hawkward
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Post by hawkward on Jan 7, 2024 10:53:11 GMT -6
So how bout you guys here in this chronic pain and chronic conditions thread. What's your goals for your health stuffs this year? What do you want to do the same or different in 2024? I’m caught somewhere between hope and acceptance. My goal is to maintain the function that I have and to accept that this may be what my life looks like now. It’s easy to fall into depression with chronic pain.
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AmyG
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Post by AmyG on Jan 7, 2024 20:42:24 GMT -6
So how bout you guys here in this chronic pain and chronic conditions thread. What's your goals for your health stuffs this year? What do you want to do the same or different in 2024? I’m caught somewhere between hope and acceptance. My goal is to maintain the function that I have and to accept that this may be what my life looks like now. It’s easy to fall into depression with chronic pain. maintaining where you are sounds good. Coming to terms with not actually getting better is very difficult. I know you know it's OK to not be one of those people who just sighs for a moment and never seems to miss a beat or feel the arg about it all. Accepting the chronic part of it all and the new normal is hard.
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AmyG
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Post by AmyG on Jan 8, 2024 13:39:02 GMT -6
At end of year I always try to balance out my medical stuffs. Recent years its been warterly or monthly.
Have sort of figured out part of the medical what's owed what's paid.
But pretty sure the pt visit paid out of pocket was credited to my piriformis injection appt.
part of that injection appt 11/2 was denied because insurance said it wasn't pre-approved. So there was a $160 denied fee. That I probably could be billed for.
Now I'd expect the billing dept of dr office to check if there is a different code that insurance would pay out towards.
But they sshouldn't change the date of procedure from 11/2 to 12/12. I didn't have an appt that day. So it looks fishy but then I'm billed for $83 not $160.
I have to balance all my payments to that office (dr and pt combined) as vest I can and then call them. I don't wanna
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Post by Kenny1980 on Jan 10, 2024 19:16:59 GMT -6
I've been on a wild ride since October. My new rheumatologist suspected that I really didn't have seronegative rheumatoid arthritis and actually had a rare genetic disorder. After our initial meeting he noticed my alkaline phosphatase (ALP) was extremely low. He said it could be a indicator of celiac with the inflammation I was having. So I did the testing for that and it came back negative. About a week later he asked that I get genetic testing for hypophosphatasia. I started to read about it and the more I read the more I was convinced I had this. It took awhile to get in with the right provider who was very knowledgeable about this genetic disorder and do the genetic testing. But the results did come back positive that I do have this. It really validates that the chronic pain I have is real and there is a reason for it. Unfortunately there is no cure and only one very expensive medication that may or may not reduce the pain. But at least now I can continue to work with pain management to manage my symptoms.
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Post by peachesncream on Jan 10, 2024 21:04:59 GMT -6
I've been on a wild ride since October. My new rheumatologist suspected that I really didn't have seronegative rheumatoid arthritis and actually had a rare genetic disorder. After our initial meeting he noticed my alkaline phosphatase (ALP) was extremely low. He said it could be a indicator of celiac with the inflammation I was having. So I did the testing for that and it came back negative. About a week later he asked that I get genetic testing for hypophosphatasia. I started to read about it and the more I read the more I was convinced I had this. It took awhile to get in with the right provider who was very knowledgeable about this genetic disorder and do the genetic testing. But the results did come back positive that I do have this. It really validates that the chronic pain I have is real and there is a reason for it. Unfortunately there is no cure and only one very expensive medication that may or may not reduce the pain. But at least now I can continue to work with pain management to manage my symptoms. Did they consider Wilson's disease? I work in hepatology and I know low alk phos can signal liver or bone involvement, it's usually good to rule one out before definitively diagnosing the other (is my understanding from what our very patient NP has tried to oversimplify for the sake of my understanding).
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Post by Kenny1980 on Jan 11, 2024 8:49:01 GMT -6
I've been on a wild ride since October. My new rheumatologist suspected that I really didn't have seronegative rheumatoid arthritis and actually had a rare genetic disorder. After our initial meeting he noticed my alkaline phosphatase (ALP) was extremely low. He said it could be a indicator of celiac with the inflammation I was having. So I did the testing for that and it came back negative. About a week later he asked that I get genetic testing for hypophosphatasia. I started to read about it and the more I read the more I was convinced I had this. It took awhile to get in with the right provider who was very knowledgeable about this genetic disorder and do the genetic testing. But the results did come back positive that I do have this. It really validates that the chronic pain I have is real and there is a reason for it. Unfortunately there is no cure and only one very expensive medication that may or may not reduce the pain. But at least now I can continue to work with pain management to manage my symptoms. Did they consider Wilson's disease? I work in hepatology and I know low alk phos can signal liver or bone involvement, it's usually good to rule one out before definitively diagnosing the other (is my understanding from what our very patient NP has tried to oversimplify for the sake of my understanding). Yes, we ruled out those other things that could cause low ALP and the genetic testing along with a few other labs confirmed hypophosphatasia.
