Haven't been here in a while. Things have been crazy. Kicked my Rheumy to the curb and got a new one. Had my first visit with her a week and a half ago. She immediately diagnosed me with Fibromyalgia, after a quick physical exam. My first Rheumy never DID a physical exam! All he ever did was take blood. Beginning to think he was a vampire. He had the perfect set up...every visit cost me 4-10 vials. Anyway, new doc's office called today. My blood test results from HER tests showed an extreme vitamin D deficiency. Imagine that!?! We are told to avoid the sun, because of the Lupus and, as a result, we don't produce enough vitamin D. Go figure! So I'm finally getting some relief from the chronic pain and will soon be pumped up with vitamin D. By the way, did you all know that vitamin D deficiency contributes to obesity and makes it difficult to lose weight??? I never knew that! No wonder I can't lose weight, even when I eat only enough to survive! Anyway...is it common for all of these things to go hand-in-hand? Its been 7 months since my Lupus diagnosis, and the big Ds (disease, disorders, diagnosis) keep piling up. Is there a point at which it stops?....other than when I'm in a coffin??? LOL
You don’t know bad medical care tell you get good medical care.
Hi Jazmin,
I'm sorry to hear that the first doc you saw was a vampire but I just went for recent six month blood work and they took 8 tubes out of me and urine!
I didn't know about the vitamin D helping with weight loss so I am going to get some of that! I am recuperating from 5 days in the hospital from a significant inflammation of my lungs and now I am on oxygen 24/7. The prednisone that I am taking has so many side effects that I don't even know myself and I will be on it at least another month.
To answer your question, yes is is normal for all these things to go together and keep piling up. Don't give up, treat your symptoms and rest when you need to. I have had lupus for over 25 years and I am with the first rheumy i started with, he was just out of medical school and I trust him with my life. When I was diagnosed they told me I had about 5 years total.
Good luck and feel better,
Annie Viera
Hi Jasmin.
Glad you are finally seeing a good doc, it makes all the difference in the world. I was diagnosed in 1989, and with my husband being in the Army, I've had to change docs often. But, he's retired now, and I'm loving my new docs. It is always a good idea to lead the doctors. Tell them you 'want' a physical exam. Or tell them that you have a new problem, and then they will take a little more interest.
On being Vitamin D deficiency, lots of Lupi's suffer from it, but don't usually know it until a routine blood test. And, the reason you might not be loosing weight and eating so little, is that you have shut down your metabolism. Eat good food, only watch your portions. I have made the same mistake. I was on prednisone for so many years that I put on the weight, and even though I'm off it, I still have a weight issue. It's tough to loose weight when you can't move like we used to.
Keep the faith...
Hello Welcome back!!! Lupus require alot of giving things that we don’t have room for! If it isn’t one thing it is another thing always-smile. But we deal with it as best as we can. Holding on to Faith and prayer helps alot! Hope this doctor suites you . Hope everything turn out well for you…Beverly L.
Jazzmin,
When first diagnosed, the first year really, it's a matter of finding what works for YOU!. Please, don't think that the only answer in in a coffin. You will have ups and downs, unfortunately the nature of the disease. My Rheumy always checks my Vit D and many times prescribes prescription strength Vit D 50,000 i.u.'s which do help. I find that many times it comes in conjunction with anemia and low vit B-12.
My Rheumy, along with my Gastro have attributed to this being a problem with digestive tract not absorbing vitamins from food through my bodies "normal" absorption system. Not being outside certainly does not help, although it does not hurt to ask your doc which foods are high in Vit D as well as if your intestines could be compromised and not absorbing nutrients correctly.
You will find a balance although there will continue to be ups and downs.
You are strong and most importantly willing to look at options.
The best thing that I have done is to keep a journal ( I know it's a pain in the "you know what" that notates what you ate, how you felt, how you slept, etc for any new doc.
Biggest hugs and feel better soon,
DeAnne
Thank you all, so much, for the informative and supportive responses. So much good information and good advice. This disease has been such a life-changer, but knowing what's going on, after not knowing for so many years, is a great sense of relief. The last 7 months have really been a learning experience! I knew next to nothing about Lupus before I was diagnosed with it. In doing my own research I have discovered not only a lot of things about Lupus, and my own body, I have become familiar with so many other autoimmine diseases and other things that could crop up, in the future. My first discovery, though, was this forum. Our fellow members have taught me so much! I need to make myself make time to visit more regularly. This place has been my rock!
Hi!, I totally agree finding what works for you!! That was so hard to do the first 4months. Everything came down for me and having people /family really helped to boost me back into Life!,smile Remember that it is not what people say /think/feel , it’s all about YOU!! My granny use to say nothing beats a failure but a try, meaning before you put your foot in your mouth (down yourself), you got to try !!! Don’t give up that is what Lupus wants , even though sometimes the will power that you have goes a bit over board at times (depression). Try journal(write everything down)compare your days on a scale 1 to 10 (10being the worest). , seeing things wrote down works better than trying to remember what happened last week or two days back -we have momery fog alot sometimes , that is what make people look at us crazy , lol. But once again things will work out for you just take your time at you owe yourself that much-smile take care and if you need comfort , you know what to do. Log in…Beverly L.
whathappensinvegas said:
Jazzmin,
When first diagnosed, the first year really, it’s a matter of finding what works for YOU!. Please, don’t think that the only answer in in a coffin. You will have ups and downs, unfortunately the nature of the disease. My Rheumy always checks my Vit D and many times prescribes prescription strength Vit D 50,000 i.u.'s which do help. I find that many times it comes in conjunction with anemia and low vit B-12.
My Rheumy, along with my Gastro have attributed to this being a problem with digestive tract not absorbing vitamins from food through my bodies “normal” absorption system. Not being outside certainly does not help, although it does not hurt to ask your doc which foods are high in Vit D as well as if your intestines could be compromised and not absorbing nutrients correctly.
You will find a balance although there will continue to be ups and downs.
You are strong and most importantly willing to look at options.
The best thing that I have done is to keep a journal ( I know it’s a pain in the “you know what” that notates what you ate, how you felt, how you slept, etc for any new doc.
Biggest hugs and feel better soon,
DeAnne
Enjoy your moments !! Remember that you are not alone and we are here 24/7/365 days -you have to Login !!! Keep your head up , this will be a long ride. Fighting on the team that will beat Lupus one day!!!..Beverly L.
Jazmin said:
Thank you all, so much, for the informative and supportive responses. So much good information and good advice. This disease has been such a life-changer, but knowing what’s going on, after not knowing for so many years, is a great sense of relief. The last 7 months have really been a learning experience! I knew next to nothing about Lupus before I was diagnosed with it. In doing my own research I have discovered not only a lot of things about Lupus, and my own body, I have become familiar with so many other autoimmine diseases and other things that could crop up, in the future. My first discovery, though, was this forum. Our fellow members have taught me so much! I need to make myself make time to visit more regularly. This place has been my rock!