Hey all, Im 29, female and new here. Im FINALLY gonna have health insurance in less than 2 weeks, and Ill finally be able to figure out whats wrong with me, atleast I hope so. But until then, any opinions are welcome!
About a year ago, my PCP told me I have fibromyalgia. He wouldnt really do any blood work, because I didnt have health insurance and he didnt want to put me in the poor house. He said from what they did do, he doesnt think hes lupus, RA, or thyroid. But Im not sure, my aunt and co worker both have lupus, and told me u dont always have a positive if u have lupus, sometimes its only when u have a flare. Im not sure what is wrong, but Im going to list some of my problems, hoping someone will say "that sounds like me"
*Bowel probs, diarrhea/constipation
*skin bumps (lil raised bumps almost pimple like) when the sun hits my arm
*rash on my neck (right side) comes and goes once every month-every other month
*SEVERE pain and stiffness in the mornings. I have a lot of trouble walking, bending over, or sitting. My feet, ankles, knees, legs, hips and lower back are always killing me and stiff.
*tingling in my hands
*Exhausted but trouble sleeping, or falling asleep.
Welcome to the group! I'm very glad to hear that you're going to be getting health insurance, it's so important to have especially when you're having so many symptoms. I can identify with many of your symptoms as I'm sure many others with lupus can also. I have horrible hair thinning and hair loss, occasional insomnia though I'm exhausted, joint pain, rashes, and I too have had bowel problems though my rheummy believes it is due to the recent onset of celiac disease. The only problem with lupus is that it is known for mimicking many other diseases. The best advice that I could give you is to be very persistent with your doctor and make sure you feel that you're getting the answers you're seeking. A diagnosis never happens overnight so patience is always a virtue. I hope you start to feel better and get some answers soon. Feel free to post away, everyone here is very supportive. I hope to hear from you again soon, keep us all updated.
Hi & welcome. Yes, I can truthfully say, THAT SOUNDS LIKE ME. I'm luckier now; I've done much better for some years now than I did prior. 'Twas awful.
You raise a good point about bloodwork. It's true that certain autoantibodies rise with flares, then recede; but the "rules" may vary somewhat, meaning some may stay more static, some may vary widely. I think it depends on which subtance your immune system has "decided" to manufacture that it ought NOT be manufacturing. In lupus, there are a quite a number of possibilities of such unwanted things. But only a handful a few are considered "specific" enough to be included in the standard diagnostic criteria. FYI, the criteria are listed in the "sticky post" (permanent info post) at the top of thread list.
There are excellent hardcover authors who cover lupus & its close cousins in greater detail than you can find elsewhere. Look for Dr. Daniel Wallace, or for Dr. Robert Lahita. Better yet, both! Most libraries have one or both.
I hope your insurance attaches quickly. Post more whn you can, OK? Warm wishes, Vee
Thanks for replying. Its always nice to get a reply, makes me feel like people actually care. I know that a lot of autoimmune disorders are similar with a lot of the same symptoms. I just dont know what to do because my last dr said fibro, gave me 20 vicodin, told me Id be in pain for the rest of my life and no refills and sent me on my way. lol. Its really hard for me to do my job, because Im constantly lifting, pulling, pushing, squatting and bending at my job. But hopefully when I do find out whats really wrong, they can medicate me and my job wont seem as rough. Thanks again! I will def keep yall posted after my dr visit sometime in May.
hi there ... really glad that you are getting your medical insurance ... will go a long way to helping you get what you need ... doing tests and getting a proper dx
not long to go
dont let a doctor dismiss you like that ... find a new one ... sometimes takes time to find the right one ... feel comfortable with them, be able to discuss things, take time to explain things and involve your support (my husband plays a major part in monitoring my sle)
basically someone that speaks to you and that you can speak to ...
do your own research and don't be scared to voice your opinion ...
PS it is never a question of will there be pain today but the question is how much of my body aches and what class ache is it (1-5) ... bring on the meds