Question:
I posted before about some links to info on lupus. Thanks for the ones I got they were great. I was just diagnosed with systemic lupus. I do not go back to my rhuemy for another few days. He has me on tranzadone and vioxx. The vioxx hasn’t seemed to help any but it has upset my stomach greatly. For me I have had spells on and off for the past five years but usually within a week or two they would be gone. This last time it started in July and has got nothing but worse. At first I thought I had a really bad flu bug. I hurt so bad and had a low grade fever. Then I started getting knots on my legs. I do not know if these are even from lupus. My fingers looked bruised all the time. I was constantly give out. It was all I could do to make it through one day with out a nap. I have been out of work for almost 3 months. Over the last 6 weeks I have had an awful time. I have feel 3 times, once was down 2 steps. I know that doesn’t sound like a lot of steps but to my body it did. When I talk I can not get the words out, I know what I want to say and sometimes I can even think it in my head but still can not get them out. Another thing I had noticed for a long time was hair loss. My hair is really long and I noticed that so much more than usual was coming out, but I had no idea that this would be related to my other symptoms. From what I read if you can get this under control you can lead a normal life. I am wanting to feel better and get back to work and my life. Does anybody have any suggestions for me? They would be greatly appreciated. Thanks
Response:
In article <CpNI5.53710$oA2.12698…@typhoon.southeast.rr.com>, Kim <kgaul…@triad.rr.com> wrote [] >When I talk I can not get the words >out, I know what I want to say and sometimes I can even think it in my head >but still can not get them out.
This is common – you are not alone! Many people have to point, or describe things, eg "that red thing we get the black drink out of" might do when you can’t say "coffee pot". — Andy For Austrian philately <URL: http://www.kitzbuhel.demon.co.uk/austamps/> For Lupus <URL: http://www.kitzbuhel.demon.co.uk/lupus/> For my other interests <URL: http://www.kitzbuhel.demon.co.uk/>
Response:
On Mon, 23 Oct 2000 02:30:58 GMT, you wrote: > I posted before about some links to info on lupus. Thanks for the ones >I got they were great. I was just diagnosed with systemic lupus. I do not >go back to my rhuemy for another few days. He has me on tranzadone and >vioxx. The vioxx hasn’t seemed to help any but it has upset my stomach >greatly.
You should let your doc know this ASAP. I waited too long after starting Naproxen and have never really recovered my appetite. <snippage> >other symptoms. From what I read if you can get this under control you can >lead a normal life. I am wanting to feel better and get back to work and my >life. Does anybody have any suggestions for me? They would be greatly >appreciated. Thanks
You just described the six months prior to and following when I quit my job. I would hesitate to say "normal" but you can certainly feel normal at times. Most of my days now are relatively pain-free – however, it is not without meds, sleep and watching that I don’t overdo things. Plaquenil did seem to help slow the hairloss considerably. There is a section in the FAQ that lists a few things you can do to minimize the symptoms and flares and perhaps help prevent them in the future. They’re not foolproof. This disease is quite unpredictable. Some days I think I’m strong and I go out for 30 mins in the shade and end up with a rash and exhausted. Other days I can go fishing for 3 hours (note – before 9 a.m.) and do just fine other than needing a little nap. STress really triggers problems as does hormonal change. etc. Part of dealing with this and reducing it’s effects on you is to learn what your particular system reacts to – foods, certain physical activities (I can sweep but I can’t mop, I can walk and ride my bike but I can’t stand in one place for more than a minute or so), cyclic changes, weather, etc. Take care, *********************************** KCat – I am not a medical professional. The contents of this post are based soley on my experiences and opinions http://www.ghg.net/schwerpt/mypage.htm http://www.ghg.net/schwerpt/aslfaq20.htm ("`-”-/").___..–”"`-._ (`6_ 6 ) `-. ( ).`-.__.’`) (_Y_.)’ ._ ) `._ `. “-..-” _..`–’_..-_/ /–’_.’ ,’ (()),-” (()),’ (((.-’
Response:
Kim, Unhappily, everything you mentioned is pretty standard for a lupus flare. ;-( Try taking the Vioxx after a meal, it is ’supposed’ to be easier on our stomachs than many of the NSAIDS but YMMV. Also, taking a list of symptoms & questions to the appt. may help the rheumy see the big picture; ie you have been flaring for several months. S/he may want to try something else like Plaquenil or prednisone to break the flare. This is a *very* individual disease, so people’s levels of function can be very different. Some people maintain a ‘normal’ life, some people are totally disabled, and there are many, many somewhere in between. You may want to consider a shorter hair style. Some think that the weight of longer hair causes more fallout; I found that I have less sore scalp & headaches with short hair. Just some random thoughts on the evening of my 60th birthday. I never planned on this in my younger days! But now I look my age, it seems as tho I’ve looked 60 for the past 15! <wry grin> — Nancy <nfarrel…@infree.com> "Kim" <kgaul…@triad.rr.com> wrote in message
news:CpNI5.53710$oA2.12698169@typhoon.southeast.rr.com… – Hide quoted text — Show quoted text -> I posted before about some links to info on lupus. Thanks for the ones > I got they were great. I was just diagnosed with systemic lupus. I do not > go back to my rhuemy for another few days. He has me on tranzadone and > vioxx. The vioxx hasn’t seemed to help any but it has upset my stomach > greatly. > For me I have had spells on and off for the past five years but > usually within a week or two they would be gone. This last time it started > in July and has got nothing but worse. At first I thought I had a really > bad flu bug. I hurt so bad and had a low grade fever. Then I started > getting knots on my legs. I do not know if these are even from lupus. My > fingers looked bruised all the time. I was constantly give out. It was all > I could do to make it through one day with out a nap. I have been out of > work for almost 3 months. Over the last 6 weeks I have had an awful time. > I have feel 3 times, once was down 2 steps. I know that doesn’t sound like > a lot of steps but to my body it did. When I talk I can not get the words > out, I know what I want to say and sometimes I can even think it in my head > but still can not get them out. Another thing I had noticed for a long time > was hair loss. My hair is really long and I noticed that so much more than > usual was coming out, but I had no idea that this would be related to my > other symptoms. From what I read if you can get this under control you can > lead a normal life. I am wanting to feel better and get back to work and my > life. Does anybody have any suggestions for me? They would be greatly > appreciated. Thanks
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