Chronic conditions/pain support and venting thread

[AmyG]

May 30, 2024 20:04:36 GMT -6 Wtfshouldmynamebe said:

AmyG I have been on trazadone for years with good luck. The key is making sure you go to bed immediately after taking it. You also need a good sleep environment.

Thanks for the suggestion for a different sleep med.
Trazadone I used for several months. Until If wake in night I'd not be able to go back to sleep. And also started waking up with raging headache each morning that would stick around for hours

[byjove]

hawkward, thank you!

[hawkward]

May 30, 2024 19:49:17 GMT -6 AmyG said:

hawkward glad to see I guessed right tagging you in here.
How are you and yours?

Hey! I’m around, just… quiet. DS2 has been going through some really hard stuff (TW’d at the bottom) that takes up a lot of my mental energy. Plus we’ve been slammed at work. That Iowa tornado that was all over the news last week? It’s about 30 minutes from here, 15 from my hospital, and we took up incident command for medical. It was intense and we’re still dealing with a lot of aftermath.

I was feeling run down and complaining to my friend at work, so she ran an iStat on me, and my hemoglobin was 8. So I had iron infusions to get that back up. That along with an asthma flare (stupid cottonwood trees) and I’m kind of a mess.

That was a lot of whining but overall things are okay.

TW self harm…



DS2 has been self-harming. I found him doing some really dangerous things, so now he’s with me, my mom, or H 24/7. It’s exhausting.

[wedding]

hawkward I’m really sorry to hear about all you are going through. I don’t remember how old your son is but I recently learned my 10yo son has been depressed and has considered suicide. It’s been incredibly hard. He hasn’t self harmed so it is different but I’m sure you and I are feeling a lot of the same anxiety and loss of control. Lots of love to you and your family. I hope this is just a season and it passes soon.

PDQ

[wedding]

Does anyone else wish they could just go to a hospital and be sedated and have every test run on them?

I feel like I have so many issues all the time between my migraines, diabetes, my skin condition, body aches, fatigue, etc. And I never get answers and I feel like no one ever looks at the full picture. What if some of these things are related but no one connects the dots because they are different specialists? I wish I had a a medical advocate or something that could coordinate the doctors to make sure they all understand my full history.

[AmyG]

hawkward,
oh I'd noticed you were quiet but was kinda afraid to ask, figuring if you wanted to talk about shit you would.
tornado crisis and recovery is hard on people, I'm glad your hospital was there to help, but sorry they had to do that. I know that's hard on the health care providers.
I've had my hemoglobin at 8 and below. no wonder you were tired! Hope the iron infusion helps out. Any ideas why it got so low? working yourself to the bone taking care of others, and your dh and not sleeping or eating right will do it, but usually not that low.
I know you are getting your ds all the help you can find. hugs to you and yours.

[AmyG]

Jun 1, 2024 18:32:27 GMT -6 wedding said:

Does anyone else wish they could just go to a hospital and be sedated and have every test run on them?

I feel like I have so many issues all the time between my migraines, diabetes, my skin condition, body aches, fatigue, etc. And I never get answers and I feel like no one ever looks at the full picture. What if some of these things are related but no one connects the dots because they are different specialists? I wish I had a a medical advocate or something that could coordinate the doctors to make sure they all understand my full history.

YES! Sorry you feel that way.
In my case they are all connected, the knee bone is connected to the thigh bone that hurts down the back of it in hamstring pain, and connected to the hip bone with pain in the butt, sit bone and connected to the pelvic bone with pelvic floor pain, and connected to the spine bone, luckily my back hasn't been hurting much
Ortho should connect most of the dots but when they heard pelvic floor or maybe spine/sciatica they are like maybe go see those specialists and then nobody talks to nobody else.
I told primary we are playing a game of whack a mole. So disappointing to shuffle this way and that way never knowing if you are going the right way.

[hawkward]

wedding I’m sorry you understand what it’s like. The first time ds2 had a firm plan, he was 7. In January he turned 9 and told me he didn’t want to live anymore. We got a new psychiatrist who is really amazing and we’ve been doing much better, so this felt very unexpected.

[hawkward]

AmyG my doctor thinks it was two major surgeries in a year plus stress from other crap. We did a really thorough work up and consulted the surgeon who caught my GI perf last year.

[byjove]

hawkward I usually post about it in the PCE board, but my 5th grader was inpatient for almost 2 weeks this spring for suicidal ideation and self harm. It started at age 8 for her. It’s been a really rough year and she still isn’t back at school full time. We know what that constant vigilance is like. I don’t know if hugs are appropriate, but I see you and know how exhausting all of it is (I think your son is PANDAS? We struggle with that too- strep is the devil. She has a bipolar 1 diagnosis now too).

