just keep pushing myself to do this and that because I have been reading that building muscle tone is a good way to help with the joints but I need to know the days not to push myself because the next day it's twice the pain.

Thankfully I am sensitive to pain meds also. I can take a 800 milligram of ibuprofen and be knocked out three hours. LOL.. This helps to get pain relief although I have found out that my body is building up a tolerance to some of it.

Once again thanks guys!!! You have no idea how much knowing I am not alone nor crazy has helped me today!!!

 

Posted 7/19/2009 8:24 PM (GMT 0)
Hi Smartypants,

The others have given you great advise, I just wanted to welcome you to the group and add my 2 cents, lol

Your symptoms do sound lupus like and very similar to mine, but I am sure the rheumy will shed more light on that. You are not crazy and these symptoms you are having are real. I had some weight loss too before my dx, I went from about 137 to 118 and I am 5' 6"! I hadn't been that thin since high school. I also suffer with a lot of GI problems that are due to lupus as lupus can attack any part of the body it wants!

On your first visit with the rheumy it should NOT be a quick in and out, they should spend some time with you asking you questions about your symptoms and family history. I think someone mentioned making a list of your symptoms, that is what I did. Include the symptom in detail, when it started and if anything makes it better or worse. Also take copies of any labs you've had done over the last year or so. The rheumy should also examine your joints, skin, hair, lymph nodes, etc my first rheumy appt was about 1 1/2 hour long.

I know how you feel about taking meds, I was the same way. I had never been sick and only took one pill a day which was my thyroid med but I found as time went on I needed the meds I am on, not only to help the problem whether it be pain, GI probs, etc but to help me function on a day to day basis. At this time I work 5 days / 35 hours a week. Here lately I have been crashing more often, usually after work and on the weekends. I don't like feeling this way but do what I can to take care of myself so I can continue to work as long as possible, as I am only 37.

You will learn that stress is bad for you and during stressful times you may have a flare. Also you will learn to listen to your body and rest when needed and limit your physical activity such as running errands, shopping, etc. This is the one thing I struggled with the most, luckily my hubby really stepped up and starting helping me.

I know I am scattered, please ask more questions if you have them. Take care and let us know how the rheumy appt goes.
Posted 7/20/2009 3:10 AM (GMT 0)
Thanks jhmom. I am also just thirty four and work five days a week at forty hours a week or more sometimes. I am the manager at the National Guard base here in Arkansas. I am on salary and have sick and vacation time built up also. Getting up and getting to work sometimes is a huge struggle. I want to be able to work as long as I can also so I need to take naps. I have tried naps in the past and wasn't good with them but now I'm getting better. At first taking a nap made my mood awful. When I woke up I felt depressed that I had slept and I thought about it and really anaylaized my feelings of why.. I think i felt guilty for not using my time for getting things done. But now realize that my nap is time well spent towards my health. I am excited to see the rhemy because I have put most of my faith into that appointment. It makes me feel like I may actually get some information for once. LOL.. I will be posting here alot and reading other posts. Thanks for the reply and I hope you feel better soon!!
Posted 7/20/2009 11:23 PM (GMT 0)
Smarty Pants...
Hi, I'm in Arkansas too... Russellville...
I'm sorry this is happening to you and you are so young.. I wish you all the best....
I think you should go and see Dr. Abraham at the Diag. Clinic in LR... I saw him for almost two years... then we moved to Oklahoma for one year and I go all the way to Tulsa to see my Rhemy.....
Posted 7/21/2009 2:31 AM (GMT 0)
It's cool that your from Arkansas also!!! I live in White Hall. It's between Little Rock and Pine Bluff. My general dr. is in White Hall. I really like him alot. He has been great listening and paying attention to everything I say. He takes it seriously and doesn't act like I'm overreacting or anything. He isn't on the hospital staff though. He was but isn't now. So I was to be hospitalized he wouldn't be able to care for me. That's one reason he wants me to see his friend, rhemy, first. This way if i was hospitalized they could work together and he could have some say so in my medical treatments through him during any hospital stays. I may have to change at some point but I would like to give this guy a chance first. I just worry about language because he was from India. I have problems understanding sometimes but hopefully he speaks pretty clear. LOL...

Thanks for your concern. I hope you have really good days ahead of you also.

Posted 7/21/2009 2:58 AM (GMT 0)
My doctor is from India but speaks better English than I do. I had a similar worry until I realized I was being silly as many other counties teach English from Kindergarten on.
Posted 7/21/2009 3:28 AM (GMT 0)
Yes they do! I sound like a hill billy compared to some LOL.. I have a hard time understanding accents by phone but in person i think i will be better at it!!

I need to buy a new thermometer. I have felt like I had a low grade fever since last night and I have a achy head also. Maybe I have a bit of fever. It's been forever since I have used one that I can't remember what I have done with it. I looked through all my junk drawers LOL..

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