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Did anyone have problems getting a diagnosis.

Jul 19, 2017 2:55 PM

Hi, new here and wondering if anyone else has had the same thing.

I'm in the UK, so I get access to the NHS, that I usually sing about how wonderful it is (I have Brittle Asthma, so they've saved my life a lot). A few years ago after a misdiagnosis I became seriously sick and had major surgery. Fast forward a couple of years. And pain. Excruciating abdominal pain. Far worse than childbirth. (And I've done that twice, once without so much as paracetamol). It's been over a year, and they've done some scans and some bloods and they just don't care what it is. two Emergency admissions were pancreatitis, but the rest of the time there's 'no reason' they can find for the pain. They've ruled out the blindingly obvious and then stopped. And it's crippling. Now, when it gets so bad I'm taken to hospital, they throw painkillers at me and send me home! I don't want painkillers, I want them to fix it. I've begged to see my old surgeon to see if he can shine a light but waiting. Waiting for pain team. Waiting on everything. Still. Their latest guess is one of my breathing meds causes the pain - that means it isn't their problem.

Anyone know how to get them to keep looking? If they don't know what the cause of the pain is how can they resign me to buckets of painkillers?

My best mate wants to take a loan out to take me abroad to a specialist, it's got that bad

Any help greatly appreciated x

Jul 19, 2017 4:12 PM

Hi. Im in the US. And as for getting a diagnosis, I've been at this pain management and (diagnosis syndrome) i like to call it, for 20 years. The dr's don't really know what's going on or how to fix what they screwed up. So im on pain meds that don't really take care of the pain. They just take the edge off. And I have no belief that they will ever actually decide whats wrong. I'm to the point where filing a law suit is the only way to force them to even try. But, who can afford that. So I just go on taking my meds and do whatever I want. Although ill pay for everything tat i do. Oh well life goes on.

Jul 19, 2017 6:30 PM

I'm in the same boat guys...one thing though I don't even have the pain killers I guess be great for small blessings.. the drs in the US are all in a flutter about prescribimg anything...they just leave us suffering

Jul 19, 2017 9:54 PM

Yes. I live in Canada, so we have a similar health care system to the UK. While I'm thankful for not having to pay for healthcare, I've been stuck in an age-type diagnosis problem. I've been experiencing chronic pain since age 9, but because doctors never believed kids can have chronic pain, nobody bothered to look into it. Then last year, at age 18, I finally was seen by an adult rheumatologist who couldn't figure out my problem because he was using the adult criteria and diagnoses. Had he also been looking for pediatric conditions, I may have got a diagnosis.

Jul 20, 2017 11:10 AM

Hi I'm in the U.K I have found it so hard to get my diagnosis it took 6 years for one of my diagnoses and 4 for another, My only advice is keep pushing don't give up keep going to the doctors and ask for to be referred to a stomach doctor, I would also put a complaint in saying how you don't think they have treated you right ect.. I really hope you get the help you need.

Jul 20, 2017 12:54 PM

For some reason they keep referring me to surgeons rather than a gastroenterologist which is confusing me.

I don't understand why they are so weird about painkillers. Some doctors won't give them out for anything, some throw them out to make you go away. It's hard to find a good doctor :(

Jul 20, 2017 1:00 PM

It's really hard to find a good doctor, I would go to your gp and ask them for a referral to a gastroenterologist not a surgeon

Jul 20, 2017 1:11 PM

See my usual GP next week and going to ask him. Not happy with the hospital :(
Did you find that once you saw the 'right' doctor things fell into place?

Jul 20, 2017 1:42 PM

Hi Taze, I was lucky enough that my first diagnosis was diagnosed pretty quickly....from first onset of accute pain in the left side of my face to diagnosis was about 4 months but in that 4 months my GP was chucking pain killers at me, none of which helped in fact they made me worse to the point I couldn't function. I had an ambulance out to me at least once a week where I was taken to A&E each time then I was finally admitted they were debating cancer and done soo many tests and an MRI which showed there was no cancer, thank heavens, but also showed that there was nothing touching the left side trigeminal nerve so they gave me a diagnosis of stress induced trigeminal neuralgia (I had been to court to get a non-molestation order against my ex-husband). But it took another 2 years to be DX with fibromyalgia and even then my GP was dead againse having the diagnosis but she had to refer me to a rheumatologist in the end because I was showing inflammation that was RA related. The rheumatologist diagnosed me with fibromyalgia in 5 minutes then decided that I have to come off morphine because he doesn't like it, I don't need it and it's bad for me!!!! (Withdrawal is the main reason I've not been on here for a while).

Is there a particular doctor in your surgery that is more empathic than the others? Could you go in and ask to be referred to gastroenterology? Maybe if you research the gastroenterologists in your area in the different hospitals near and go in with a name and say you want to be referred to that particular consultant they might refer to them? I know the NHS has its faults but the only thing you can do is keep going back to your GP and keep asking to be referred.

Are they refering you to surgeons because of the surgery you had?
I would definitely go in and say who you want to be referred to, keep pushing them if they won't maybe you need to change doctor surgeries and find a different surgery in your area (but if your area is anything like mine all of them are full and can't take on any new patients).

You should also be keeping a diary of everything, whether you do the pain diary on here or another app or even a written one will help. Make sure you put where the pain is, how bad it is, meds and supplements you take and what you've done i.e if you've had to go shopping or your muscle pain was so bad that you spent an hour in a hot bath with Epsom bath salts.

If you need anything just give me a shout.

Sending you positive vibes and warm healing hugs xx

Jul 20, 2017 1:43 PM

Sort of my conditions don't have a cure but once I found a good doc I got all the tests ect I need. I think your gp is the best option. Feel free to personal message me if you need any help.

Jul 20, 2017 5:36 PM

Also just thinking if you can afford it you could go private and pay to see a gastroenterologist if you don't want to wait.

Jul 20, 2017 11:26 PM

I'm in the US. It took them 10 years to diagnose my bipolar then another few years to get me on the right meds.

Jul 20, 2017 11:28 PM

@taze welcome to our group 🤗🤗

Jul 21, 2017 3:18 AM

I'm also in the UK, you really need to push your GP to refer to the department you need and you should have a choice for which hospital you want to go to so before you see your GP next week maybe look at the hospital's around your area to see which will be the best for you x

Jul 21, 2017 11:53 AM

So westerngirl how many different drugs did it take to get you leveled out

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