Chronic pain & conditions support and venting--How are you?

[AmyG]

Sept 4, 2024 19:35:03 GMT -6 Eagles said:

Sept 4, 2024 17:16:11 GMT -6 hawkward said:

Are the ESIs working for you? I’m a big believer in them in stable cases. My guy (coworker and provider) is really careful with imaging and follow ups, but I know not everyone is.

So far, not total relief. I've been battling this all year. It's an extrusion and from what I understand, I'm not a good candidate for surgery yet.

I will qualify this statement with the fact that I understand why doctors have cracked down so hard on opiates, but I've been rationing 10 Vicodin since I was in the ER last December (I still have 5). I'm not at any risk for dependence, I can't take NSAIDs, and I wish I could just have a short script when I'm in a flare and pregabalin/Tylenol isn't touching it.

I got 30 hydrocodone in early January from my pain dr
I take them rarely because they constipated me ao badly even with miralax and stool softeners.
So I have 10 left after 8 mos.
So by the math I'm taking just over 1/2 a pull once a week.

I could in theory get more but they were mighty expensive, $100 for dr visit, plus pee test cost me $120 cause insurance wouldn't cover any of it, and the pills were $15.
So $235 or $7.83 a pill

But gosh some nights I would so want to just not hurt and go to sleep. Some days of no or lower pain. That sounds heaven.
I asked pain dr if I could just get lidocaine injections in my butt every week. Lol

[AmyG]

Sept 4, 2024 14:56:41 GMT -6 hawkward said:

AmyG even if it’s a contract, they’re ON CONTRACT. Raise hell for some follow up care.

I finally on day 15 after many calls got ahold of the risk management nurse who went and tracked down my results

negative for hiv and hepatitis.
They say no need for further testing. Didn't seem to give a care that I waited so long for results. Or that my anxiety was thru the roof.

The letter said their nurse would call me with a day or 3, I had to call them after calling everywhere to find the ph#

letter also said my labs portal would have the results immediately (portal showed them on day 15 even tho the labs were processed within an hour of being drawn)

My primary dr just got the results today to call me 22 days later. They were irate for me.


Test results only went to the hospital brands risk management office.


Dh wants me to talk to malpractice attorney. I don't have any physical harm, my mental state/anxiety only effected.
The anxiety brain keeps worrying over what the heck the anesthesiologist did incorrectly around anesthesia instruments that touch blood while I was spread eagle knocked unconscious. And then overthinking that it was more.

Also dh thinks it would maybe get an attorney to go look further into the other 100+ women's clinic patients that were part of this screw up.

My brain worries over the other women going thru infertility, ivf, cancer and ob procedures and gyn surgeries and how this could have a whole lot of very upset women involved.
Hopefully positive cases are nil. But...

[Eagles]

Sept 12, 2024 23:52:21 GMT -6 AmyG said:

Sept 4, 2024 14:56:41 GMT -6 hawkward said:

AmyG even if it’s a contract, they’re ON CONTRACT. Raise hell for some follow up care.

I finally on day 15 after many calls got ahold of the risk management nurse who went and tracked down my results

negative for hiv and hepatitis.
They say no need for further testing. Didn't seem to give a care that I waited so long for results. Or that my anxiety was thru the roof.

The letter said their nurse would call me, I had to call them after calling everywhere to find the #

letter also said my labs portal would have the results immediately (portal showed them on day 15 even tho the labs were processed within an hour of being drawn)

My primary dr just got the results today to call me 22 days later. They were irate for me.


Test results only webt to the hospital brands risj management office.


Dh wants me to talk to malpractice attorney. I don't have any physical harm, my mental state/anxiety only effected.
The anxiety brain keeps worrying over what the heck the anesthesiologist did incorrectly around anesthesia instruments that touch blood while I was spread eagle knocked unconscious. And then overthinking that it was more.

Also dh thinks it would maybe get an attorney to go look further into the other 100+ women's clinic patients that were part of this screw up.

My brain worries over the other women going thru infertility, ivf, cancer and ob procedures and gyn surgeries and how this could have a whole lot of very upset women involved.
Hopefully positive cases and nil. But...

Can you contact your state attorney general? They might be very interested to hear about this.

