Not sure what's going on...(sorry this is long)
I'm a 35 year old female. I have never been here before, and I have not been diagnosed with Lupus, however my older sister has it and I have often wondered if I may also.
My husband is active duty Army, so much like one of your members who I read is in the Air Force, it seems I never have the same doctor twice in order to really be able to narrow down all the medical mysteries that I've experienced.
I've been tested about three times, by three different doctors. Each time nothing comes up pointing at Lupus. But each time I tell them the things that I'm experiencing, they seem to think enough of it to test me.
I've had bouts with major fatigue, muscle aches and joint pain, and some very bizarre itching on my legs after I dry off from a shower or bath. I have never had sensitivity to the sun however, and I can't say I've experienced any rashes either. I do get weird crusty spots on my scalp (which I've often wondered if maybe it's just dry scalp) and small hard bumps that eventually go away.
But for me it's the fatigue that's the hardest part to deal with, which comes out of no where and lasts sometimes 2-3 weeks. It's sort of like when you have the flu and your miserable, achy and tired.
So, I'm not sure what's going on, but sometimes I wonder if I've been misdiagnosed, or if it's nothing. My sister worries, thinking all the time that I have Lupus. I just wish I could get someone to really pay attention to what is going on, instead of just waving it off like I'm nuts or something.
Thanks for listening!
It must be hard, not having a consistent doctor to go to. That does put challenges on treatment.
Have you done a diary of your symptoms, so taht your doctor can see what happens at what times? List things like the weather, foods, stressors, and so on. There are so many things that have similar symptoms - many forms of arthritis have fatigue associated - lupus, chronic fatigue syndrome, RA, and who knows how many others. Discuss the fatigue, how you feel - what effect it has on you and your daily activities - so that the doc can clearly understand what YOU mean by fatigue.
Take a list of questions with you to the doc - so that you're sure you get answers and don't forget any.
Have you tried a shampoo and/or conditioner with tea tree oil? That might help the crusty spots on your scalp, at the very least, it shouldn't hurt! Itchy legs - does cream help?
Lupus and many other related conditions can be devilishly difficult to diagnose. For some, the clinical and lab pointers SCREAM the diagnosis, for many of us, they give a confused whisper.
In any case, we welcome you to this community, and hope to hear from you often!
Thanks for the words of wisdom hatlady
No, I have not kept a diary...for some reason it never occurred to me to do that. Good idea though!
I am however, going to talk to my PCM (for non-Army people this is Primary Care Manager) about a referral to a rheumatologist. I keep seeing people on this website, as well as my sister mentioning it, who all say that's the best type of doctor to see for Lupus. I'm not saying that I have it, I just want someone to say that I DON'T have it, without a doubt.
And I'd like to know, if possible, what is causing me to feel this way soon so that I'll know how to deal with it. My hubby is being deployed to Kuwait (his second time during this war) in October and I would feel so much better if I knew so that HOPEFULLY it's one less thing on my mind during that time.
Thanks again for listening everyone...at least I know that here I can talk and no one will think I'm nuts!
This is one place you will not be labeled as "NUTS!"
Finding a rheumy is a great idea - if your condition is lupus, you may be able to learn that. If it is some other rheumatoid or related condition, you'll also be able to find that out. A good rheumy will be able to offer you ideas and information. And answer that list of questions you'll develop before you go.
The diary is such a help - you can start to see patterns, figure out if certain foods bother you, see if the weather affects you. (sigh...yes,I know most docs will say the weather doesn't matter. But every dang person I've met with lupus or any other arthritic/rheumatoid condition will say... emphatically... WEATHER MATTERS!
Keeping up with everything while your husband's deployed has to be difficult. My thoughts wil be with you!
Glad you found this site, and hope you'll stay in touch here.
Hi Erin, I just thought I'd mention that since you don't always see the same dr. each time, it might help if you keep copies of all the tests as they are run by each dr. and bring them along with you. This way they won't all start from scratch. (I'm not sure if you mean you see different docs - but at the same facitlity, or at completely different locations.) Obviously, if they're at the same facility and CAN refer to previous tests, then ignore this - LOL! I hope you get some answers soon for your peace of mind. Having a husband who is serving must be extremely stressful, and stress in an enemy of lupies. Welcome! I am new here, too!
I feel your pain. I do not have a difinitive diagnosis either, but have many symptoms, maybe related or not, it is hard to say. I is worth checking into with your family history. I worry that my 12 year old daughter has lupus, for she has many symtoms as well. It is hard not knowing where to turn. I hope you get some answers to your questions, and I would seek out a doctor.
Sorry I haven't been around for a while been unwell and had a break at the sea so trying to catch up now. I understand the need for a "label" I feel it helps with acceptance. I am sero negative--that is have no antibodies in my blood. I struggled to be taken seriously until I discovered a Lupus clinic in London headed by Dr Graham Hughes(the Uk's leading lupus specialist. he only took 20 minutes to diagnose me--now I am still question in my home town but know that Dr Hughes knows his stuff. I am lucky I have a good GP.
Be persistent, keep notes, take photos of every rash etc.my photosensitive rash helped with diagnosis and it will never be there the day you go to the hospital.