View Full Version : new from BC Canada
05-12-2009, 09:11 AM
Hi all. I have not been diagnosed with Lupus, but my Dr. brought it up yesterday and I have started researching it. I got bloodwork done yesterday to rule out rheumatoid arthritis, thyroid and iron deficiency. Doctor does not think its iron deficiancy, but is checking anyway.
What prompted me to go to the doctors is that I am suffering EXTREME fatigue. It gets worse on a daily basis. I get home from work and just want to sleep. I have 3-4 hour naps on Saturday and Sunday. Beginning of spring I would get home from work and ride my horse, its my passion and I like to do it on a daily basis. Last week I did not ride ONCE, I was too tired. I didnt ride until the weekend, and was able to nap afterwards.
I am getting so depressed. I wake up yawning, can function until around noon, then just fade throughout the rest of the day. That is my MAIN symptom. I also had a random nose bleed a few weeks ago and I never get them. My finger joints periodically hurt in the cold or before rain, and my one finger has been super sore for the last two weeks and has even developed a bit of a bump on the joint. I had a random rash on my ear that was dry and flakey a few weeks ago, but I thought maybe it was just ezcema.
I have suffered migraines for the last few years, but recently they have intensified to where I just want to put a bullet in my head to make them go away. I seem to come down with a migraine on sunday's for some reason. They used to only come with my mentrual cycle, but lately it seems as if they are coming more frequent. When I was 25 ( I turned 39 yesterday), I started having anxiety attacks. Then I had to have a few surgury's for endometriosis (nothing to do with lupus, but thought I would include that tidbit.)
All in all, I am generally a happy, easy going but hyper person. This fatigue has been going on for a month and I am getting so frustrated as its taking away from my one passion. This is not the first time either. I have had bouts of fatigue throughout the years and been to the Dr.s before. They always say its because of the anti depressants I am on to control my anxiety. its ONLY 50mg zoloft a day, a very low dose.
Just needed to vent. I am so frustrated with always being tired and fighting with myself to keep my eyes open. I can deal with joint pain and stiffness, and anything else, but NOT this feeling of needing sleep. To top it off, I get 8-9 hours a night. :grumpy: Sorry, had to vent for my very first post. Do my symptoms sound like lupus to you all?
05-12-2009, 09:56 AM
first, let me welcome you to our family of the sky.....you will meet many compassionate and knowledgeable people here, and we will be your friends from around the world.
i am glad your dr. is taking such a proactive approach to testing you. Yes, fatigue, joint pain, nose bleeds, cold fingers, even endometriosis are all symptoms that mingle among us. So, sounds like your dr. is really checking out all possibilities.
You say you get tired by middle of work day.....do you work under fluorscent lighting, or are you in the sun a lot? This is a little check that you can do yourself: If the answer was yes to either situation, try really protecting yourself from these UV rays. Wear clothing that covers the body, wear hats, and put on sun block (not sunscreen). UV rays are a definite trigger for lupus flares....especially fatigue.
Also, start a list of symptoms. Try to think back in your past, because lupus symptoms are intermittent, they come and go, and they change locations all of the time. read some of the different threads here, educate yourself on different symptoms that people deal with, and think back to see if you have ever experienced any similar symptoms. Write it all down, make a copy, and take with you to dr.....this will really help with the diagnosis process.
The nose bleed could be caused by sores or a dry nose, and this is a symptom of Sjorgen's Disease, which often runs concurrent with lupus.
Hopefully the fatigue will subside somewhat if you protect yourself from the UV rays. The fatigue is possibly the most difficult symptom that we deal with, because it leads to depression, which leads to stress, which leads to pain, which leads back to fatigue (and the cycle goes on). We each have to find our own ways to get off of this ride whenever possible and enjoy a life for a while until the next time that the roller coaster starts again.
The great thing, is that it is possible to go into remission, some of our members have been in remission for many years. Also, there are some treatment options that give some relief. I found the options themselves very frightening, but this is where this group really shines. We help each other address the pros and cons of different options, and we stand by each other as we face our fears.
again, welcome to our group, make yourself at home, jump in on some threads, ask questions, and in the end, we all learn from each other.
05-12-2009, 10:03 AM
Thank you for your reply! I just was reading through the forum and saw that night sweats are also a symtom.. OMG I suffer from those bad. I thought maybe it was peri menopause, but at 39 Im still fairly young for that arent I? Night sweats started a few years ago....
eta: I CANT HANDLE THIS... its only 10:30 in the morning. Been at work for only 2.5hours and I can barely keep my eyes open. I am so tired!!!!