[Eagles]

Sept 12, 2024 23:37:09 GMT -6 AmyG said:

Sept 4, 2024 19:35:03 GMT -6 Eagles said:

So far, not total relief. I've been battling this all year. It's an extrusion and from what I understand, I'm not a good candidate for surgery yet.

I will qualify this statement with the fact that I understand why doctors have cracked down so hard on opiates, but I've been rationing 10 Vicodin since I was in the ER last December (I still have 5). I'm not at any risk for dependence, I can't take NSAIDs, and I wish I could just have a short script when I'm in a flare and pregabalin/Tylenol isn't touching it.

I got 30 hydrocodone in early January from my pain dr
I take them rarely because they constipated me ao badly even with miralax and stool softeners.
So I have 10 left after 8 mos.
So by the math I'm taking just over 1/2 a pull once a week.

I could in theory get more but they were mighty expensive, $100 for dr visit, plus pee test cost me $120 cause insurance wouldn't cover any of it, and the pills were $15.
So $235 or $7.83 a pill

But gosh some nights I would so want to just not hurt and go to sleep. Some days of no or lower pain. That sounds heaven.
I asked pain dr if I could just get lidocaine injections in my butt every week. Lol

Do the lidocaine patches help? The rx ones are better but insurance doesn't like to cover them. I got them through my pharmacy for my mom after she had surgery and paid OOP (happy to do it, blessed to have the funds, and lucky to have an independent pharm who takes really great care of me and handled getting her set up as a patient).

Health insurance in this country is criminal.

[AmyG]

Sept 13, 2024 8:53:44 GMT -6 Eagles said:

Sept 12, 2024 23:37:09 GMT -6 AmyG said:

I got 30 hydrocodone in early January from my pain dr
I take them rarely because they constipated me ao badly even with miralax and stool softeners.
So I have 10 left after 8 mos.
So by the math I'm taking just over 1/2 a pull once a week.

I could in theory get more but they were mighty expensive, $100 for dr visit, plus pee test cost me $120 cause insurance wouldn't cover any of it, and the pills were $15.
So $235 or $7.83 a pill

But gosh some nights I would so want to just not hurt and go to sleep. Some days of no or lower pain. That sounds heaven.
I asked pain dr if I could just get lidocaine injections in my butt every week. Lol

Do the lidocaine patches help? The rx ones are better but insurance doesn't like to cover them. I got them through my pharmacy for my mom after she had surgery and paid OOP (happy to do it, blessed to have the funds, and lucky to have an independent pharm who takes really great care of me and handled getting her set up as a patient).

Health insurance in this country is criminal.

The patches don't seem to penetrate deeply enough.
I have an icy hot max roll on that sort of works especially if I add in the high cbd lotion. I kind of get a cooling peppermint numb butt lol
But the pain is close enough to my butt Crack and radiates into pelvic floor so that can result in a bit of a peppermint vag and that's a big no

[Eagles]

Sept 13, 2024 11:58:37 GMT -6 AmyG said:

Sept 13, 2024 8:53:44 GMT -6 Eagles said:

Do the lidocaine patches help? The rx ones are better but insurance doesn't like to cover them. I got them through my pharmacy for my mom after she had surgery and paid OOP (happy to do it, blessed to have the funds, and lucky to have an independent pharm who takes really great care of me and handled getting her set up as a patient).

Health insurance in this country is criminal.

The patches don't seem to penetrate deeply enough.
I have an icy hot max roll on that sort of works especially if I add in the high cbd lotion. I kind of get a cooling peppermint numb butt lol
But the pain is close enough to my butt Crack and radiates into pelvic floor so that can result in a bit of a peppermint vag and that's a big no

Oh yeah I would not want that!

[AmyG]

Well today I have a new plan
But it's Me deciding what to do 1st 2nd 3rd so I feel anxious.

Oct 3 epidural injection lumbar spine from my old psin dr. as numbness and pain path couod be s1 nerve root problem.

Give that time to work as a test for improvement of pain and numbness butt, back of leg, outside of calf and smallest toes.

If still have numbness and /or pain especially pain into pelvic floor then back to piriformis injection.
I'll schedule steroid injections once a month for 3 months.

