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!!