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byjove
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Post by byjove on Jan 11, 2024 9:27:11 GMT -6
@kenny1908 what a journey! Kudos to everyone on your medical team (including you) for pushing until the correct diagnosis was found.
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AmyG
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Post by AmyG on Jan 16, 2024 14:23:53 GMT -6
Kenny1980, Glad you may have drilled down to get to the proper diagnosis. Hope it gives you a direction for treatments to make you feel so much better. Chronic pain--sigh. It's demoralizing if anyone even slightly suggests it's in your head and not real. And now you have proof that it's not all in your head. Kudos and also I'm sorry.
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AmyG
Ruby
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Post by AmyG on Jan 16, 2024 14:30:38 GMT -6
So last week my pain clinic np pushed for me to get an si joint injection. That's scheduled for 1/31. Scheduler asked if I wanted anesthesia and I'm like I've neve had this procedure done, so I don't know!? I have to call and nag them to get the preauth for insurance and get some kind of estimate of what this might cost me.
Meanwhile pelvic floor specialist office procedure scheduler finally got back to me. They've been without a scheduler for months as the other person unexpectedly quit. Doesn't explain it but also does. Also doc only does pelvic floor injections one day a month
I'm scheduled for pelvic floor injections of botox on March 1st. they'll run it thru insurance to see what they will cover and give me an estimate when we get closer and if it's going to cost more than I can bear (remember 1st quote was 3k) they will get insurance to approve pelvic floor trigger point injections which might help.
I have a message to pelvic doc to see if si joint injection should be postponed until after march 1st pelvic floor injection
Either way Im over here trying to figure out with my primary how much/what kind of anxiety meds will help me not fall apart/freak out over not only the wait but the dealing with Dr phone calls and insurance and and and
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AmyG
Ruby
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Post by AmyG on Jan 16, 2024 14:34:51 GMT -6
Oh and my ortho doc sent me an invite to use a recover app to track my pain levels and pt exercises. so every day you are supposed to click your pain level, and they can send videos of your exercises.
a month later they bill insurance for "monitoring" and I owe $83!! every month I use it. Even though the app doesn't work so well on my phone (hangs up, black screens) and it says when I would click my pain level--call the office if your pain is out of control because this app is not regularly monitored....
I deleted the app and complained to billing office and office manager. they say that the info that they would bill insurance is right there in the very long terms of use that you scroll thru so many screens and mostly do not read. I suggested the billing insurance and you may owe a copay or coinsurance fee should be in the invite email from the doc.
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Post by kittyriot on Jan 16, 2024 15:20:06 GMT -6
I am completely flat on my back. Had to have my husband help me pee (always a fun exercise of marital love).
Obviously I must have been well out of an alignment without realizing it, because I did it by standing up from my office chair.
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AmyG
Ruby
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Post by AmyG on Jan 16, 2024 15:22:20 GMT -6
kittyriot, ouch. hope you can get some help for that, aside from dh peeing help
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Post by Kenny1980 on Jan 16, 2024 15:40:59 GMT -6
So last week my pain clinic np pushed for me to get an si joint injection. That's scheduled for 1/31. Scheduler asked if I wanted anesthesia and I'm like I've neve had this procedure done, so I don't know!? I have to call and nag them to get the preauth for insurance and get some kind of estimate of what this might cost me. Meanwhile pelvic floor specialist office procedure scheduler finally got back to me. They've been without a scheduler for months as the other person unexpectedly quit. Doesn't explain it but also does. Also doc only does pelvic floor injections one day a month I'm scheduled for pelvic floor injections of botox on March 1st. they'll run it thru insurance to see what they will cover and give me an estimate when we get closer and if it's going to cost more than I can bear (remember 1st quote was 3k) they will get insurance to approve pelvic floor trigger point injections which might help. I have a message to pelvic doc to see if si joint injection should be postponed until after march 1st pelvic floor injection Either way Im over here trying to figure out with my primary how much/what kind of anxiety meds will help me not fall apart/freak out over not only the wait but the dealing with Dr phone calls and insurance and and and I just got bilateral SI joint injections. I did without anesthesia, it was super fast. Like less than 5 minutes total. They numbed the area and it was just weird pressure as they injectioned the steroid medication. I think you can go without anesthesia.
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hawkward
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Post by hawkward on Jan 16, 2024 18:58:05 GMT -6
AmyG I assist my pain guy with injections several times a month. He and I both did injections without any “extra” meds to see how it felt (not even lidocaine). It wasn’t fun but it was tolerable. With lidocaine, it’s just annoying. He also recommends NOT doing any sort of steroid injection under anesthesia because if you feel it “zing” it’s a good indication we’re working in the right area.
