Am I a hypochondriac?

[Indiev23]

I have just been diagnosed with Rheumatoid Arthritis. Before this I have had severe pain in my chest which was put down to RA. I am waiting to start proper treatment and have been given a steroid injection in the mean time.

rewind to last week, the pain in my chest was literally taking my breath away and I woke up with a lump on my collar bone. I went to the GP who immediately sent me to A&E.

whilst at A&E (who I can not fault in the slightest) they did a CT scan and they said they had only seen one person like me prior to this and were honest enough to say they didn’t know what to do. Between the joints of my collar bone, they were unsure whether it was inflammation or infection but it had started to erode my joints and cause the bone to break down in my chest which was now spreading to the rib cage .
they were worried whatever it was would spread to my heart so started IV antibiotics and had me in a side room for over 24 hours till they had some kind of plan.

again I can not fault A&E, they were very apologetic for my wait and said they were involving the medical director to find out what would be the best plan as orthopaedics said it wasn’t their area and I should go on to a heart ward.
at this point I was in quite a lot of pain and the swelling in my chest was becoming larger. I had seen so many doctors and consultants in A&E who were going to transfer me to a specialist hospital, put me on such and such ward but by the sounds of it none of them wanted me LOL.

after nearly 30 hours I finally got transferred to an orthopaedic ward and was told a surgeon and a rheumatologist would be round to see me the next morning and that I had to stay on antibiotics to hit infection head on as my bloods were showing infection.

to make it clear I had asked SEVERAL times could
i please go home and I would come back the next morning. I can’t told no, it was too dangerous and that I would be seen first thing.

The next morning (yesterday) a surgeon came to see me. He asked for the whole story and then started to laugh. Said he didn’t know why I was on this ward, he didn’t want me and made it quite clear to the consultants and I was taking up a valuable bed. Said I didn’t need to be on antibiotics as it was quite clearly just inflammatory and that I had to accept it was part of my condition and that he was stopping it all. He suggested I volunteered to stay in hospital and I was some form of hypochondriac who didn’t need to be here. Said I was more than welcome to just leave. And then left me.

I was obviously in tears as I was so worn out and a nurse came over to me to ask if the reason I was crying was because I was going home and I should be happy. She took my cannula out and said to ring my rheumatologist when I got home.
I got home to then be told quite rudely off the secretary that the rheumatologist was on the way to the hospital to see me and why had I left? She then rang be back an hour later to say the clinics weren’t for another 2 months but she would make an appointment for me next week and to contact my gp for pain relief until then.

I am totally flabbergasted at this situation and really don’t know what to do now? I’m in absolute agony still and don’t know where to go from here. The manager from A&E called me last night to apologise and give me the doctors name and that I needed to complain and that if anything was to worsen to go to a different hospital for care as she didn’t want me dealing with these doctors again.

sorry this is so long and seems like it’s written by a 5 year old. I’m just so tired and in pain. Has anyone had any experience with RA and is this normal for the bones in my chest to do this? But I don’t want to go elsewhere for a second opinion incase people think that I’m just being dramatic.

any help would be massively appreciated xx

No you are not.
In September my partner had a heart attack.
During strikes he was told.he could.leave and they would.fill.the paperwork out.
Angioplasty was rushed so whole .section missed
During the follow up was made.an urgent appointment with cardiologist who did Angioplasty
Told his symptoms were asthma , do you not think I did my job properly and discharge
Because needs an op that needs cardiac sign.off.saw big boss last week,.had another Angioplasty too moo uo what was missed and had another heart attack.

Point is, nhs is under pressure you didn't take yourself in, or ask to stay. When you're stronger speak pals

Im sorry your husband went through this! Hope he’s okay x

Fingers crossed its fixed now.
Honestly soeak to PALs have a clear goal in mind at the very least it's an audit trail

Did he actually say he thought you were a hypochondriac? In those words?

It sounds awful.

It sounds like lack of communication between a&e and the other departments in the hospital. None of that is your fault.

