LUPUS UK
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Lupus/Sjogren's diagnosed last week

Lupus/Sjogren's diagnosed last week

Hello everyone! I'm Jen, newly diagnosed and I live in the United States, in California. This is one of the only support groups that I could find so I hope it's ok that I joined. I'm on a roller coaster just like the rest of you. However, I'm finally happy to have a diagnosis that doesn't say I'm a hypochondriac, needs mental health treatment, or any of the other ridiculous things I've been told over the last 10 years. My swallowing is affected and I have chronic microvascular ischemic disease. I'm wondering if the Migraines are connected to Lupus and if anyone else has this problem? Maybe you have pointers to avoid migraines. My body is in a constant state of pain and I have soreness in my muscles. I take 0 medication because I haven't been to the Rheumatologist yet. I guess I'm looking for pointers.

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You are very welcome Jen. I haven't very much advice to offer straightaway, but you'll find a great deal of support and help here. Many of us have had similar experiences in terms of being dismissed by medics, and even doubting ourselves.

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Welcome Jen! Yes, amongst other symptoms I suffered with the worst headaches I had ever had leading up to my diagnosis. I used to get them everyday until they became migraines. At one point they even thought I had experienced a bleed in my brain as it was so bad. It all turned out to be lupus and since I've been on my Lupus meds I rarely get headaches anymore unless I am in a flare and they are still nothing compared to how they were before I started meds.

Let us know how you get on, keep us posted and good luck x

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Wow, our symptoms are very similar. I too experienced bleeding on the brain. The scariest symptom for me is the confusion that seemed to come along with the migraine. I'm totally holistic so I'm not sure that will be possible with Lupus. I haven't read about any holistic treatments yet.

Thanks a million for taking a minute to respond.

Sincerely,

Jen

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You are most welcom Jen.

You have found the biggest resource you could find about Lupus, and a world of information besides.

I am sure you will get a lot of love and replies.

Best wishes

⚽️

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Thanks so much for the encouragement. I've been sick for so long and denied a diagnosis. I feel good knowing that I'm not alone and that my symptoms are not psychosomatic as some of the professionals would have had me believing.

Jen

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I have Lupus SLE, go to the Lupus Foundation of American site. It is the best one out there. The messages board is awesome. You will fit right in...

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Thank you for pointing me in the right direction. Finally a place to fit in👍

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👣👣👣👣👣👣👣👣👣👣👣👣👣

Hi Jenbo;

Welcome to our community. It is fine that you are from the U.S. (So am I) I have been a part of this family for 1 1/2 years now.

The people here and can give you some great advice, and chances are some of us have gone through or going through what ever your issue is at the time.

We Here can bring tears to each other's eyes, some tears will be from sadness, other times it will be from laughter.

I have lupus (SLE) I am a 56 year old guy from Alabama.

Most of us have found that lupus effect us all in different ways, but effects us all the same. That does not make sence but, then, neither does lupus.

I have my motto, you are welcome to use it also.

👣I will not let lupus control my life👣

Lupus has changed my life but it does not control my life.

Due to lupus issues (rashes/blister on my right foot) I have to go barefoot and have had to go barefoot for the last 2 years. (Life changed because of lupus)

In the photo you posted, is that a rash on your chest?

I wish for you the best!

👣👣👣👣👣Tiras👣👣👣👣👣👣

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Hello Tiras,

I'm sorry to hear you're having to go barefoot, I hope you're not in any pain. It must be cold there in Alabama?! Does it ever heal up?

I like your motto and I have been saying "I have Lupus, Lupus doesn't have me." The truth is, I'm afraid of what this disease can do if it decides to. So far it's changed me too. I've been trying to get through grad school since 2012. I desperately want to be a drug and alcohol counselor but, I'm not sure I will be able to work.

Isn't this the craziest illness? I mean it's so crazy! I'm finally happy to label what's wrong with me just so people don't think I'm CRAZY anymore.

I tried to upload a picture of me but I'm not sure it ever uploaded. If you can see that picture then yes there's a permanent rash on my chest and my face.

Sincerely,

Jen

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👣👣👣👣👣👣👣👣👣

Jen;

No it is not cold here, and in my part of Alabama ( it is still in the mid to upper 80's here) it doesn't really get that cold so, going barefoot is not an issue. Besides I have gotten use to it and going barefoot is more natural. Actually now I don't want to wear shoes even if I could. The bottom of my feet are so tough now I can walk on any surface rocks, cement, even hot asphalt, and it doesn't bother me. The rashes/blisters are on top of my right foot so, no they don't hurt, as long as I don't wear shoes and rub raw places on my foot. If I wear shoes the skin where the rash is, the skin is thin and shoes will rub it and it will start bleeding in couple of minutes.

I have had a rash/blisters on my right foot for just a little over2 years, my doctors told me it is as good as it will ever get. You can go to my home page and see photos that were posted of my foot.

The rash/blisters is just one of the issues I have with lupus. There are sever more! I have had rashes/blisters where my leg joins my body in the crease where the skin moves, these are verse uncomfortable!

I hope you can do everything you had planned for life, but, with lupus it will be hard. There will be days you don't feel like moving, to say lupus won't Change you life, well that's just not true because, it will.

The only photo I saw was the one on your original post. I assume that is a photo of your chest with the rash? The rash on my foot looks somewhat similar to that. The same but, yet not the same. That's lupus for you.

I hope you have a good weekend.

👣👣👣👣Tiras👣👣👣

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Hello,

Welcome to this forum and I hope you will find it a useful source of support and information.

As someone who has been diagnosed recently you might find our information pack useful and you can request it here lupusuk.org.uk/request-info...

Our website also has various other leaflets about the condition and associated issues lupusuk.org.uk/publications/

Headaches can be common in people with lupus and you might find this publication useful lupusuk.org.uk/wp-content/u...

Hopefully an appointment with a rheumatologist will also help you manage your condition further.

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Oh WOW, the "brain" handout gave me some hope. I would love to return to normalcy and to be able to focus and work again! Thanks for sharing.

Have a wonderful day💜

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Welcome. As a woman diagnosed in 30’s due to WCell count, I was fortunate to get diagnosed quick RA SsA SsB Sjogrens. Have been on plaquinil for years.. BUT I’m older, Lupus sle and prednisone accelerated ostiopena to osteoporosis. Migraines.. light sensitivity, nausea, my best friend is a dark quiet room with ice on eyes, temple and neck.. maxalt for extreme.

Met new Rhemy.. getting too weak.. and Imuran will try depends on blood.

Homeopathy is always preferred. Rashes can be horrible or saliva glands

Freeze. But it’s doable with exercise diet and outlook and support. I’d seek

A rheumatologist you can gel with. Maybe join local lupus.org support group. Very organized. Read everything. Hoping a bit may help. 😌

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