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AmyG
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Post by AmyG on Jan 23, 2024 11:27:33 GMT -6
Pain clinic hasn't gotten back to me about cost estimate for si joint injection. I'll call one more time and then I'll have to cancel if I don't know what to expect for cost Not even a ballpark number.
Once I scheduled si inj in left side then si joint pain mostly staying away on left side and hurting on right side.
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Post by flymetothemoon on Jan 23, 2024 20:08:04 GMT -6
Pain clinic hasn't gotten back to me about cost estimate for si joint injection. I'll call one more time and then I'll have to cancel if I don't know what to expect for cost Not even a ballpark number. Once I scheduled si inj in left side then si joint pain mostly staying away on left side and hurting on right side. If PRP, mine in 2017 was 1K for both SI joints and ligaments, not covered by insurance. If Prolotherapy, 450 covered 9 injection sites consisting of 3 syringes.
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Post by flymetothemoon on Jan 23, 2024 20:10:50 GMT -6
Well, it's official - I have 5 subvariants of EDS and dysautonomia. Tomorrow morning I see the rheum and we see if the bloodwork has answers on the autoimmune front. We highly suspect there is also something autoimmune at play. Meanwhile, work has been running at flat out emergency levels since 12/28. My only time off has been for medical appointments and 3-6 hours of sleep a night. I'm ready to drop.
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hawkward
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Post by hawkward on Jan 25, 2024 11:10:02 GMT -6
I just had another nerve ablation. I have numb leg from it which sucks, but at least we know we’re in the right spot.
I’m going to try Lyrica to see if that helps with the nerve pain. My pain guy thinks it will be a big help. He has a similar spinal defect and takes it too.
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AmyG
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Post by AmyG on Jan 25, 2024 11:32:48 GMT -6
@ hawkward when I switched from gabapentin to pregabalin it was because a low dose didnt help the nerve pain but a higher dose of gabapentin made me very dizzy.
I was worries that the pregabalin would do the same but so far a low dose seems to work. I can feel sometimes a slight dizziness I'd I turn my head too fast soon after taking it but that feeling passes.
Hope you have good luck with it too. My insurance wanted me to pay $50 a month for it. Good rx wasn't any better but singlecare I could get it for $15 a month.
I had never actually heard of single care. The frys/kroger pharmacist just put it in for me. Cvs pharmacist was too busy to try to help. We are express scripts this year and it's 1.67 one of my cheapest drugs lol
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AmyG
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Post by AmyG on Jan 25, 2024 11:33:57 GMT -6
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hawkward
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Post by hawkward on Jan 28, 2024 11:19:01 GMT -6
Today is my third day with Lyrica, first with two doses a day (before I was just taking it at night). I feel a bit spacey but awesome.
We did the RFA a bit differently this time and it seems to be working better. I haven’t needed anything extra for pain since Thursday, not even Tylenol.
That numbed leg was insane though. I didn’t get feeling back in it until midnight after having it done. I had to use a cane to walk for a while. It was so weird.
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AmyG
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Post by AmyG on Jan 28, 2024 11:29:43 GMT -6
Today is my third day with Lyrica, first with two doses a day (before I was just taking it at night). I feel a bit spacey but awesome. We did the RFA a bit differently this time and it seems to be working better. I haven’t needed anything extra for pain since Thursday, not even Tylenol. That numbed leg was insane though. I didn’t get feeling back in it until midnight after having it done. I had to use a cane to walk for a while. It was so weird. The numb leg after my piriformis shots was like that. Freaky. Bit I had no pain for days. So I'd just wish for a lidocaine shot in the butt every once in a while and skip the steroid shot part of it just to get no pain for days. Hope Lyrica works well for you. I'm on what's still a low dose 50mg 3x day but it seems to do the job way better for me than 300mg of gabapentin
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Post by hellosweetie on Jan 28, 2024 11:51:12 GMT -6
I hope it's okay that I join. I've had a very difficult six months and I'm growing more and more concerned. Try to keep it short but you know me.
TLDR I've been sick a lot lately and I'm tired and scared.
In July I broke my toe. Two weeks later I was in urgent care with a very bad infection, fever, completely dehydrated. I was sick for a while recovering.
In september I had intense lower abdominal pain and severe nausea and couldn't keep anything down and went to urgent care. Kidney stones, not my first one.
In October I was sick again, with a persistent cough. After four weeks (I know, but I did t really have other symptoms) I fainted during a coughing fit and went immediately to urgent care where I was diagnosed with pneumonia.
In the meantime I had repeat visits for the stone and ultimately it was decided I was a candidate for laser lithotripsy to remove it as it was blocking and causing pretty bad swelling of my kidney. Another stone broke free due to that and joined its sibling in my ureter.
