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He seems to think since I don't wake up stiff & with the aches and pains and that i get them from working throughout the day (I'm a dental assistant and my hands and forearms ache and cramp up every day) its not lupus related. Also the previous time I saw him i had whole body aches that felt that the flu that was already ongoing for about 3 weeks, he said it was probably a virus. Does anyone else have similar pains, or p.i.t.a. rheumy?
@A MyLupusTeam Member I normally go to the same hospital and all of my drs are affiliated with Duke so all of my information is in there and I’ve never had an issue in the past year that is getting treatment (high dose of IV steroid and pain meds; they also order EKG for me since I sometimes have abnormalities, blood work to Check my levels and regular panels). You should NEVER feel as though you should stay home and suffer. I know that I’ve chosen to do so because I hate hospitals but if I truly need to I go. Having a convo with your provider even before you need a visit (like during a follow up) May be a good idea to get a basis for protocol. @A MyLupusTeam Member It must vary by state or region because in both the states I’ve lived in the past five years CT and NC, I do not have to call my provider on the way to the ER...I don’t quite understand the rationale for that? They will take your insurance while you’re in the hospital so there’s no need to call the health insurance. In modern times too, the hospital will run your insurance to see what is covered, if and what your copay for ER visits is, and if there’s a balance you’d like to pay towards. That’s how the hospitals operate where I’m from anyway. Every place is different I’m sure!
@A MyLupusTeam Member, If you go to the hospital for a flare, what do they do to help you? When I have a bad flare, I feel like it is so hopeless, I just stay in bed.
It depends on the flare up. And you do have to call up your Provider on the way to ER, or have someone do it for you, so you don't have to pay it out of your own pocket. That's why you pay health insurance.
If he doesn't listen, find a doc who does! It's your life and you need some help. Don't let him put you off in this way. Stand up to him, tell him you want treatment (not just pain pills, that's not treatment) and see what he does. If he still doesn't listen, find someone who does.
Oh my that is terrible. So sorry you have to suffer through that. I have similar pain, like all of my joints are crumbling and aching. I know it is lupus related and my rheumatologist has told me several times I don't fit the criteria for fibromyalgia, neither do my symptoms (I've also tried more than a few of the medications that are supposed to help the symptoms and pain associated with fibromyalgia without any improvement). The pain I feel (which you seem to describe as well?) isn't a nerve pain, but I deep muscular and almost surface like joint pain. Have you ever tried speaking to even your primary about your pain? He may be able to prescribe you something to try OR give you a referral to a pain management doctor who will know better. My rheumatologist actually is not the one who does anything with my pain. Even during terrible flare ups and I get out of the hospital, he refuses to give me a prednisone taper every time, I get them from my pain management dr or my primary. It really takes a team and you need to be your own advocate because sorry to say...many doctors have their heads in the clouds and some up their ulu know what! Lastly, my pain like that isn't always in the AM though sometimes is, it also comes along with low grade fever, fatigue, sometimes sores OR rash, worsening of my chronic migraines, and my light sensitivity gets worse so I bulk up on sunscreen and cover up or try to stay in. Do you have anymore symptoms as well? All the best 💗😃
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