I'm 46 and have been having spells of unwellness throughout my life. At 18 I was in hospital for weeks with HSP & ongoing kidney issues (iga nephritis) which got better in time.
I was told that it was quite rare to get HSP as an adult & I would never get it again. I've had many bouts throughout my adulthood some more severe than others, sometimes with kidney involvement, sometimes not. In addition to that I've had terrible problems with joint pain and stiffness. Various rashes on & off which I'm told are just reactions to something. I've had episodes of extreme exhaustion amongst numerous other symptoms.
In 2012 I was very unwell, pretty much bed bound for weeks, unable to walk with the pain, had a stay in hospital & was referred to a rheumatologist. I waited weeks to be seen & when I finally got there the chap barely lifted his head off the desk and I was in & out within about 5 minutes!
I was so demoralised & thought that I was obviously wasting everyone's time. Symptoms have persisted over the years but I felt so deflated I've never bothered going back to the doctor with the minor problems.
Over the past year or so the joint pain is ever present, I have terribly sore hips, back, hand & elbow pain. I went back & was referred to a physiotherapist for a "frozen shoulder" at one point. Again waited for the appointment, was told it wasn't a frozen shoulder then was asked if I was depressed because that can effect our overall wellbeing. I was incredibly tearful, mainly because I was in discomfort & nobody seemed to believe me.
This was then followed by weeks of swollen joints, joint pain and generally feeling unwell. I just put up with the pain until it became so frequent I was having more bad days than good.
I finally went back to the doctors as felt like I had something to show them. Was told it was probably HSP again and we'd probably had come to the end of the road. I did ask if it could be Lupus related. My sister has Lupus and my mum is under the Lupus clinic at Guys & St Thomas' and the doctor trawled back through my notes (I never get to see the same doctor at my surgery). After I saw the rheumatologist back in 2012 he had requested an ANA test & a follow up but this was never done! I was then told to book a blood test.
I had bloods done & was told to ring a week later, I went back to the doctors for the results but was told they hadn't done the ANA. I then had to rebook bloods for the following week. 5 weeks on I have now been back for the results. The GP says bloods are "perfectly fine" and there is no evidence of having any autoimmune disorder. It is good news, especially as I don't have Lupus but at the same time I still have the joint pain, stomach pain & sickness.
I have been told that most likely it is another bout of HSP, that I don't need to be referred to a rheumatologist and that I'm depressed. I've told them I have absolutely nothing to be depressed about & that whilst I feel down now, it's because of the joint pain etc. In the past I have been given a short course of steroids that usually helps get on top of things but instead they have given me a months course of antidepressants!!! (Which I'm not taking, as I know I am really, really NOT depressed, just in discomfort!)
I'm really confused that I've been told there are no autoimmune issues and yet they're telling me it's HSP, as I always thought that was what HSP was. I've tried to read up more on HSP and came across a lecture on HSP that says rheumatologists are submitting data for research so that more could be understood from that data, genetic factors etc. And yet as an adult who has had bouts of this since the age of 18, I am not even referred to a rheumatologist.
Surely I either have it or I don't! If I do I should be getting more support and if I don't they should be exploring what else it could be? The photo attached is how I was just a few weeks ago. Thankfully swelling and bleeds are now gone, I'm just left with painful joints, stomach pain and a bit of sickness now. Urine is fine (a bit of blood but no protein on first test, fine second) and blood tests all normal.
Sorry for the lengthy post but any advice would be most welcome!
Following Rituximab, is this expected or is there cause for concern
Am I stressing for no reason or does this seem like unfair treatment and a valid reason to be upset?
PREDNISONE TAPER AND DEPRESSION AND ANXIETY
I,m interested to know
what have I to do to get gp to listen