Honestly op, it sounds like you were just doing what you were told. I don’t think you’re a hypochondriac at all as you clearly are in pain. I’d go for a second opinion if I were you. This is your health at the end of the day, and more important than some doctor maybe thinking you’re overreacting. There have been too many stories recently of people being misdiagnosed, or treatment being started too late.

OP, is there anyone who can go with you and advocate for you?

You wont make it two months until the rheumatologist has “clinics open” or whatever, and with the agony you’re in (which I think I may completely understand - it’s happening to the bones in my lower back and may have now started on my elbow), you may not even make it another week without needing to seek help. Without painkillers, I am unable to eat or sleep.

I imagine your sleep isn’t great already, then it was made worse by the hospital, leading you to not be able to say much when a doctor came and completely disagreed with everyone else you’d seen. Yes, maybe if you’d been less tired or in less pain, you would have been able to tell him that 30 doctors before him disagreed and maybe he should look at your fucking scan first and you were waiting for a rheumatology consult BUT you were beyond vulnerable. This is when you really, really need someone to advocate for you, if it’s possible.

My only recommendation would be to try a different hospital if you have one close and that’s at all possible, even though I know it’s still a gamble, or go back to the same hospital with an advocate (do NOT worry about not wanting to impose - if you don’t have a spouse or partner, or local family, many friends would be willing to help if asked). I know realistically you shouldn’t have to, but unfortunately, when cases get complex like this and there’s a risk of a lot of doctors who may not communicate to each other being involved, it can be hard to try to face it (especially disagreeing with a doctor and telling him to ring someone else) on your own.

I didn’t realize how damaging inflammation could be until it started affecting my bones. I (and the Swiss medical system ha) really rate 1g (so two 500 mg tablets) of paracetamol on an empty stomach. Paracetamol should be gentle enough to be taken on an empty stomach and if your stomach is empty, the absorption will be around 20 minutes, vs. 93 minutes. For inflammation pain, it’s as effective as some of the “harder” medications, though I know with your bone problems, you may need A LOT more help, with pain and movement.

I wish you the very best of luck, OP. And when you’re well enough, please do complain about this incident to PALS.

And please don’t think you’re a hypochondriac. That’s so dangerous. It can keep you from seeking help when you desperately need it. You did not imagine a positive rheumatoid arthritis test nor did you imagine the lump on your collarbone. All these things are completely real. So it seems logical to me that the pain they cause is real too.

You don't sound like a hypochondriac at all!!! And I'm usually quite critical of those who might be! You genuinely sound very unwell, and that you were just doing as you were told. That doctor sounds like a total prick! I really hope you manage to get some help x

Thank you everyone for taking the time out to reply! I really appreciate it and feel slightly better that it actually isn’t me being dramatic!
I will definitely contact PALS once I’m able to muster the strength 😂
I’m just worried about my chest but I have some antibiotics at home what I can take in the mean time and pain relief! X

I would put in a complaint about the doctor. If you are newly diagnosed how are you supposed to know what the problem is? It can be very difficult to tease out problems with RA (I have it too.) That’s their job to do, not yours, and they have done it badly. You have an appointment with your rheumatologist next week so I hope that goes well and you get the treatment you need.

So I suggest to put a complaint in and then try and put it behind you. You haven’t done anything wrong and no reason to feel as if you are a hypochondriac. You have a newly diagnosed serious health condition which you are trying to navigate and learn about and it will get easier with treatment and experience. It’s a very scary time, I remember how I felt at the time.

I have no advice but just wanted to say my mum has rheumatoid too and she has been passed from pillar to post for about 3 years now, it seems as though no one understands this awful condition! My mum's also been accused of being a hypochondriac, at first was even told she doesn't have RA its all in her head. Inflammation in her neck and ears and chest, a doctor said it was caused by a flea bite! Other people she has spoken to have also been treated the same. I hope you do put a complaint in and hope you are ok.