No diagnosis, no solution in sight.

javasacrilige

I'm 21 years of age and in a lot of trouble.
Back in March I fell v. ill. First a wave of physical symptoms hit me, digestive issues, joint pain, extreme lethargy, chest infections etc. A sudden onset of ill health, I left it, passed it off as a flu and didn't go to the doctor. I had had a surgery in November for torsion. I had had a previous surgery when I was 16 for a varicocele embolisation on the same testicle. After November's surgery I had one complication, an infection. I took antibiotics for it. The antibiotics were stopped early by a local GP when I organized an appointment purely to renew my perscription the swelling had gone down so by his reasoning all was well. Fine. I had discomfort in the area that began about two months post surgery. This discomfort became worse right up to March when I became seriously unwell.
Back to March. I went from feeling like I had the flu to having severe chest pain, and like there was something eating my fricken brain. I ended up in hospital with neuropsychiatric symptoms of unknown cause, 2 weeks later the psychosis subsided.
I'm left with chronic pain pretty much everywhere. Im on antidepressents which help deal with the mental side of things. My chest bones and muscles ache. I've believed that I was having a heart attack and even a stroke countless times ECG and heart ensymes normal. I have no energy. Blood tests show nothing, I haven't had any scans since I was admitted in march. Ct brain Normal. Spinal tap normal. Back xray (interestingly enough) revealed numerous coils all over the gaff from my surgery at 16, otherwise normal.
I've been tested for lymes, for which my symptoms are basically identical, not the problem. I have high iron and thought to have "hemochromatosis" for a while. Apparantly not the problem. This is not the worst part of the situation.
I have suffered from bouts of health anxiety (nothing serious) since I was young. There is a history of depression and mental health issues in my family. As a result I have been dismissed as a hypochondriac by my family and also by MANY of the GP's I have been to, which is unfortunate. I have dropped out of college. I work maybe one/two days a week to keep things afloat. My mother and family think this is psychological, and basically think i'm a waste, which has become a reality at this stage. I have no idea what to do. I have a supportive girlfriend (and even family, considering how long i've been at home for.). I have lots to be greatful for, I am a positive person. I am trying to keep my **** together, and I often do, but i'm losing my patience with myself and with this undiagnosed illness that's affecting and seemingly destroying my whole body, I feel like ****ing **** every day. Where do I go now?

EDIT: Also mildly elevated bilirubin, low vitamin D.

Water John

Have a look at ME to see does it match your symptoms.
Not recognised or accepted until fairly recently. Had an acquaintance who had it.

javasacrilige

I'll look, thanks a million.

twill

Chest pain mimicking a heart attack but with no heart issues present can sometimes be found with fibromyalgia. ME and Fibro - both similar, but generally more pain with Fibro, and the pain is more specific, such as the chest pain - can both be precipitated by a viral infection. I would see if you can get a referral to a consultant rheumatologist for a possible diagnosis. I have heard the consultant in the Mater (if you are sent there) tells people to exercise, which is the least relevant advice possible, but if you can get referred to the pain clinic that would be the main thing. In the meantime, maybe look up pacing as a coping technique.

Tropheus

Take a look at Lyme disease again.  Testing available in Ireland is notoriously inaccurate. This Irish group on Facebook is worth a visit.

https://www.facebook.com/groups/44960753282/

javasacrilige

Have been referred on to rheumatology! Will take a while for the consultation. Thanks for the advice, all is highly appreciated.

failinis

twill wrote: »

Chest pain mimicking a heart attack but with no heart issues present can sometimes be found with fibromyalgia. ME and Fibro - both similar, but generally more pain with Fibro, and the pain is more specific, such as the chest pain - can both be precipitated by a viral infection. I would see if you can get a referral to a consultant rheumatologist for a possible diagnosis. I have heard the consultant in the Mater (if you are sent there) tells people to exercise, which is the least relevant advice possible, but if you can get referred to the pain clinic that would be the main thing. In the meantime, maybe look up pacing as a coping technique.

I had severe heart pain for most of my life (talking aged 3 to now in my 20s) and was dismissed as it being all in my head.
Collapsed, went to hospital and a doctor said my severe heart pain might be the cartlidge of my breast bone being inflamed, and its known to mimic the pain of heart attacks.
Personally still waiting to see a rheumatologist to get it confirmed but its apparently common with other issues.
I also have very bad pain on my collar bone but apparently its referred pain from previous surgery even though that was years ago.

I think the fact OP you are seeing a rheumologist might help a lot for that issue hopefully.

Sounds like you are going through a hellish time, PM me if you ever need to talk to someone.

javasacrilige

Have been diagnosed in a and e with costichondritis, they said it was related to my joint pain, this inflammation of the ribcage you're talking about. And also episodes of pericarditis, twice over. No follow up on either though, barre referral to rheumatology. I feel like my whole body's in ruins and nobody can find the source of the problem! Same to you failnis. I wish you good health in the future and hope you get your own problems sorted. Thanks for the support.

failinis

javasacrilige wrote: »

Have been diagnosed in a and e with costichondritis, they said it was related to my joint pain, this inflammation of the ribcage you're talking about. And also episodes of pericarditis, twice over. No follow up on either though, barre referral to rheumatology. I feel like my whole body's in ruins and nobody can find the source of the problem! Same to you failnis. I wish you good health in the future and hope you get your own problems sorted. Thanks for the support.

AH yes, costichondritis was the name they said, I just did not remember it right away. Its awful, but there are treatments - just both of us waiting for rheumatology! :rolleyes:
Best of luck to you too.