05-12-2009, 11:03 AM
Hello and welcome. I felt i was reading a post i had written.Everything in yours is what i suffer with daily.Except....i have sever insomnia usually,but due to meds im on at the moment am finding it hard to stay awake. I see my rhemi tomorrow who once said i have Lupus.....to then say i had chronic fatigue syndrome (M.E).I'll let you know what he says tmrw.
Glad you found us here and you keep venting....will help you and we will help you through it.
05-12-2009, 12:43 PM
okay, I am preparing a list of ailments and symptoms throughout my life to show doctor. Will add more as they come to me. Does this look like lupus to anyone???
List of symptoms and ailments
. painful right knee throughout childhood and adulthood. Comes and goes, when I was about 10 it was so painful I couldn’t walk. Went to E.R, was told it was growing pains. During pregnancy I was told it was “sports knee”
. chronic bladder infections and yeast during teenage years
. Always have had a need for more sleep then normal
. eczema as a teenager
. anxiety attacks started at age 25
. poor circulation to feet in cold weather
. sometimes sharp chest pains (from smoking?)
. Started getting sore finger joints this winter
. bronchitis (smoking related?)
. started getting periodic leg cramps this winter
. had an episode of floaters in my eyes for a couple of days
. Have previously had bouts of fatigue and gone to doctor. Was told it was the 50mg of Zoloft causing the fatigue.
. migraines, usually at menstrual time. Was getting them more frequently when I worked under fluorescing lights directly overhead. Now, been at new job and was only getting once a month until the last month.
.EXTREME cramping during menstrual with heavy flow, getting worse every month.
. sore neck a few times (slept on it funny?)
WITHIN THE LAST MONTH:
. finger next to baby finger developed a very sore joint, and a “bump” appeared on the joint. Still stiff and sore two weeks later, some days worse pain, most days just an ache.
.Fatigue started. Within the last three weeks I have not been able to do something I enjoy, which is riding my horse when I get home from work. I start yawning at around 10.AM (after an 8 hour sleep) I have not been able to ride in almost THREE weeks. Only on weekends can I ride, before I get to tired in the afternoon, then I have a 3-4 hour nap.
. Two weeks ago I got a random nosebleed, I NEVER get nosebleeds.
eta: bouts of nausea, unexplained eczema like rash on ear and night sweats
05-12-2009, 03:48 PM
Just wanted to say hello. You are lucky to have a physician taking such a proactive approach. Hopefully, you will get some answers soon. The fatigue can be debilitating. I have awoken some days to find myself so exhausted and in such pain that I cannot even lift my arms in the shower. Thankfully, I haven't had many of those in a while! I don't know whether you have lupus - for your sake, I pray not. Many here at the forum are awaiting a diagnosis, just like you...please know that you are welcome to look here for support no matter what.
Best to you,
05-13-2009, 09:16 AM
Hello and Welcome. I am the moderator/administrator of this global family that we call WeHaveLupus. I am so glad that you are here as you will find much support, comfort and understanding. Also, everyone here will do all that we can to answer your questions and to give you information and advice.
I've read your list of symptoms and would say that you could, indeed, have Lupus, or at least some sort of auto-immune disorder. An autoimmune disorder is a condition that occurs when the immune system mistakenly attacks and destroys healthy body tissue. The problem is: There are more than 80 different types of autoimmune disorders! Each one is rather difficult to diagnose. Therefore, it can take up to a year to get a definitive diagnosis and many members here still have not gotten a solid diagnosis!
Normally the immune system's army of white blood cells helps to protect the body from harmful substances, called antigens. Examples of antigens include bacteria, viruses, toxins, cancer cells, and foreign blood or tissues from another person or species. The immune system produces antibodies that destroy these harmful substances.
But in patients with an autoimmune disorder, the immune system can't tell the difference between healthy body tissue and antigens. The result is an immune response that destroys normal body tissues. The response is a hypersensitivity reaction similar to allergies, where the immune system reacts to a substance that it normally would ignore. In allergies, the immune system reacts to an external substance that would normally be harmless. With autoimmune disorders, the immune system reacts to normal body tissues.
An autoimmune disorder can cause: The destruction of one or more types of body tissue; Abnormal growth of an organ; Changes in the way an organ functions. Also, an autoimmune disorder can adversely affect one or more organ or tissue types. Organs and tissues that are commonly affected by autoimmune disorders include: Red blood cells - Blood vessels -Connective tissues (auto-immune disorders are often also called connective tissue diseases) -Endocrine glands such as the thyroid or pancreas -Muscles -Joints -Skin.
