Is it a Lupus Flare, Celiac flare, or menopause...?

[jash55]

I am new here. I was recently told my symptoms were Lupus, so I am trying to learn about this. I have all the symptoms but not the butterfly rash on the face. My last test in 2012 came back negative for Lupus. The New doctor wants me to go to the Mayo Clinic, but honestly I am fed up with the MRI's, CT scans, blood tests etc. etc. just to be told the tests are fine. I have been sick for 30 years or more. My sister thinks I am being irresponsible, but I am allergic to everything (foods, mold, grass, long list) and most medications, so what is the point. When I started to get really sick, I had already had Mono 2 x, then one day out of the blue, my hands started to burn - as if they had acid on them. This still happens every once in a while. I was told it was menopause. I was 30 yrs.

I sweat, then chills = meno pause.??? I don't even know when I have a fever. I went to the doctor for something else and I had a fever...did not even know it. I was sick with double ear infections and pneumonia and did not know it because I always feel like crap.

I meditate when I get all these symptoms and try to move through them, I feel like a nut case, a hypochondriac.

I am having a flare up, a week now. I think the sun started it. After reading all the posts,

I feel a little less nutty. How do you know when to go to the doctor? Is there any point in going to the doctor? Does acupuncture work? I use an anti inflammation diet , GF, Dairy Free, sugar Free, try to exercise. What makes this better? Thanks J

[honeybug]

Hi jash55😊🌸🌿🦋

Welcome to the forum. 🌿🌹

I’m sooo sorry that you are sick so often. You’re not alone all of us on here have one or multiple conditions and know very well what being sick is like.

You’re not a hypochondriac when you’re sick you’re sick. So many people who only have the occasional colds flu or minor curable illnesses are truly blessed and unaware of it. They don’t understand what it is truly like to be chronically ill and often times with incurable and/or little understood rare conditions.

However coming to this forum you will find so many wonderful people here that are going through it and can guide you advise you on symptoms doctors meds give support and empathy...plus they make the best kind of friends too.

🌸🌿🌸🌿🌸🌿🌸🌿🌸🌿

Don’t ever let anyone suggested you don’t know what you are feeling/experiencing. It is your reality and anyone who does this is wrong to do so!!! If it is a doctor then find one who will listen and believe you. Ask others on here who is like this and make your choice from there.

🌺🌺🌺🌸🌸🌸🌸🌺🌺🌺

Surround yourself with friends that are positive and supportive and believe your explanation of your symptoms and limitations. It sure helps to have family like this too

Most important is to feel supportive love. If that’s not a possibility from your family and friends I’m sure you will get it from the forum members. We are all here to give that and find it as well.

💦🌈💦🌈💦🌈💦🌈💦🌈

Yes it is important to go to the doctor when you’re ill. Especially if you have lupus. It can attack so many parts of the body and due great damage. Not everyone gets every symptom of the disease. But the sun is one of the bigger triggers and if you feel it caused your current flare then by all means see your rheumatologist soon. If you get on some sort of medicine regimen it is possible to manage the progression better.

🦋🌺🦋🌺🦋🌺🦋🌺🦋🌺

I too am allergic to so much it might be easier to list what I don’t react to. It does get overwhelming and so dreaded to go for all of the tests and feel like a pin cushion from all of the blood draws but when we have a serious chronic illness that is the only way to determine what our insides are doing. I hate all of it too but know it’s necessary. Maybe it would be helpful to keep a detailed record/log of your symptoms affects of activities and exposures I do this. Take it to your appointments so you won’t have to try to remember it all when so many facets are involved.

💗😊💗😊💗😊💗😊💗😊

Try not to stress out about things. It is proven that stress negatively affects us and makes us sicker.

If you’re depressed or low do something positive listening to calming music 🎶 or watch a feel good movie 🍿. Whatever activities bring you happiness and a peacefulness will distract you from your feeling bad during flares. Try having an understanding friend/ loved one over to help you get through the tough times....or you can always come here there are wonderful souls here who love to support its members. 💗 Best wishes.

Take care and abundant blessings

😊🌸🦋🌿 🤗💗😘

[whisperit]

Hello jash55

Lupus and the related conditions are especially messy, and we all sometimes feel that we need help and support from people with a lot of experience in dealing with such complexity. At these times, most people seem to find some medical advice and treatments helpful - even life-saving,

I guess most of us here have experienced disillusionment when we realise that not only do some doctors not listen to what we are saying, but even those who do cannot give us a clear-cut diagnosis or definitive treatment. Medical advice is just another perspective on your experience, which you can take or leave as you choose. But better outcomes are going to result if you try to weigh the evidence and follow people you trust. For all their faults, doctors in general are trying to help! x

[Chanpreet_Walia LUPUS UK]

Hi Jash55,

Welcome to the LUPUS UK HealthUnlocked Community! We offer a free information pack which you can download or request at lupusuk.org.uk/request-info...

I am sorry to hear that you’ve been experiencing ill health for quite some time now. Flu-like symptoms such as night sweats and chills and sensitivity to light are common symptoms associated with lupus. Certain triggers like UV light can cause people with lupus to experience a flare of their symptoms. It is important to bear in mind that lupus presents differently in everybody therefore, no two people will share the exact same experience i.e. experiencing a ‘butterfly rash’.

When experiencing a flare of symptoms, being tested for lupus is a good idea as a flare usually represents higher disease activity within the body. To find out what tests and criteria are needed in order to make a diagnosis of lupus, click here lupusuk.org.uk/getting-diag...

Complementary therapies such as acupuncture can be helpful in relieving symptoms of lupus such as muscle/joints aches and pains, however, it would not be sufficient in treating lupus. Some people find an anti-inflammatory diet can be helpful yet; this varies from person to person. What may work for one person may not necessarily work for another. We published a blog article on lupus and diet which you may like to read here lupusuk.org.uk/diet-and-hea...

Meditating is a great way of relieving any stress or worries that you may have. Stress is an important trigger of lupus, we published an article on our blog about stress management and relaxation which I hope you find useful: lupusuk.org.uk/stress-manag...

Please let us know how you get on, wishing you all the best.

[Angelann69]

It sounds to me like a whole lot of unscrupulous uncaring doctors have been just too damned lazy to figure out the underlying problems. This makes me so angry and I'm sorry you've had to go through this. I wish I knew of a doctor that I trusted to really work to find the original problem and build on that, but I don't. I hope you can find a good diagnostitian soon.