The procedure was scheduled for December and I decided to take leave from work to try and recover as best I could from pneumonia before then. I think I had 4-5 additional urgent care/er visits during this time for kidney pain and uti as directed by my dr. The stent was very irritating and I also had a severe yeast infection during this time due to all the abx I've been on.
January comes and I have the stent removed. Three days later I get a migraine so severe it lasts three days and I'm physically miserable all over. My partner encouraged me to go be seen but I thought it was just a migraine. Day four I was feeling okay so I went to get my nails done and fainted in the chair. They called 911, the paramedics were unable to get a BP reading because it was low and sent me to the ER. I was admitted that evening with a wbc of 23 or so. I stayed one night and was discharged without a note for work, with an active fever. Cool. She said basically there weren't other signs of infection and I'd had abx and fluid, I was severely dehydrated, it was probably related to the stent removal and bye.
That was three weeks ago and I've had three migraines this week alone. They originally were years apart, then couple a year maybe and in the last five have been irregular but still more frequent. I saw my pcp yesterday to follow up and he ran blood count and metabolic panel as well as tsh and referred me to a neurologist for the migraines.
I'm always in pain, my head hurts most days, I'm chronically fatigued, and now when I stand up I sometimes get light headed but not immediately when standing. like today I went to the bathroom and then was talking to dd and started feeling it and the blood rushing in my ears and had to sit down and immediately got a migraine aura. Monday same thing and I think Wednesday as well but I only noticed the pattern today.
I don't know what is important details and what's coincidence and what to ask for and how to advocate well for myself.
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AmyG
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Post by AmyG on Jan 28, 2024 13:00:49 GMT -6
hellosweetie, that's a lot going on. I'd probably talk to primary doc again about separating these thngs out to touch base with a specialist for the different things going on. Definitely a neuro for the migraines. passing out did doc check to see if your blood pressure is going low when you stand up fast?
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hawkward
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Post by hawkward on Jan 28, 2024 13:19:36 GMT -6
My surgical speciality is urology, hellosweetie. I assist with many many uro procedures in a week, often stents and lithotrispy. I absolutely would not accept that as an answer for the fainting, etc. I’m really sorry for what you’re going through.
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Post by kittyriot on Jan 28, 2024 17:05:07 GMT -6
hellosweetie that’s awful, I’m sorry you’ve that much on your plate medically! With the fainting and getting dizzy standing up, I’d do some reading on POTS, it could a part of what’s going on. It’s a comorbidity for my diagnosis’ and I think I have it. But I don’t want to sound like too much at my doctors office.
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AmyG
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Post by AmyG on Jan 30, 2024 17:25:42 GMT -6
Pain clinic hasn't gotten back to me about cost estimate for si joint injection. I'll call one more time and then I'll have to cancel if I don't know what to expect for cost Not even a ballpark number. Once I scheduled si inj in left side then si joint pain mostly staying away on left side and hurting on right side. supposed to have inj in si joint weds dr office called that we have to reschedule because insurance hasn't approved it yet They sent in more dr visit notes to see if that's enough to get it approved But the dealio is that the pain dr where this is at, we've barely talked about si joint just that she suspected it as an issue. with PT I have been working on the support muscles for si joint but pain dr clinic doesn't have pt notes because idk why if only the different places used the same portal, but there's at least 3 different ones it's very arg on my part.
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Post by hellosweetie on Jan 30, 2024 18:01:49 GMT -6
My surgical speciality is urology, hellosweetie. I assist with many many uro procedures in a week, often stents and lithotrispy. I absolutely would not accept that as an answer for the fainting, etc. I’m really sorry for what you’re going through. I am very prone to urinary infections and have been battling them my whole life. It's very probable that the removal was responsible for triggering or aggravating an infection for me. The fainting was because I was dehydrated and walking around close to septic they said.
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Post by hellosweetie on Jan 30, 2024 18:31:20 GMT -6
hellosweetie, that's a lot going on. I'd probably talk to primary doc again about separating these thngs out to touch base with a specialist for the different things going on. Definitely a neuro for the migraines. passing out did doc check to see if your blood pressure is going low when you stand up fast? they did the postural bp checks a couple times in the last er admission.
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Post by hellosweetie on Jan 30, 2024 18:32:54 GMT -6
hellosweetie that’s awful, I’m sorry you’ve that much on your plate medically! With the fainting and getting dizzy standing up, I’d do some reading on POTS, it could a part of what’s going on. It’s a comorbidity for my diagnosis’ and I think I have it. But I don’t want to sound like too much at my doctors office. that's interesting because I do have some more symptoms... maybe I'll ask my doctor about that. The follow up bloodwork only showed an elevated ALT, I think 67? Eta yes and his only comment was to repeat in 3-6 months
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