View Full Version : Having a gooder day than yesterday and the day before and...

Taff in Oz
11-25-2005, 09:42 PM
Well today mentally I feel a lot stronger than I have for about a week...
Shame though the weather is on the change there is a storm brewing, and with the rain comes the pain..I am not as bad off with the pain as some of you on here, and I thank my blessings for that.. But does anyone know if things like, pain, brain fog, fatigue, get worse as time goese by ?
Or any sympton one may have connected with Lupus? Another question maybe someone can answer is.. 1 blood test 1 biopsy from my foot, and I was diagnosed with lupus. I find it strange cos many of you, have such difficulties being diagnosed, am I just lucky? My feet when cold are such a lovely shade of purple and just slightly red.....when warm, they are red hot and itchy soled. I was told by the dermatologist to keep them as warm as possible..I know they dont look nice when purple, but they are a lot easier to tolerate...Is there a reason for him saying this? and does anyone know why they are so very purple when cold? I have the feeling that they suspect Vasculitis but have not been told yes to it like I have lupus.Mabe that will come out when I see my rheumy on Dec 14 for the first time....Well if any of you read any of my other postings, I feel kind of embarrased now, cos i surely let it all out. I am not usually like that, could it be any medications doing it? Anyway hope you are all having one of you good days.. Bye for now Janyce (Taff in Oz) much love to u all. One last thing what is a Poll Question and option ?

11-26-2005, 07:09 AM
Hi Janyce;
Welcome to our forum and to our family :lol: I am happy that you are having better days. I wish for you to continue to have more good days and blessed memorable days!
I would venture to say that your early diagnosis was probably due to a very astute and aware doctor. Consider yourself lucky to have been diagnosed so early so that your treatment can start quickly. If, in the course of your symptoms, your doctors find that it is not Lupus but another connective tissue/autoimmune disease, you are still the better for it because most of the connective tissue/autoimmune diseases use the same treatments.
With reference to your cold/blue feet: ask your doctors about Raynaud's Syndrome also. This is a condition in which the smallest arteries that bring blood to the fingers or toes constrict (go into spasm) when exposed to cold or from an emotional upset. Smoking cigarettes or working with vibrating machinery also can cause these episodes. The small veins are usually open, so the blood drains out of the capillaries. The result is that the fingers or toes become pale, cold and numb. If there's a spasm in the small veins and blood is trapped in the capillaries, the fingers or toes turn blue/purple as the blood loses its oxygen. In most cases, people with Raynaud's only need to make minor lifestyle changes in order to keep those parts of the body warm. In some cases, however, vasodilators (medications that relax and widen blood vessels) may be prescribed to keep the blood vessels from constricting.
With reference to the "Brain Fog", there has been no clinical evidence of this condition worsening with the age of the disease, it is generally found to have a direct link with the presence of certain antibodies. However, cognitive dysfunction is common with lupus sufferers. Cognitive dysfunction could be described as difficulty thinking/concentrating, difficulty speaking, difficulty remembering and difficulty using numbers. It is reffered to by us as brain fog. It is estimated (from several studies) that between 20 and 40% of SLE patients have some cognitive dysfunction. Psychologic profiles, such as the MMPI or the Wechsler Adult Intelligence Scale are sometimes used in diagnosing our dysfunction (fog), but their results can be skewed by our many medications and our constant fatigue. Cognitive dysfunction can be found in children with SLE as well as with adults, and seems to correlate to the presence and level of certain antibodies (anti-dsDNA, lymphocytoxic antibodies, anti-neuronal antibodies).
Do not over stress yourself about it. Many of us have learned to adjust to it and have made our friends and family aware of the fact that they just have to tolerate and understand our brain fogs because it is now a part of who we are...we are not stupid, we are dealing with a symptom of our illness. I have an electronic notebook and I put absolutely everything in there with alarm reminders! It has worked well for me. Others keep notebooks, journals, calendars etc. We just adjust and figure out ways to help us remember things and then we learn to get on with our lives and live as happily as we can.
Peace and Blessings

11-26-2005, 03:13 PM
Also very glad you're feeling better Taff! :)

I was diagnosed pretty quickly as well - as SaySusie suggests, I had a very astute primary care physician. He almost went into rheumatology - so was clued in when I complained of all the fatigue, floating pain, and general crappiness.

Days are good, days are not so good. I think weather plays a part, though rheumies will tell you it does not. Damp cold, for me, is the WORST. Days when the barometric pressure is very low are hard as well. I compensate by dressing warmly most of the time, and when I can (almost weekly in the winter!) luxuriate in a long long HOT bath -- bubbles, bath oil, a large glass (plastic of course) of fruit juice to sip on, and a bunch of good magazines.

Many hugs -