Symptoms have me nervous

Well I have officially been losing my mind for the past 3+ years and have seen multiple doctors and gone down every rabbit hole online attempting to find answers, so here’s my story—

Several years ago I started noticing blood in my stool, I shrugged it off for a few weeks actually and then it noticeably got worse and then to the point of not having a BM for 2ish weeks then the night sweats started but I’d say considerably mild (for the most part, not always mild). Got scheduled for a colonoscopy and the results were no polyps but a diagnosis of proctitis. It was weird because after the procedure the blood issue literally vanished but the night sweats did not. Fast forward a year later and I started having excruciating pain in my abdomen. Not to the point of ER visit but a few times I was considering it. The pain was not specific to a certain area in the abdomen but it would attack with sharp pains randomly. I started experiencing chest pain as well and then anxiety also followed. Got an ultrasound of the abdomen and nothing was found. There was no blood this time, just shooting pain more so often right below the rib cage. So another colonoscopy was scheduled—this was at a different facility. I was told there were no polyps and they did not find proctitis but I had a tortuous colon. During this period my night sweats increasingly got worse and more frequent, at times soaking the bed sheets in the middle of the night (will post a picture). I was also noticing extreme fatigue no matter the amount of sleep I got. Then I had a random spell where for a week straight I felt almost light as a feather and tingling in my head. During that period I woke up one morning and my fingers on one hand were hurting and I thought maybe I had slept on my hand but days went by and the pain got worse. Then I woke up one morning and it was my other hand and I had noticed that every joint on my hand(fingers) were red and swollen so arthritis seemed to be knocking at my door. I go to the dr and get a ton of bloodwork done and my EBV levels were through the roof (<600) and Vit D levels were extremely low. I went to a rheumatologist and she took one look at me and said “you’re young and healthy you’re just fine). My night sweats are still happening almost every single night but sometimes I randomly go a week or two without and it seems like every time it starts back up it is worse and worse. Some nights I get up multiple times to change clothes. The other morning my hair was drenched and my pillow was wet. In the beginning I feel like I remember it being mainly my chest sweating the worse but now I wake up in the middle of the night and there is sweat pouring off my entire body…my chest, legs, back, neck…everywhere. I got blood work again last month and there were no real red flags so today I went and they did a blood culture from two sites. I’m just not even sure what to think anymore but it is affecting my quality of life—physically and mentally and I just wish someone could give me some answers. Has anyone dealt with any of these similar symptoms?? Desperate for some help!

Almost forgot, I have had a red rash on my chest that is itchy about 4 times in the past 3 months. It seems to go away within 24 hours time. Pictures attached.

Also, just to note—I’m 35 yo, White Female


Hi @Bnm88 a great big welcome to our forum.
I bet you have been really worried over the last 3 yrs, I find it really worrying not knowing.
You have posted on the Blood Cancer UK website, so I just wondered whether you are in the UK and whether you fear that you have a blood cancer?
Personally I like to write down all my fears, questions and practicalities before a medical appointment and be pleasantly assertive and ensure I get answers. So perhaps ask about blood cancer at your next appointment.
I am not medical but I think we are very complex beings and it is very difficult with evolving and generic symptoms.
Unfortunately we cannot give you answers and personally I also find anxiety does not do my mental, physical or medical health any good at all.
Really look after and be kind to yourself and let us know how you get on.

1 Like

Hi @Bnm88,
I really appreciate you taking the time to reach out to us all. It sounds like you have & still are going through a really a worrying time. Please do know that if it feels easier to talk things through with us, our support helpline is very much here for you- Blood cancer information and support by phone and email | Blood Cancer UK.

I’m pleased to hear that you are continuing to talk things through with your GP & ongoing tests continue. We know how difficult this can be when you are not receiving answers, so do keep raising everything with them. Should you continue to feel unheard, it might be appropriate to consider a second opinion.
In case it is helpful I have linked here to our webpage which lists ‘questions to ask your GP’ when worried about symptoms- Blood cancer symptoms and signs | Blood Cancer UK.

You mentioned you were previously noted to have low vitamin D levels. Can I ask if you have been prescribed treatment for this?

Take good care, Lauran