Hopefully that works cause then if piriformis still causing pain and numbness it's 200 units botox injection
And the last step is surgical release of sciatic nerve from piriformis

[trueblue]

Idk if I am late on the news but Mark Cuban opened an online pharmacy that is selling generics At really reasonable prices direct to consumer (no insurance allowed) through the mail. I am definitely keeping it on my short list of places to price check.


costplusdrugs.com/

[gingy]

I've had some muscle weakness lately, which can be a sign of advancement in one of my AI diseases. I already had an appt with my rheum on the books, and of course he was concerned when I couldn't pass the strength tests. We ran all the labs and fucking everything is normal (for me). I'm just adding prednisone for now, but it's so frustrating to have "good" labs and a broken body.

[Rusty Red]

I started seeing a chiro today because my ortho is too fixated on if the pain is coming from here, the problem must be there too. Hopefully I'm on the right track now to start working on this pain that is progressing down my right side.

[AmyG]

Rusty Red, I was going to ask how you were doing, but only knew your pain was increasing by reading the motivation thread.
I keep hoping that reading the motivation thread will actually motivate me,
but instead of doing that it's like ok, so and so just ran a 10k so I'm all good. lol.

I hope chiro helps you out. I've had it help so damned much at times so I hope it gives you some relief.

[Eagles]

Sept 18, 2024 17:43:22 GMT -6 AmyG said:

Well today I have a new plan
But it's Me deciding what to do 1st 2nd 3rd so I feel anxious.

Oct 3 epidural injection lumbar spine from my old psin dr. as numbness and pain path couod be s1 nerve root problem.

Give that time to work as a test for improvement of pain and numbness butt, back of leg, outside of calf and smallest toes.

If still have numbness and /or pain especially pain into pelvic floor then back to piriformis injection.
I'll schedule steroid injections once a month for 3 months.

Hopefully that works cause then if piriformis still causing pain and numbness it's 200 units botox injection
And the last step is surgical release of sciatic nerve from piriformis

Good luck with the epidural! My advice is to rest and ice for at least 2 days afterwards. I've done it 3x this year and the needle definitely makes the sciatic nerve mad, but resting is key for me.

[AmyG]

Sept 20, 2024 12:55:34 GMT -6 Eagles said:

Sept 18, 2024 17:43:22 GMT -6 AmyG said:

Well today I have a new plan
But it's Me deciding what to do 1st 2nd 3rd so I feel anxious.

Oct 3 epidural injection lumbar spine from my old psin dr. as numbness and pain path couod be s1 nerve root problem.

Give that time to work as a test for improvement of pain and numbness butt, back of leg, outside of calf and smallest toes.

If still have numbness and /or pain especially pain into pelvic floor then back to piriformis injection.
I'll schedule steroid injections once a month for 3 months.

Hopefully that works cause then if piriformis still causing pain and numbness it's 200 units botox injection
And the last step is surgical release of sciatic nerve from piriformis

Good luck with the epidural! My advice is to rest and ice for at least 2 days afterwards. I've done it 3x this year and the needle definitely makes the sciatic nerve mad, but resting is key for me.

Thanks for the advice.
Do you do anesthesia for the epidural?
They've offered it but it will cost me $

[Eagles]

Sept 20, 2024 14:13:09 GMT -6 AmyG said:

Sept 20, 2024 12:55:34 GMT -6 Eagles said:

Good luck with the epidural! My advice is to rest and ice for at least 2 days afterwards. I've done it 3x this year and the needle definitely makes the sciatic nerve mad, but resting is key for me.

Thanks for the advice.
Do you do anesthesia for the epidural?
They've offered it but it will cost me $

No, I take Valium beforehand (I already have a script for it). Can you take anything like that? It's honestly pretty quick! I think it was under 15 minutes this last time. For me, it's uncomfortable but not painful. I just focus on slow, deep breaths.

When I was younger I got anesthesia and honestly, I prefer it without because I'm in and out quicker. I just want to get home to my couch and my ice packs.

[AmyG]

Sept 20, 2024 15:36:47 GMT -6 Eagles said:

Sept 20, 2024 14:13:09 GMT -6 AmyG said:

Thanks for the advice.
Do you do anesthesia for the epidural?
They've offered it but it will cost me $

No, I take Valium beforehand (I already have a script for it). Can you take anything like that? It's honestly pretty quick! I think it was under 15 minutes this last time. For me, it's uncomfortable but not painful. I just focus on slow, deep breaths.

