I have more than one autoimmune disease and more than one chronic health condition. When I feel unusually ill (I am always tired and achy), I have to decide which physician to see. Do I see my primary care physician, do I assume that the lupus is the problem and see my rheumatologist, or do I try to see my endocrinologist first? Am I the only one with multiple diagnoses who or who sometimes has difficulty deciding if the symptoms are from lupus or something else?
I have been dx with CLE and sjogrens, because they are so simular its hard for me to know which one is acting up. No you are not alone.
Just my rhuemy so far. Im going to see him in a few weeks and ask him who he suggests I see for the skin stuff.
So far, since July, I have been to an Orthopedic, Pain Management doc, my PCP, a Rheumatologist, a Neuro-surgeon, and I'm getting an appointment with a Neurologist. My husband doesn't understand any of this and gets upset with all the doctors I have to see. I try and try to explain it to him but he never seems to "get it". I am in so much pain and now I am having myoclonic seizures. It's not fun to jerk violently when your joints and muscles ache. I guess the best advice I can give is to call and talk to your nurse at your PCP. They sometimes know more than the doctors do and are more helpful when you are not sure about something. I know my nurses by first name and they know me. They can be your best ally too.
Good Luck, hope you get the right help soon.
TTFN, Jen :)
I have decided to pretty much lay everything at the door of the Lupus. It really covers a lot of things. I had to go to the hospital a few months ago because of hemorrhaging in my left eye. (I had to stop going because I got the bills for the first few visits!) They looked and looked at what could have caused the hemorrhage, and didn’t find anything. Then I told the specialists that I had Lupus, and one of them took that very seriously. Sooo… Like I said, I think everything boils down to the Lupus. That is what Lupus does-tears up your entire body, very gradually. We just have to try to keep a decent outlook and sort of stay above the fray.
@ Fairykissez, I have SLE and Sjoren's as well.
Do you feel extremely fatigued at times, almost like you can't move? When I feel this way, I blame the sjoren's, it must be attacking my muscles and joints. What do you do to alleviate this problem?
Fairykissez said:
I have been dx with CLE and sjogrens, because they are so simular its hard for me to know which one is acting up. No you are not alone.
Oh gosh yes I do, can barely walk when Im that fatigued. I dont know which is causing it as both lupus and sjogrens causes fatigue. I want to say that the sjogrens is more active because my dr says my lupus is very mild, who really knows what is what. Im still learning about all if this. My dx came about 9 weeks ago and only really been learning about it for the past couple of weeks. I guess denial and didnt want to hear about all the scary stuff that could happen to me is why I didnt. From what I am understanding lupus and sjogrens are so closely related “kissing cousins” that its hard to tell one from another. Did you have the biopsy done for sjogrens? My dr said I didnt need to because I was SSA positive.
I am allergic to the Nightshades, among other things, (like shellfish, sugar, etc) and I stayed completely away from them for years. Now, since so many foods have them in them, I allow myself to eat a bit here and there. So far, no really bad reactions, not that I can tell anyway. I might be getting reactions, and just don’t notice, because most of the time I have one thing or another dragging me down.
I can't say that I know anything about Sjogrens disease. What are the symptoms, as you know and experience them?
On the other hand, I can write a book about Lupus symptoms. <g> And, I doubt I know even the 1/2 of what they are. It seems I learn more about it every week.
Fairykissez said:
Oh gosh yes I do, can barely walk when Im that fatigued. I dont know which is causing it as both lupus and sjogrens causes fatigue. I want to say that the sjogrens is more active because my dr says my lupus is very mild, who really knows what is what. Im still learning about all if this. My dx came about 9 weeks ago and only really been learning about it for the past couple of weeks. I guess denial and didnt want to hear about all the scary stuff that could happen to me is why I didnt. From what I am understanding lupus and sjogrens are so closely related "kissing cousins" that its hard to tell one from another. Did you have the biopsy done for sjogrens? My dr said I didnt need to because I was SSA positive.
