Is it just me or do the rest of you get confused when talking to your doctor? When I was first diagnosed I was told that I had Limited Systemic Sclerosis, then as the converstaion went on it changed from Sclerosis to Sceroderma. I figured that the Scleroderma was another symptom of the Sclerosis, but no that wasn't true. Some people call it Limited Systemic Sclerosis and some say it is Limited Systemic Scleroderma. Now my husband tells me that Scleroderma is the term for the skin invovlment of the Sclerosis and that when I fill in any forms or tell people what I have I should say that I have the Limited Systemic Sclerosis. Bleh I get soooo confused
Also when I go to the doctor with symptoms that I am pretty sure they are caused by the LSS, I get told that no they don't think it is caused by it, like the pains in my abdomen and torso area that are in connective tissue points, so one would assume that as Scleroderma (whatever you want to call it) is a connective tissue dissorder, that the pains would be caused by it! And one doctor tells me my foot pain is caused by the LSS, then the next visit, I see someone else who tells me no it isn't.
With the fatigue that I get, I was told that I needed to listen to my body and when I was tired, I should sleep and get up when I wasn't tired. Ok sounds good to me, but now at my last appointment. I was seen by one of the registrars and she told me that I needed to push through the tiredness and stay up, because if I slept during the day then I would not sleep at night! So when I do this, I get so tired I can't even think straight and I drop things and run into walls. LOL
It just seems to me that this is all guess work for the doctors and depending on who you see is what you are told. Makes me more than a bit angry when I leave my appointments, as you feel you are just a guinea pig, and they are trying things out to see what works, and if it doesn't work then you are told that the disease is very different for different people, when I think it is just a case of they don't have a clue!