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Discussion Starter · #1 ·
Hi,
My name is Charlotte and I am looking for people to talk to about lupus.
I have been going to the hospital since I was 14, when they first caught my thrombocytopenia (after a blood test for what they thought was tennis elbow!). I was diagnosed at 18 when I came to Leeds as they have an amazing rheumatology team here. I am on prednisolone, plaquenil and cellcept (mycophenolate) as I didnt' really take to the azathioprine. I also have to take antihistamines everyday as my allergies are quite bad.

The main reason I got diagnosed however was because my symptoms have been getting steadily worse over the past 2 years. Is this normal? I seem to have had two major flares around March, one in which my platlets dropped dangerously low, and the other where I came out in a lovely blotchy rash on my face!

I understand other people have symptoms like this but I guess what I'm asking is do other people find it is worse at certain times of the year? I have noticed that I feel worse on sunny days than I do when it's cloudy.

My friends don't understand why I have to wear factor 50 sunscreen, and they also don't understand that if I go out for a short walk, why I can't walk back (I should learn really but I'm abit stubborn :wink2:). I think I just need to talk to other people with lupus who understand more what I'm going through.

I am having a problem with my foot at the moment actually, and my pain killers don't seem to work. Is there anything people can suggest to help or is it just a grin-and-bear-it sort of thing? I haven't had joint pains like this for long, its usually worse in my back.

Thanks for reading,
Charlotte
 

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The Other Illinois Tammy
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Charlotte,
Hi and welcome to the site. I do hope that you are finding it helpfull to you and supportive. I got to the point in your thread where you say you feel worse on sunny days then on cloudy ones. I had to shake my head and smile. I love cloudy days just for that reason and even rainy days. Just remember that cloudy days are just as dangerous as we feel safer to be out longer since the sunny is hidden from us. The affect is the same unless it is night outside.

You do know that the spf number means how much time can pass before reapplying right? I have found that the number often has to be cut in half for me and most of the time don't work very well at all for me. I do hope this is not the case for you.

I have went for a long time without progressing with the lupus or it was in very small amounts at a time that could be listed as over work or something else. Just when I thought things have leveled out, I have fallen to almost the bottom of the ladder again. This all translates to yes over time you can get worse, but the up side is at some point you have to level out or start getting better. You can get some pain pills for the joint pain it might take some time to find the one that works for you.

I know it is scary, but we are all here for you and can almost answer anything as there are some real smart people on this site. I find them more reliable as they live what I live everyday and my doctors don't. Value their advise as it is some of the best in the world. We are all far from being doctors but are good at life and living a life with lupus. I do hope that you are feeling well and doing well today.
 

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Hi charlotte, seems we take the same meds , i to was on Azathioprine, whichj i thought worked well ,but this january got moved to cellcept, for cns, i find summer worse for me as it kills my joints, i hurt more this time of year, as for pain killers, i havnt found any to take away all of the pain, i have tramadol, co codamol,cant take others, I like you have had a bad run of late, when i got Dx in 2000,things were as they put it MILD grrrrrrrrrr!!! we hate that word here, there is nothing mild about sle.

i really hope you get some relife soon, and a big welcome from me

take care Lin xxxxxxxxxx
 

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Discussion Starter · #4 ·
It's nice to hear that I'm not the only one who gets irritated by the word "mild". Mydoctors tend to say that too me right before a flare up, I feel a little like I'm jinxed!
My boyfriend seems to feel slightly like, well I don't know how he feels exactly, frustrated he can't do anything to help I guess. It leads him to say things like "the pain is probably mostly in your head" and "if you stop thinking about it it will go away". Sometimes I wonder if the pain is slightly in my head. But when you can't put any pressure on your foot without it hurting its a little hard to ignore!
I take cocodamol but spoaringly as I worry about getting addicted. I guess there isn't much you can do about that is there. Has anyone got any tips for that sort of thing?
 

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Hello and welcome!:)

I'm sure you'll find this site a GREAT support!!:)

I too am under leeds rheumatology team -Dr Martin at Chapel Allerton
Rachel
 

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Hi Charolette,

Welcome to the lupus site.

Sun screen is very important to use. Going out doors or shopping, doctor offices. The last two I am referring to is the lights that we sit under.

There is good information on the site and very caring members who are willing to share their experiences dealing with lupus.

This explains what "spf" means.

SPF is not an indication of how much time you can spend in the sun. For example, if you use a sunscreen with an SPF 30 rather than one with an SPF 15, it doesn't mean you can stay in the sun twice as long. In reality, an SPF of 15 filters out about 93 percent of the UVB rays; SPF 30 filters about 97 percent of UVB rays. The beneficial effects of sunscreen decreases over time, so after a few hours the difference between the two may be even less.
Don't rely on the SPF factor to decide how long you're safe in the sun. And don't count on your skin to tell you when you've had too much sun. It may take up to 24 hours for a sunburn to develop fully.
I found it here.

http://www.mayoclinic.com/health/sunscreen/SN00044

Take care,
Lyn
 

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hey charlotte nice to meet you, just wanna say I am always around for a chat! I'm michele, 23 from kent uk. I was diagnosed when I was 20. on xxxxx :love:
 
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