When I was younger I got anesthesia and honestly, I prefer it without because I'm in and out quicker. I just want to get home to my couch and my ice packs.

I have anxiety meds but they only help so much.
I did SI joint injection under fluroscope which took about 10 minutes and I was fine.
so I'm leaning to no anesthesia.
Of course my last experience with an anesthesiologist might be tainting my views.

[hawkward]

Sept 20, 2024 15:57:50 GMT -6 AmyG said:

Sept 20, 2024 15:36:47 GMT -6 Eagles said:

No, I take Valium beforehand (I already have a script for it). Can you take anything like that? It's honestly pretty quick! I think it was under 15 minutes this last time. For me, it's uncomfortable but not painful. I just focus on slow, deep breaths.

When I was younger I got anesthesia and honestly, I prefer it without because I'm in and out quicker. I just want to get home to my couch and my ice packs.

I have anxiety meds but they only help so much.
I did SI joint injection under fluroscope which took about 10 minutes and I was fine.
so I'm leaning to no anesthesia.
Of course my last experience with an anesthesiologist might be tainting my views.

I’d definitely opt for no anesthesia. SI joints and piriformis are the most painful things we do and you already know you can handle those.

[byjove]

After I failed the JAK inhibitor it was on for basically inducing diabetes, my doctor switched me to Orencia infusions. I don't have a specific IBD diagnosis, but my GI is convinced I am dealing with inflammation in my GI tract. I didn't realize that the Orencia was not for IBD (so many of these drugs treat multiple things, it's really unfortunate I failed the JAK, it worked amazingly for me otherwise), and my GI symptoms were progressively getting worse this summer. At the end of August, I started with the worst flare of my life in my hands and my rheum said I had to give the Orencia a little longer, and I'm like if it isn't working and my GI is getting worse, I want to switch. I finally got my GI and rheum to talk, and my GI is strongly pushing Humira, due to it historically working well in people like me. I took Humira briefly 12 years ago and stopped when I got pregnant. I loathed the injections, but it sounds like there is a new formula and it is less painful? I am not sure when I can start it though. I've been on steroids for almost 2 months now, and I caught covid, then rebound covid, and now I have bronchitis and my steroid dose is the highest I've ever been at. My reg doctor made a comment the other day about humira causing problems for people, and I'm now stressed about it. I don't know. I'm rambling. I've been feeling lousy for long enough now that I just want to feel better.

INTERESTINGLY, within 24 hours of starting paxlovid, my hand pain went away (after getting even worse with my covid infection). Which might be a thing? I was googling around and I guess pfizer has actually been asking for people to report that as they are looking to do a study?

tl;dr I've been sick, don't know when I can start my new meds. Really worried for illnesses this winter.

[hawkward]

I’m sorry, byjove. I wish I had advice for you. It just absolutely sucks to have to make trade off choices in healthcare.

[AmyG]

byjove
Sorry about your huge flare
But I guess pavloxid has has a positive side effect for you

Maybe you'd be a candidate for their trial but gosh to something else to add to your plate.

You get the fun of flipping a coin to decide when to start new meds?

And how'd you get drs to talk to each other? I can't even get them to send off am update letter electronically to my primary dr.

[AmyG]

So far the epidural steroid injection in lumbar s1 area I'm not a bit fan. I don't have nerve zips but moving around a lot trying to get my left leg to not feel even more numb than usual. Think restless leg with it being numb
And more pain
I expected increase of pain because every injection I've gotten on my left side seems to have given me increased pain
Wonder what that's called?

[hawkward]

I saw the CV surgeon this afternoon. She thinks I’m a good candidate and cleared me. We’re looking at two-ish weeks hopefully.

[AmyG]

Oct 3, 2024 18:48:01 GMT -6 hawkward said:

I saw the CV surgeon this afternoon. She thinks I’m a good candidate and cleared me. We’re looking at two-ish weeks hopefully.

That's good and FAST
Fingers crossed you get all your insurance authorizations without issue

[Rusty Red]

Small potatoes compared to some, but I've been super disappointed Cymbalta didn't do anything for me. I've been on it long enough now that if it were going to help, it would have.

