Lupus Support Group

Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.

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Benne73 01/15/2018

Hi, anyone who will listen and help me make sense of what is happening to me. Struggling! Here is my story so far..

Last year after other medical issues (have endometriosis diagnosed in 2008 and have had many laparoscopies including partial hysterectomy), starting to experience knee pain. Have had this on and off before but x-rays/blood tests have never showed any problems in the past. Anyway, last year about June time I noticed was particularly bad. I decided to go outside and sit in the garden and have my cuppa tea, was there for literally 10 minutes and noticed on both legs (one slightly worse than the other had come up with what I now know was like mottled skin kinda patches red ones all over my legs - my knees were particularly bad this day. I came inside immediately and was freaked out. This had never happened to me before in the sun. A few hours later I felt really unwell, like I had flu, I was really cold and achy all over. For about two weeks after that I had really bad night sweats - my sheets were soaked and I am not a person who sweats at night.

I was concerned, so I went to Drs and saw a rheumatologist who looked at my pictures I took of my legs and took down my symptoms. He did loads of blood tests ANA included and they all came back negative. He put me on steroids ( a lowish dose he said) for two weeks just to see if my symptoms - aching improved. It did, then returned after I had finished them. He told me to stay out of the sun and go back to him in a few months. Symptoms were coming and going so he did yet another blood test and put me on Hydrochloriquine (probs spelt wrong!!lol) as he said he thinks I have a connective tissue disease but unsure which one.

Joint pain got worse and was feeling in knees, ankles, wrists and a bit in fingers/toes. He gave me a steriod injection which helped for about 3 months. Seems that's worn off! Plus this weather probably isn't helping much either.

I know have joint aches/pain in knees, ankles, wrists, fingers/toes and starting in elbows too. I also get red across the knees and rashes and also ulcers on the inside of my lip that come and go. Went to Drs last wed going out of my mind and needing answers as fatigue is soo bad also. He took bloods but results not back yet. Have been referred now to St Thomas' to see if they can figure out what CTD this is. Which I am pleased about, hopefully I will get answers.

I am really finding this hard to deal with and it is affecting my life so much. I also have IC (Interstial Cystitus/Painful bladder syndrome) which was also diagnosed last year.

My question is really if results come back negative again does that mean I definitely do not have lupus? Also, does anyone relate to symptoms I am having?

In need of someone to talk to as I feel really lonely with this, i feel like I am going mad and almost like no one believes me. Does this make sense to anyone?

Wishing anyone who reads this post well and sorry for the length!!

AEG 01/15/2018

I am glad you shared your story. Your story is so familiar- one that I, and probably many others have gone through. You are so strong to continue to push onward. If it is Lupus, it may take many years to get a diagnosis. All of things happening to you are not in your imagination, find comfort in knowing that others have walked the same path. Keep a pain journal - with specifics- include symptoms, as well as other things - duration, weather, foods that may have been associated with your discomfort on that day. The info will help you on this journey and make connections. Do not feel alone because you aren't alone, and others have been there and are on the other side of this- I am just recently dx with SLE, and it all makes sense now- but now I am trying to find a medicine that will begin to change my numbers- no luck yet- we are warriors and you are not alone on the battlefield.

rcykb1 01/23/2018

I also have UCTD and then I moved to another country and there was diagnosed with lupus because they said I had enough symptoms and episodes to say it is lupus. I recently went to visit family and saw my old doctors who still refused to say that I have lupus because my labs are not conclusive, she still says it is uCTD. These are very difficult to diagnose conditions so you might get conflicting answers. However, the good news is. both conditions are treated the same way so don't fret over the diagnosis, BE sure to mention all conditions to your rheumatologist as endometriosis is believed to be an autoimmune condition as I believe IC is as well and there might be a link to some or all of the diseases. Many of us have more than one. I have IBS, Hypothyroidism, Idiopathic Intracranial Hypertension, Endometriosis and Lupus

Kimhurts 02/22/2018

Ask your doctor if they make sero-negative lupus diagnosis. If they don't, you may never get diagnosed and it may be time for a new doctor. Some doctors go strictly by bloodwork but only 80% of lupus patients ever test positive.

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