View Full Version : New and not even sure I should be here...
05-22-2008, 02:47 PM
Hello board. I'm Dharma. I'm not even sure I should be here, but I'll post anyway.
I've had issues for nearly a decade. My GP sent me to a rheumatologist a few years ago because he suspected auto-immune disorder of some sort. I was diagnosed with fibromyalgia.
I completely dismissed that diagnosis, because while I have many of the fibro symptoms, I have zero tender points. It also seemed like the rheum just threw that diagnosis at me to appease me. I did see my GP after that and told him my thoughts. He was understanding, but didn't really offer anything useful. Then we moved and I haven't found a new rheumatologist to follow up with.
Things have flared up big time recently, the main thing that makes me think not fibro but lupus is the fact that I have light rashes and they worsen after sun exposure.
The thing that makes me think not lupus is the lack of weight loss. In fact, I've gained weight, although that could be partially due to continually decreased activity because of pain, energy, etc.
I know you all have a lot of experience with lupus. In your opinions, do you think my weight gain is a pretty big clue that it's not lupus?
My general symptoms are joint pain, sciatic pain, headaches, light rashes on my neck/upper chest, shoulders and arms that are sensitive to sunlight, have had two miscarriages, burning soles of feet and palms of hands, neck pain that is gradually worsening over time, slightly swollen eye lids, intermittent sleep issues.
I know I should see a doctor. I have a hard time establishing relationships with doctors. I also get really annoyed and frustrated when I pay $$$$ for test after test and the docs tell me they don't know what's wrong.
I'm also really frustrated at how unsympathetic people around me can be. My mother doesn't get why I haven't gotten another job. I can barely walk to the car some days. She thinks I just need to get some more exercise. My husband vacillates from thinking I'm just out of shape to thinking I'm serious. My sisters completely dismiss me. It all makes me just doubt myself and the fact my problems and issues could be real.
I planned on making a short intro post. I guess I had more on my mind than I thought. :oops: Thanks for reading, if you made it this far.
05-22-2008, 04:20 PM
I just wanted to welcome you to the forum. I am sorry for your suffering and frustration. Lupus can be very difficult to diagnose. If you spend some time reading the posts of others on the forum, you will find that it often takes years to get a diagnosis. Sometimes, the presenting symptoms can be vague and generalized.
It is important that you find a skilled physician that you trust, and that you focus on getting some answers for yourself. If you do indeed have lupus, it is very important that you obtain quality medical care to monitor your health, even if your lupus is a mild case. Knowledge is power. Lack of knowledge can be very frustrating and depressing.
Hang in there and take charge of your health care situation. I hope that you will find yourself feeling better very soon.
05-22-2008, 04:23 PM
:D Welcome Dharma
I'm glad you found us.
I'm not diagnosed either and they let me hang around :)
This is a wonderful site with warm friendly and informative people. It can take quite awhile to get a diagnosis.
Each person can display symptoms differently. Weight gain/weight loss. There's nothing written in stone. Pluse some of the medication they use for treating lupus cause weight gain.
Feel free to ask questions and look around at the posts of the other members.
I'm sure the others will be along shortly to welcome you :)
05-22-2008, 06:46 PM
First, don't doubt yourself, or deny your pain and especially don't let a doctor either...
Second..welcoming you with open arms....
I know it is difficult finding doctors when relocating..and who do you ask for a referral to, the mailman...it could be a start. I moved two plus years ago and I am still searching. Life, a vast difference from the Pacific Northwest to the southeast...I know frustration.
Sometimes when people don't see a broken leg, a stitch or a bandage you don't get sympathy. Being fatigue...with an autoimmune disease...can be seen as lazy. Here, we know we are not, we have a disease...
You only have so much in the bank each day, bounce a check and your in bed earning a deposit for three days to enjoy another day later in the week. So pace yourself..
Worry not what others think, the fatigue from an autoimmune disease differs sooooooo much from just being tired from work or from a workout. I've did all three and IT, Lupus is the hardest.. no comparison.
Then you toss in weight gain, weight lose, headaches, rashes..pain...insomnia...sheesh. Don't waste another thought on what others think, don't waste your precious energy on trying to convince them either.
If you find a primary provider...he/she should be able to refer you to a Rheumatologist. Hey one of us might be in your area to give you a referral...I am in the Charleston, SC area...
Do you have any medical records with you, lab result from the years. If not, request them to be sent to your primary when you find one...
To help you.. till you find a doctor...
Rest, pace yourself...do a little, rest a lot, do a bit more rest up some more...Make a list for the day of do's then cut it in half...
Shower everyday...make a plan, small or medium so you can feel productive in the day. A load of clothes. Helps keep depression at bay when we feel we contribute instead of thinking too hard on what we are...what we had, what was. We learn to change, adapt and change up again...
Adapt your lifestyle to your pain and fatigue...
Try yoga, pilates or walk to keep yourself moving, metabolism moving..
Eat fresh, no junk...nothing in a colorful wrapper or in a bag from a drive up. No sugar, no aspartame....
Keep salt light...
Eat fish..over red meat..eat chicken over red meat. Eat and drink for your health...
No smoking..limit alcohol...
Just the usually stuff we all should be doing.
Use sunscreen SPF 50 or more..limit time outside after 4PM, or keep cover...
and most of all love yourself...
Do find a doctor...the early you are diagnosed, the earlier your symptoms can be treated the better. Better for your spirit, mind and your health. So, let your fingers do the walking through the Yellow Pages..
Keep looking for your wellness..
05-23-2008, 10:18 AM
First of all, welcome to our wee family here!
Secondly, I was diagnosed with 'probable' SLE in March of this year having had issues which had gotten worse for two years before that. I was at the point where I was using a walking stick.