[byjove]

Oct 3, 2024 18:38:55 GMT -6 AmyG said:

byjove

And how'd you get drs to talk to each other? I can't even get them to send off am update letter electronically to my primary dr.

I don't know, I think I mostly just got lucky that my GI took pity on me and was fed up with the rheums. 

[Eagles]

Oct 3, 2024 18:42:36 GMT -6 AmyG said:

So far the epidural steroid injection in lumbar s1 area I'm not a bit fan. I don't have nerve zips but moving around a lot trying to get my left leg to not feel even more numb than usual. Think restless leg with it being numb
And more pain
I expected increase of pain because every injection I've gotten on my left side seems to have given me increased pain
Wonder what that's called?

How are you feeling today? Is ice helping? I have 5 or 6 gel ice packs in the freezer and I just rotate through them after an injection. I see my spine doc next week to talk about how the most recent one went, not sure if this is the best I'm going to get or not.

[AmyG]

Oct 4, 2024 13:10:58 GMT -6 Eagles said:

Oct 3, 2024 18:42:36 GMT -6 AmyG said:

So far the epidural steroid injection in lumbar s1 area I'm not a bit fan. I don't have nerve zips but moving around a lot trying to get my left leg to not feel even more numb than usual. Think restless leg with it being numb
And more pain
I expected increase of pain because every injection I've gotten on my left side seems to have given me increased pain
Wonder what that's called?

How are you feeling today? Is ice helping? I have 5 or 6 gel ice packs in the freezer and I just rotate through them after an injection. I see my spine doc next week to talk about how the most recent one went, not sure if this is the best I'm going to get or not.

I had 4 heat or freeze gel pads. We blew one up in the micro a while back then there were 3.
1 went missing somewhere in bed or recliner last week. Haven't found it yet.

Now there are 2.
Waiting one freezing and gonna rest on top of it til it melts.

So far nothing but increased pain but I know it may take a bit to see if it helps.

I'm not confident as the pain even down into pelvic floor is also increased and they don't think that's from s1.
Idk tired of guessing
But still playing wackamole with injections.

[Eagles]

Oct 4, 2024 16:13:16 GMT -6 AmyG said:

Oct 4, 2024 13:10:58 GMT -6 Eagles said:

How are you feeling today? Is ice helping? I have 5 or 6 gel ice packs in the freezer and I just rotate through them after an injection. I see my spine doc next week to talk about how the most recent one went, not sure if this is the best I'm going to get or not.

I had 4 heat or freeze gel pads. We blew one up in the micro a while back then there were 3.
1 went missing somewhere in bed or recliner last week. Haven't found it yet.

Now there are 2.
Waiting one freezing and gonna rest on top of it til it melts.

So far nothing but increased pain but I know it may take a bit to see if it helps.

I'm not confident as the pain even down into pelvic floor is also increased and they don't think that's from s1.
Idk tired of guessing
But still playing wackamole with injections.

I can't even imagine. It's like stick one place, pain pops up in another. I will say the pain usually increases in my ass and leg for me for 3-4 days and then settles down. I just tell myself the nerve root is really mad from the poking.

In a pinch, you can do a tube sock filled with rice and stick it in the freezer.

[AmyG]

Oct 4, 2024 17:09:37 GMT -6 Eagles said:

Oct 4, 2024 16:13:16 GMT -6 AmyG said:

I had 4 heat or freeze gel pads. We blew one up in the micro a while back then there were 3.
1 went missing somewhere in bed or recliner last week. Haven't found it yet.

Now there are 2.
Waiting one freezing and gonna rest on top of it til it melts.

So far nothing but increased pain but I know it may take a bit to see if it helps.

I'm not confident as the pain even down into pelvic floor is also increased and they don't think that's from s1.
Idk tired of guessing
But still playing wackamole with injections.

I can't even imagine. It's like stick one place, pain pops up in another. I will say the pain usually increases in my ass and leg for me for 3-4 days and then settles down. I just tell myself the nerve root is really mad from the poking.

In a pinch, you can do a tube sock filled with rice and stick it in the freezer.

I'm just cranky cause the numbness is more and then the pain discomfort from increased numbness.
I'm outa rice. Darn