View Full Version : No one will listen... new here

11-25-2006, 09:00 PM
Okay, so I was looking up my symptoms which no one is listening to online and everything I look at points to lupus.

I do have raynauds phenomenon.

I have the "butterfly rash" on and off, never have I been to the doctor when it's there though. I have tons of fatigue, I have joint pain, and weakness... Many other symptoms of lupus. I'm confused sometimes, almost disoriented like I can't concentrate or lost the information that was given to me. I also recently had these weird mouth "sores" the doctor told me they weren't sores but inflammed glands on the roof of my mouth. Sjorouns has been mentioned but none of the doctors i've been to want to look further into "just yet".

I'm at wits end, i'm to tired to do anything it's affecting my job, my schooling, my parental duties, everything. Everyone thinks i'm nuts and lazy. All I want to do is cry about all of this, and have someone make it all better.

Can anyone give me suggestions on what my next step should be? Do I just ignore my doctor and oral surgeon (the one I went to for the sores I had as I was referred to him) and schedule an appointment with a rhematiodologist (is that what they are called?)

help!!! I'm crying today as I type this, one because i'm overly emotional about this now and two because it hurts today to even type. I can't get enough sleep either it seems.

Also, I get hives every single winter for the past couple of years... First I was told it was flea bites, got rid of the animals because I had to move and still got them... Then I was told it was dry skin, finally I was dx'd with hives but no one can tell me why I get them all winter long. They are always on my torso, legs, and arms. I don't think i've ever gotten the "hives" except for that "butterfly rash" on my face. I do have allergies but the winter doesn't seem to be related to why I get hives as far as having an allergy to something. I get blisters (not seasonal relatated) that itch like crazy on my hands and around my knuckles on my fingers too, then they turn raw, dry out and go away.

I also have mvp (mitral valve prolapse) and keep getting dizzy and weird "zaps" in my head. If I think of more i'll post more... Sorry i'm all discombobulated (sp?)

11-26-2006, 08:31 AM
You have come to the right spot to find people to listen! Being a "singlemomma" can be a struggle in and of itself, without the added burden of an illness you don't understand and none of the doctors seem to take seriously. As a mommy myself, I can certainly relate to how hard it is to parent when you can barely get out of bed. It's even harder when you don't have a diagnosis and a treatment plan to give you hope that things will get better.

Lupus can cause many of the symptoms you are describing - the problem is that there are many other illnesses that can cause similar symptoms. It often takes a caring, careful doctor to put the pieces together and come up with a diagnosis. According to some studies, it takes the average lupus patient seven years and five different doctors to get a diagnosis. So you are not alone in this struggle, even though you feel that way right now.

I wish getting in to see a rheumatologist were as easy as just scheduling an appointment, but it usually isn't. Although rheumatologists are the doctors who most often treat lupus patients, they are considered sub-specialists, and rheumatology is one of the smallest subspecialty groups, meaning they are in demand. So most rheumatologists do not see patients without a referral from a primary care doctor or other specialist - meaning another doctor's office has to call and arrange the appointment for you - you can't just call and get an appointment yourself until you are an established patient. There are a few rheumies who accept patients without referral, but very few. And depending on what type of insurance you have, there may be additional restrictions on getting in to see a specialist - this just depends on your particular policy.

If there is any way to get your regular doctor to do additional tests, this may be your best option at this point. When you call to schedule an appointment, explain to the receptionist that you need some extra time to talk to the doctor, and need her help to schedule the best time for this.

When you get in to see the doctor, try to explain very calmly and clearly that the fatigue, dizziness, joint pain and other problems are having a real impact on your daily life, especially your parenting role, and you need some help. Although some people recommemd making a list of your symptoms to show the doctor, I think this often turns doctors off and makes them think you are a hypochondriac. So make the list and study it yourself so you have your thoughts well-prepared, but don't actually give it to the doctor. Many doctors are also very critical of "internet diagnosis", so it's not a good idea to mention that you have been researching any particular disease on the internet - this almost guarantees your doctor will not take you seriously. Just focus on the symptoms you are having, described as simply and factually as you can, and tell the doctor you would like a thorough physical to see what's causing the problems. If the doctor does not order any lab tests, ask him about it directly - it's been a long time since I've had any bloodwork done, and I'm really feeling rundown, etc. If you have an OB/GYN, that may be the doctor to talk to about your symptoms - they are often willing to order labwork and make referrals.

i know this is hard, but it's important not to give up - for you and your kids! So keep pushing for answers, and don't feel abandoned if they don't come right away - this has happened to many women and it is the fault of the medical system, not anything you have done or failed to do. And know there are people here to hold your hand every step of the way on this journey - You are not alone!

11-26-2006, 02:45 PM
I've been sick to a various degrees for the past 10 years and was only diagnosed with Shogren's/Sjogren's a few years ago, and then Lupus, Arthritis & Fibromyalgia this summer.

It is frustrating that it can take so long to diagnose and that a good diagnosis often is a matter of timing, e.g. going in when you are flaring so that they can see the symptoms. I know it's tough and whatever you have, be it Lupus or something else -- persistence and a thick skin is key.

I found that documenting the symptoms -- taking pix, recordings symptoms and possible triggers helps. I think the suggestion of having you GYN order some of the blood and urine tests is also excellent -- if the results are positive, it could facility better placement on the rheumatologist's schedule.....

12-01-2006, 11:05 AM
This is in reply to the single mom. I too am a single mom and was finally diagnosed with Lupus last mont. Three years ago I had a pulmonary embolism and have not felt right since. I have delt with heart trouble, migraines, skin rashes and incredible fatiuge. I too have felt crazy and lazy. In July I was diagnosed with rheumatiod arthritis and finally Lupus in October. I will tell you that being diagnosed was a huge relief because I no longer felt like I had to make excuses for my inability to do laundry, cook, clean (etc.). Luckily I have a general practitioner who listened to me as I sat in her office and cried because I could no longer do things with my children and couldn't do what I felt a mother should do. She ran every blood test possible and got me into rheumatology. If you feel like your doctor isn't listening to you get another one. As patients we need to be our own best advocates. If we knew something was wrong with our children we wouldn't let them suffer and we would find a doctor who was willing to help our children. You need to do the same for yourself. I hope you are able to find someone who will listen and help you as you look for a diagnosis. Best of luck to you!