Also, it is quite common for a person with one auto-immune disorder to develop other auto-immune disorders and suffer from them at the same time. This is commonly known as overlapping and/or co-existing disorders. Some of the most frequently seen overlapping auto-immune disorders are:
Type I diabetes
Systemic lupus erythematosus
Discoidal Lupus erythematosus
Celiac disease - sprue
As you can see from the above, testing to determine which auto-immune disorder a person suffers from can be lengthy and complicated. Especially given the fact that many of the symptoms overlap (many of these disorders have the same symptoms)! The goals of treatment are to reduce symptoms and control the autoimmune process while maintaining the body's ability to fight disease. Treatments vary widely, as can be expected, and the types of treatment will depend on the specific disease and your specific symptoms.
We are here to help you as you and your doctors navigate through this process. It is good that you have a doctor who believes you and who is working diligently to find answers for you. Please know that you are not alone and we will be here for you for as long as you need!
Welcome to our Family
Peace and Blessings
05-13-2009, 09:33 AM
Thank you for your welcome and reply! I called the dr. yesterday to find out if she did request a test for ANA and apparently she did. So now its just a waiting game.
I got 9 hours of sleep last night and on my drive to work (approx a 25 min drive) i counted my yawns.... NINETEEN times. That is the MOST frustrating thing, is the fatigue keeping me from the things I love. I am normally a hyperactive type person so this is killing me!
My uncle has Gout, another autoimmune disease I believe, but other then that, the family is fairly healthy, I am so hoping I am just needed some sort of vitamin shot!
ETA: just wanted to add, I lose ALOT of hair in the shower and in my brush.. mind you, I have VERY thick hair, so its not obvious hair loss to look at me, but MAN, i get clumps coming out when I brush!
05-13-2009, 10:13 AM
Hello Grullagirl :wavey:
Just wanted to welcome you. You've found a place where venting is always allowed...and you never have to apologize...even if you start your first post that way. :yes:
I think quite a few of us had a good rant or 'unloading' post for our first visit here. We ALL understand better than anyone how frustrating and overwhelming this can be...especially the extreme fatigue. It's the worst! I've heard one of our members, Rob, describe it as if you have a lead blanket over you and every effort, each movement is debilitating and exhausting. It's so hard to think or move or do anything when the fatigue hits. I'm really sorry this is interfering with your passion for your horses and your love for a daily ride. It's just not fair...It hurts so much when we have our health deteriorating to the point that we must alter our passions...our lives. And added to the frustration is not knowing what's causing it.
I so hope your doctor is able to sort things out and find an answer for what's going on. You definitely have quite a few symptoms that mirror what many of us with Lupus have. I've had the red, swollen bumps near a painful finger joint many times over the years...my doctor calls them Rheumatoid nodules and says they're caused by inflammation and irritation of the joint and are definitely something Lupus can cause. They can hang on for a few days or a week and then mysteriously disappear overnight. Do they feel warm and tender, and hurt more or sting when you touch them? Sometimes mine would itch also. I would sometimes ice mine for awhile to numb the pain for short term relief. If you're able to take it, you might also try an over-the-counter NSAID, like Advil or Ibuprofen for it.
I wish there was a magic cure for the fatigue...and the depression you're having. It's so hard to keep postive and keep your spirits up when you're life is changing over night and you feel so crappy. Sending you gentle, caring HUGS to let you know you're not alone...you've found a place where there are plenty of shoulders to lean on, cry on...people who understand and care.
05-13-2009, 10:20 AM
just wanted to say a quick welcome...
05-13-2009, 06:57 PM
you mentioned hair loss, my dr. has me taking folic acid to help with this. You might want to call your dr. and ask about this.
05-15-2009, 01:28 PM
Sorry all, just thought up a couple more questions while I wait for my results.: I had the dr. look at a couple of "moles" she said not to worry about them, that they are harmless and I am almost positive she used the word "sub cutaneous" (after reading it here, it rang a bell) one on my arm, closer to my wrist, and a couple of my lower legs. They almost look more like blisters, they are raised, LOOK fluid filled, with a darker ring around them. Could that be lupus related?
Next question: I developed ANOTHER rash on my right ear. This one is SORE.. Its just a red inflamed spot on the lobe that BURNS, and weeps if I bug it.... before that I had a scaly rash that was a bit itchy. Any ideas?