I have recently been given a diagnosis of Undifferentiated Connective Tissue Disease.
After a bout of gastroenteritis 4/5 yrs ago I started to experience pain and stiffness in my shoulders and hips I though I had bursitis . All blood tests and X-rays came back negative minus a weak positive rheumatoid factor - I was diagnosed reactive arthritis.
For the past year my symptoms worsened with horrendous mouth ulcers , reynauds in fingers and toes , chilblains , and constant recurring UTis ( E. coli + every time !!) as soon as one UTI ends another begins!! multiple strep infections in throat , severe fatigue , pyrexia, Neutropenia showing in blood tests. Weirdly all my symptoms occur at the same time, this drains me .
My gp sent me back to the rheumatologist .
Blood work showed only that my neutrophils were low, and I had a high positive ANA test.
My DS.DNA test was negative . I was told that had it been positive along with my ANA I would have been diagnosed with SLE ( lupus) but as it was negative I am diagnosed with Undifferenciated Connective Tissue Disease.(UCTD)
I have been on hydroxychloroquine for the past week , I feel very sick weak and tired . I've been assured that this will pass in a couple of weeks .
I feel totally confused and really alone . I don't know anybody that has UCTD. I don't know if it is even considered to be a real illness and taken seriously by doctors? Nobody that I know has even heard of it before which is frustrating.
im really struggling work wise at the moment as in the past year since my new symptoms arrived I just so happened to have a change in work area. I work in an NHS hospital . I have raised my concerns with my employer and requested to move to a quieter less infectious area as I feel that there may be a link between the area that I'm working in and my worsening condition but I have been met with difficulty. Again even though I work in a hospital , my condition isn't understood by any of my managers, HR team or even occupational health dept.
My collegues have been less than kind about my decline in health as I've been off work on multiple occasions and because of the nhs sickness policy I've had to come to work during periods of monitoring in some appalling states eg: when I have had a UTI and strep throat occurring at the same time and am unable to get to the doctor for antibiotics. I feel like I can't win , if I'm off work sick I come back to an awkward atmosphere and cruel digs about 'what's wrong with me this time' and if I come into work when I'm ill (because I'm threatened with termination of my employment if I take anymore time off) I'm made to feel bad for being unwell or looking like I'm just 'trying to get out of working' my shift.
When my bloods have shown that my white cells are low and I have raised it as a concern for my safety I have been given no alternative but to work with patients with infectious diseases ( eg: swine flu, meningitis , Norwalk virus, c.diff)
I tried to discreetly raise this concern once before the start of my shift and was told publicly in front of the entire nursing team "why are you here when you know that we have these infectious illnesses on the ward? Should you even be here?"
A member of staff was then asked to swap sections with me ( in front of the whole team again), she sulked and said 'if I really have to ' I felt so embarrassed and petty that I said I would just carry on as I was.
Really I shouldn't have been there however I am subject to disciplinary action and possible termination of employment if I take any more time off work.
I was told a few weeks ago that I had been allocated a position in an area that was perfect for me - smaller area and less infections this was great news !
Then I was called up on my annual leave to be told that funding had been stopped and this move could no longer go ahead unless I had it in writing from occupational health that I really did need to move area on health grounds . I went to occupational health who did back my reason to move area . I was then told that it would not be possible again as funding for my particular role was not going to be granted in that area . I have now been offered an alternative that is just as busy and just as infectious as the area that I am currently working in!!
I have involved the union as I am sure this is unfair ( to offer me a new position then retract it 3 days later) and will remain off work until my sickness settles wth the new medication and a suitable alternative has been offered .
Has anybody else had a diagnosis of UCTD?
I would love to hear from you , your experiences , how it makes you feel, how you cope ?
Is it normal with only UCTD to feel so unwell and drained/exhausted all the time ?
Do I have any employment rights regarding UCTD ?( is it considered an actual illness?)
Has anyone else had any experience like myself in the workplace? If so what did you do , how did you overcome it?
If there's anyone out there that can identify wth the things that I've mentioned , please , PLEASE could you reply if you have the time , I'm desperate to know that there are there people like me that actually exist and that I'm not just going crazy or being a baby.(as that's how people who have no understanding of this illness make me feel when I try to explain how it affects me )
Thank you for taking the time to read my post