Sjogrens syndrome is an autoimmune disease that attacks moisture producing glands In the body. At first drs thought that it just causes dry mouth and eyes but its much more than that. It can cause joint pain, digestive issues, rot the teeth, fatigue, brain fog, skin rashes, eye problems (besides just dryness) headaches, sinus problems, recurrent upper resp infections, central nervous system issues such as numbness and tingling. Sounds a lot like lupus so thats why its hard for me to tell which is which. My mom was dx 30 years ago and she was told it was only dry mouth and eyes so she never got treatment and is now a very sick person. She also has lupus and hositmotos which occurs very often in those who have sjogrens.
Oh, then I have sjogrens, too. Dryness everywhere.That may be why I had the eye hemorrhage a few months ago, with almost constant pressure, itching, etc in my left eye. I also had a carotid dissection which contributed to problems in that eye.
Now, what is the hositmotos?
I wouldn’t be at all surprised to learn I have one of these thyroid gland diseases, either, then. I sometimes wake up with my heart just racing; I have had pericardial symptoms in the past; my blood pressure raged the time when I had the carotid dissection, obviously; I get very very hot sometimes, an well as really cold; as well as lupus Nephritis showing up a couple of years ago. (are we having fun yet? - sorry, I have to make jokes about this, or I feel like crying.)
Keep in mind it will probably be many months, if not years before you can see a real difference without eating them. At least, it took that long with me.
Ann A. said:
I love nightshade vegetables - potatoes and tomatoes - just to name a few. But after my back surgery I will be trying a nightshade elimination to see if they are responsible for any of my symptoms.
RJQ said:
I am allergic to the Nightshades, among other things, (like shellfish, sugar, etc) and I stayed completely away from them for years. Now, since so many foods have them in them, I allow myself to eat a bit here and there. So far, no really bad reactions, not that I can tell anyway. I might be getting reactions, and just don't notice, because most of the time I have one thing or another dragging me down.
Good you can keep laughing. I try to laugh as much as possible, too. Thanks for the info. I will see if my rheumatologist can test me for this, as they symptoms are very familiar to me. Um, what happens when your Thyroid burns out? (if I even really want to know? lol!)
Ann A. said:
Of course we are having fun! We have autoimmune diseases. The one called Hashimoto's slows you down and makes your cold, then speeds you up and makes you hot - heart palpitations - until your thyroid is completely burned out. I have a joke about missing my thyroid meds - Day one no difference, Day two tired but functioning, Day three too tired to get off of the couch and just starting to understand that this is about a lack of thyroid hormones, Day four too tired to reach for the bottle of thyroid meds even if they are on the table in front of you. Good luck. And I am usually laughing.
Wow, thanks! Gives me more info about this. I will take my notes to my rheumatologist next time I go there. I might even call in my question in advance, since I might forget to bring or even read my notes…
Ann A. said:
hypothyroidism simplified
http://www.endocrineweb.com/conditions/thyroid/hypothyroidism-too-l...
Hyperthyrodism simplified
http://www.endocrineweb.com/conditions/hyperthyroidism/hyperthyroid...
Do you think that the food allergies might turn on the Lupus flares? There are just so many questions surrounding this disease! Heck, maybe the Lupus flares cause the allergies to flash up more. Stupid lupus.
Ann A. said:
But I need to add the allergies and food sensitivities. There are so many foods that make me feel ill that a complete list would take forever. But what Janice call "moo juice" and my grandchildren call "the mammary secretions of bovine animals" is an important culprit in making feel terrible and so is gluten. I love pizza - I mean love it. And I adore ice cream. Yesterday one of the neighborhood kids had a birthday party. Against my better judgement i ate a slice of pizza and a small dish of ice cream. Today, I can only crawl out of the bed to make it to the bathroom. I hurt, my brain is fogged, and I feel stupid. I know better but every now and then I have to learn over again that some of the symptoms of my food intolerances are just the same as those of a lupus flare.