Hi - I am new here!

PamelaJ · Not So Newbie Joined: 29 Jun 2008 Posts: 7

Hello everyone,

I am so happy that I found this site! It will be nice to hear from people who understand.
I was diagnosed with Lupus around a year ago after many, many years of symptoms.
I have many muscle & neurological symptoms, but my MRI's, EMG and nerve conduction tests didn't show anything (almost 2 yrs ago). If I do too much I get where I can barely function and need to lay down. My legs feel weak & shaky, and it is difficult to focus and concentrate.....is this just really bad fatigue? I get almost instantly ill in the sun - heart racing, tingling, sick to my stomach and weakness in my legs. Anyone out there have the same??
Looking forward to hearing from you. Smile

Pam

KathyW1958 · Fierce Wolf Joined: 12 Jun 2008 Posts: 580

Hi Pam,
Welcome to the site. This site is wonderful. I get very sick from the sun as well. I get miserable headaches and flu like symptoms from the sun and the sun literally feels like it burns my skin when I have to go out in the sun for any amount of time. It is terrible. There are a lot of us that are very sun sensitive. There are also a lot of us in here that had to wait for years to get diagnosed. I think that that is terrible. I am glad that you are here. There will be a lot of folks who will post and they are all great. God Bless.

Kathy
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Lupus for many years. Like most of my life. Sjogrens that started at 35 and Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

Medications:
Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

Oluwa · Posted: Mon Jun 30, 2008 4:46 am Post subject:

Hi..welcoming you with open arms...

Yes, yes to all your questions and then some more symptoms tossed it...

Are you on any prescriptions, have you relayed your symptoms to your doctor. Many of our symptoms can be managed....

Side effects of your medicine?

At home..eating properly..balancing life with stress, with rest and activity?

Weakness is different from being tired...

Are you protecting yourself while outside? Hats, sunblock clothes? Layered clothes? Sun screen on the skin, sunglasses...stayin gin the shade...going outside before 10am and staying in til after 4PM is a rule...

Avoiding fluorescent lights?

Many of these things can help you to manage your symptoms...

Chat up, read about...lots of info, all friendly, loving, caring, experience people are here...all more than ready to share and help to make you feel better...

Hugs. Keep looking for your wellness.
Oluwa
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sits_inthe_corner · Posted: Mon Jun 30, 2008 8:58 am Post subject:

Welcome PamelaJ

Yes the sun is really affecting you badly. Cover up stick to the shade, and take vitamin D.

Hope you are feeling better soon.
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scarednewmom · Tadpole Joined: 25 Jun 2008 Posts: 20

Hey Pamela welcoming you with great big soft gentle hugs! I am sorry the sun is affecting you soo horribly.. I think its our worst enemy besides inflammation.. Ha! I haven't been quite diagnosed but had a positive Ana sed rate at 23 and hair loss! Yesterday I did a sun test and say in the full blown sun no protection and nothing happened! Any thoughts? Hm. Also sed rate of 233a that high? Ana titer what does that mean?

scarednewmom · Tadpole Joined: 25 Jun 2008 Posts: 20

Hey Pamela welcoming you with great big soft gentle hugs! I am sorry the sun is affecting you soo horribly.. I think its our worst enemy besides inflammation.. Ha! I haven't been quite diagnosed but had a positive Ana sed rate at 23 and hair loss! Yesterday I did a sun test and say in the full blown sun no protection and nothing happened! Any thoughts? Hm. Also sed rate of 233a that high? Ana titer what does that mean?

Saysusie · Posted: Tue Jul 01, 2008 1:00 am Post subject:

Hi Pam;
First, let me join in on welcoming you to our family. The symptoms that you've described are quite familiar to almost all of us Crying or Very sad

The debilitating fatigue is a very common symptom of Lupus and, yes, we have all felt the need to just lie down.
I do a lot of warning about the sun, wearing sun screen and protective clothing! However, I learned this weekend that, even taking all of those precautions cannot completely protect us from side effects. I went to an outdoor fireworks show and picnic, I took all of the precautions, including a big hat, sunglasses, long sleeves, an umbrella chair and sat under the shade of a tree. In spite of all of that, I became extremely ill. My muscles ached as if I had lifted weights, my temperature rose, I was extremely nauseated, had an excruciating headache, and basically could not move for an entire day. I spent 24 hours in bed the following day...I didn't even have the strength to get a glass of water and my husband had to help me to the bathroom. So, yes, many of us out here have reactions to the sun. You are not alone!
I hope that you are feeling better. Remember, there are lots of people here who understand what you are going through and who want only to help!
Again....welcome
Peace and Blessings
Saysusie
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rob · Wolf Joined: 12 Feb 2008 Posts: 548 Location: Maine

Hello Pamela,

Welcome! I have most of the symptoms you speak of. Terrible fatigue, extreme sun sensitivity, those are two of the more common symptoms. I also have some serious cognitive dysfunction, or "fog " as we call it. I was diagnosed with SLE when I was 36, I am now 40. I also have been recently diagnosed with MS. It's known as an overlapping illness. Such fun! Anyway, this website is the best one going, in my opinion. There are some great people here, and a ton of accurate info from people with years of experience dealing with Lupus. It's very active, and I don't think I've ever seen a single post here go unanswered. There's some pretty good humor and and things to make you laugh too. I'm glad you found us. Once again, welcome.

Rob
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It's better to be considered a has-been, than a never-was.