Between the months of August and December of last year, I managed to put on enough weight to take me up two sizes in clothes.. I feel like the size of a bus most days, its horrible. Even to the point where my son's teacher asked me when my baby was due ~blinks~
So, no, weight gain doesn't mean its not lupus!
I'm on medication now which has helped so much I can't believe the difference. Fight for your right to less pain and good health, we'll all be rooting for you here and always here when you need someone to rant at or a shoulder to cry on!
Let us know how you get on!
05-23-2008, 10:34 AM
Thank you all so much for your support and advice. You have given me lots to think about.
05-23-2008, 10:44 AM
We're glad we can help and you're welcome, Dharma
And know, just because you don't have a diagnose doesn't mean you are not welcomed here. Many are in the limbo phase. So, you are in the right place.
So ask, seek support and share...
Be good to yourself...
05-23-2008, 11:24 AM
I would like to welcome you as well. You have recieved some excellent advice. You can join me and sits in doing the limbo.
While my GP suspects lupus he is refusing to treat me for IT because of the dangers involved in the treatment. Instead he's choosing to treat me for Fibro and any symptoms that arise rather than treat the cause. I have requested to be sent to a dignostic clinic 2 hours away that is run by 4 Rheumys. I called 2 days ago and have not heard back. Like you, I don't trust doctors. They've dropped the ball on me my whole life. If I don't hear back soon, I'm going to see another doctor that sees my kids. He has a horrible bedside manner, but doesn't hesitate to treat someone aggressivly that he thinks has anything wrong with them. It just boggles the mind that I have a doctor that believes I not only have IT, but have an overlap and is refusing to treat me.
Sorry didn't mean to rant a bit there, but it just goes to show that even if you manage to find a doctor that believes you have IT, that doesn't mean you'll get the care you need. Oh and I also have had weight gain rather than loss. Some sights say any fluctuation in weight not just weight loss.
I can't stand the looks either. Alot of days my legs won't support me very well and I really should use the ride in buggies at the store, but I won't because of the looks. There is a T-shirt on cure4lupus site. I'm tempted to get it just for those times. It says "I've got lupus, what's your excuse".
05-23-2008, 11:49 AM
All these wonderful people have given great advice, I don't have much to add. I just wanted to welcome you!
Take it one day at a time.
Welcome. There are quite a few people here who are still un-diagnosed. Your frustration, and pain are unfortunately common themes shared by many people here. I was diagnosed with SLE in 2004. In a way, I feel lucky because I finally had an answer, and a reason for all the strange and seemingly unrelated symptoms I was having. Many others are still stuck in limbo though. I hope you can find a decent rheumotologist. Good ones are rare. People here are very understanding, and very inclusive as well. Once again, welcome.
05-23-2008, 06:39 PM
I am rather late in welcoming you, but I see that some of our members have already welcomed you and have done an excellent job of answering your questions, giving you good advice, and offering you support.
As was mentioned, Lupus is indeed a very difficult disease to diagnose and the process can take up to a year sometimes. Also, the disease affects each of us differently; some of us lose weight and some of us gain weight. So, the weight issue is not enough to rule out (or to rule in) the possibility of Lupus.
In order to diagnose Lupus, there are between 11-14 criteria that doctors use (depending upon how the doctor/lab/hospital breaks them up). Of those 11-14 criteria, a person has to meet at least four of them before a diagnosis will be made. The four symptoms do not all have to occur at the same time. Diagnosis is usually made by a careful review of a your entire medical history coupled with an analysis of the results obtained in some routine laboratory tests and some specialized tests related to immune status. Currently, there is no single laboratory test that can determine whether a person has lupus or not.
Here are the eleven criteria:
Malar Rash Rash over the cheeks
Discoid Rash Red raised patches
Photosensitivity Reaction to sunlight, resulting in the development of or increase in skin rash
Oral Ulcers Ulcers in the nose or mouth, some can be painless, often they are painful
Arthritis Nonerosive arthritis involving two or more peripheral joints (arthritis in which the bones around the joints do not become destroyed)
Serositis Pleuritis or pericarditis (inflammation of the lining of the lung or heart)
Renal Disorder Excessive protein in the urine (greater than 0.5 gm/day or 3+ on test sticks) and/or cellular casts (abnormal elements the urine, derived from red and/or white cells and/or kidney tubule cells)
Neurologic Disorder Seizures (convulsions) and/or psychosis in the absence of drugs or metabolic disturbances which are known to cause such effects
Hematologic Disorder Hemolytic anemia or leukopenia (white blood count below 4,000 cells per cubic millimeter) or lymphopenia (less than 1,500 lymphocytes per cubic millimeter) or thrombocytopenia (less than 100,000 platelets per cubic millimeter). The leukopenia and lymphopenia must be detected on two or more occasions. The thrombocytopenia must be detected in the absence of drugs known to induce it.
Antinuclear Antibody Positive test for antinuclear antibodies (ANA) in the absence of drugs known to induce it.
Immunologic Disorder Positive anti-double stranded anti-DNA test, positive anti-Sm test, positive antiphospholipid antibody such as anticardiolipin, or false positive syphilis test (VDRL).
I hope that this information is helpful to you. I also agree that it is very important that you learn as much as you can about auto-immune disorders. Having knowledge will help to alleviate some of your fears and frustrations. It is also important that your loved-ones become knowledgeable so that they can understand what you are going through (especially with reference to the debilitating fatigue!). Also, as Oluwa suggested, start to take very good care of your self now, so that you can avoid worsening of symptoms - regardless of which auto-immune disorder you may have. I wish you the very best.
Peace and Blessings