I went yesterday because I was feeling having trouble staying awake the last two days (yes more than usual). I was worried I had caught something or something was wrong again with my thyroid so my husband took me to the emergency.
The doctor had no idea about anything, he asked me “so you have chronic fatigue syndrome?” Had no idea that biologics exist. Luckily they did a bunch of tests and sure enough my thyroid is acting up again, but the doc wouldn’t give me anything to cope because he thinks “thyroid medication is given out too much” .
He gave me my test results to give my doc, and included were all the other tests I’ve had done at that hospital. Apparently an EKG I had done there earlier that year was abnormal and no one had ever mentioned it to me. That kind of grinds my gears. It could’ve been an error, but not to even tell me.
I’m never going back to the er unless I absolutely have to, and wheeled in on a gurney!
–I know this post isn’t entirely PsA related but, if anyone has some pointers I’d be forever grateful!!–
Yep - I’m in the same boat as Sybil. For what you describe, it would likely be a 12 hour wait or longer at the public ER near us, so I must admit I’ve only been twice in my life, once when I crushed my finger (nerves really do grow back - it took about two years) and once when I thought I was dying in the next 20 mins.
I have the same arrangement as Sybil - is it worth asking your GP? Or do you find you need urgent assessment through tests you can’t get done quickly via the GP? One thing if you have to go to the ER, is to talk to your husband now, and ask him to remind you to get copies of all tests and assessments, then make a follow up appointment with your GP to discuss what they mean. (I suggest asking your husband because I know that if I’ve gone to the ER for treatment, I won’t have the presence of mind to remember to ask)
Sorry you've been suffering. But woah--doc had no idea biologics existed. RUN AWAY. RUN AWAY. RUN AWAY.
As Jen and Sybil say, best course is prevention. You need all your docs for all your ailments on board with what's going on. Sounds like a visit to your GP/PCP is in order to look into your thyroid stuff.
For PSA, after having terrible bouts with sleeplessnes and flares that would start on the weekend when no one is in the doctor's office I finally got an appointment between my regular ones and asked for a consult on "what to do if..." The doctor was REALLY responsive to this meeting and gave me the low-down on shat to do for flares, for sleeplessness, for unremitting pain, you know--the usual stuff. So now I have my "rheumy-approved emergency measures kit" in the bathroom cabinet. It contains, sleeping pills, steroids, a round of the only antibiotics he will prescribe for me, strong fast-acting pain killers, and strong slow-release pain meds. Something for everything when anything goes awry!
Oh yes, Meg, yet more proof that going to ER for anything related to rheumatology is (going polite now) most likely going to be unproductive. In defence of the ER doc, though, he may not have known about biologics, but I’m sure he was right up to date on the latest treatment for cardiac arrest! And I’ll bet he can stitch up skin like nobody’s business. LOL
All the more reason to have your own emergency-clinic-in-a-box like Jane has!
There is not an ER Doc anywhere in the world who will TOUCH endocrine issues unless the patient is on their death bed and then it will be a shot of adrenaline. They can cause way more trouble than solve. They may contact the patients doc for advise. More likley they will determine if you are going to live until your doc is in his office and if so send you on the way with a six grand bill. Be sure and read your insurance policy if in the US, your co-pay could be way different for a non emergent ER visit. 50% or more.
The bottom line is unless you have lot of extra money, the bone is sticking out, the blood is gushing, or you have chest pain unless you have called your PCP and been sent to the ER (have him call ahead) don't go.
Janeatiu: hate to go all grammar-teacher on you, but in "gave me the low-down on shat to do" that is the past-tense verb form of the word. Change the "a" to an "i" and we're in business!
Meg, I wish there was a good answer. Having raised a pack of boys, been there, done that. Urgent care centers are usually more humane, but are often staffed by PAs or NPs instead of MDs, if that matters to you. Massive trauma, heart attack, stroke, the ER may be the only option. Otherwise, cowboy up and try to get in with your regular people.
I used to be a nurse... back when dinosaurs roamed the earth... so I can confirm that ED residents/ registrars don't really know much of anything... that's why they are there... to learn about real life and real people!! They often work 48 hour shifts and are used to most of the patients being drug addicts/ drunk/ having mental health issues... so they need a while to switch gears when someone who has an ongoing condition comes in.
I would suggest that you get your Rheumy/ GP/ other specialist to write a letter outlining your condition/ symptoms/ medications and then make lots of copies... make sure you leave couple in the car glovebox and one in your purse/ wallet/ "Going to hospital Emergency Bag" ( which I keep ready to go with the aforementioned letter, a day's worth of medication, emergency pyjamas, electric heat pad, spare phone charger cord and a paperback novel!!) You might find it useful to attach a copy of the prescriber information out of the medication boxes to your "hospital copy" so that the young and often overtired and overworked ED doctors can get a handle on what's happening!
Once your "Going to hospital emergency bag" is set up, you can leave it in the hall closet/ trunk of your car... and let other people know where it is, so they can easily find it and bring it to the hospital for you if need be!
Don't forget to ask your doctor to update your letter every couple of years or when you change medications :)
I also have to endorse Jane's "rheumy-approved emergency measures kit" idea. I also have all that stuff - because I travel to lots of places where a clean needle is not possible to find, let alone a doctor who's heard of biologics - as part of my travel kit, hence sitting in the cupboard.
I think ER docs are there more for trauma, chronic health conditions is not something they have to stay informed about. I have a friend who works in an ER and tells me he wouldn't know what to do with chronic rheumatic conditions.
Ideas for fatigue: 1. Record yourself sleeping and find out if you have sleep apnea (you stop breathing for a long moment at a time). If you do, you would want to perform a sleep study to verify and get a CPAP machine which are wonderful and have come down in price since their introduction.
2. The drug Provigil if you can get it, but with its scary side effects I'd try to avoid it for a while if I could. I've heard Adderall used off label might be safer nowadays. Any arthritis book or magazine will caution you that you don't want to develop dependency on these kinds of drugs, so you will try to only use it as needed. I've seen several people saying Provigil was given in 200mg pills but their doctors told them to cut them and only take a quarter, which probably reduced their risk of side effects too.
These are great ideas. I made a PsA emergency flow sheet, if anyone is interested,I can post it here. You can change the instructions to meet your specific needs. Anyway, it tells me what to do when I feel terrible. I have also have emergency meds that I use in these cases.
The ERs are pretty terrible for people with chronic illnesses. The docs just aren’t equipped to deal with us for anything more than making sure our labs aren’t out of whack, pain control, and poor administration of steroid tapers. We really have to keep me out of the ER unless I think I’m dying. They just can’t do much to make us better. It stinks, but we really have to rely on our team of docs instead.
I went to the ER before my diagnoses. I thought it might be the best way to see what every type of doctor I needed. I was wrong. The only wonderful and painful thing they did for me was give me a shot of cortisone. The problem was I was still undiagnosed. It really didn't help. They thought my crooked finger was broken lol