[wedding]

byjove what is the PCE board? I would be interested in a safe place to discuss my son’s issues.

[byjove]

Jun 2, 2024 20:20:27 GMT -6 wedding said:

byjove what is the PCE board? I would be interested in a safe place to discuss my son’s issues.

The politics board. Not sure if it's what you are looking for... but maybe we could create a special sub board if there is interest?

[kittyriot]

Hi, things have been hard for the last while for me. In a bad flare, low back, sciatica, similar pitiformis stuff to Amy all raging at once. And a crazy work schedule.

I am going to look into going back to the pain clinic for lidocaine shots. I hate the parasympathetic response I have to the shots. But I like when my hip doesn’t hurt as much.

I’ve also been hit super hard by peri-menopause, so I am seeing a new OB (my lovely one moved out of town) on the 13th. I’m hoping to convince him to just take it all and put me on HRT. I can’t handle the exhaustion and brain fog that’s being added to my already addled brain from the autoimmune brain fog and exhaustion.

[AmyG]

Jun 3, 2024 10:42:49 GMT -6 kittyriot said:

Hi, things have been hard for the last while for me. In a bad flare, low back, sciatica, similar pitiformis stuff to Amy all raging at once. And a crazy work schedule.

I am going to look into going back to the pain clinic for lidocaine shots. I hate the parasympathetic response I have to the shots. But I like when my hip doesn’t hurt as much.

I’ve also been hit super hard by peri-menopause, so I am seeing a new OB (my lovely one moved out of town) on the 13th. I’m hoping to convince him to just take it all and put me on HRT. I can’t handle the exhaustion and brain fog that’s being added to my already addled brain from the autoimmune brain fog and exhaustion.

Sorry you are having the piriformis hip butt sciatica flare stuff. It sucks. I'm in a bad flare up from SOMETHING I did on Wednesday, but I can't figure out what I did on wednesday. Like maybe maybe it's cause I tried a different muscle relaxer the week before? or I did a super small rocking motion exercise a couple of times to increase my ability to get out of be on both sides. idk. 

My pain dr office has not been forthcoming on things they can do--aside from here's some meds.
So if I think I want something, do my own research about it, check their website descriptions of what they do. then  I'll be like, so does your office do xyz? and it will be yes this dr does that or no we refer out for that. at first they said no on piriformis injections then yes. 

So I had a piriformis injection from them, but they use fluoroscope instead of ultrasound and they don't use much lidocaine at all. So I didn't get much relief, and jokingly said to pain dr lady I didn't get much relief maybe because they didn't use enough lidocaine-- so maybe I just need a lidocaine injection.

I didn't think they did it but now I have to specificaly ask, does this office do just lidocaine injections. 
Where do they shoot you with the lidocaine at ? lol

Menopause is no joke, it is, for most, kinda short lived, with head clearing once the hormones settle/stop production. Do you have history of yucky gyn issues plus menopause shit?  so maybe they'll take out everything?

[kittyriot]

Jun 3, 2024 15:46:07 GMT -6 AmyG said:

Jun 3, 2024 10:42:49 GMT -6 kittyriot said:

Hi, things have been hard for the last while for me. In a bad flare, low back, sciatica, similar pitiformis stuff to Amy all raging at once. And a crazy work schedule.

I am going to look into going back to the pain clinic for lidocaine shots. I hate the parasympathetic response I have to the shots. But I like when my hip doesn’t hurt as much.

I’ve also been hit super hard by peri-menopause, so I am seeing a new OB (my lovely one moved out of town) on the 13th. I’m hoping to convince him to just take it all and put me on HRT. I can’t handle the exhaustion and brain fog that’s being added to my already addled brain from the autoimmune brain fog and exhaustion.

Sorry you are having the piriformis hip butt sciatica flare stuff. It sucks. I'm in a bad flare up from SOMETHING I did on Wednesday, but I can't figure out what I did on wednesday. Like maybe maybe it's cause I tried a different muscle relaxer the week before? or I did a super small rocking motion exercise a couple of times to increase my ability to get out of be on both sides. idk. 

My pain dr office has not been forthcoming on things they can do--aside from here's some meds.
So if I think I want something, do my own research about it, check their website descriptions of what they do. then  I'll be like, so does your office do xyz? and it will be yes this dr does that or no we refer out for that. at first they said no on piriformis injections then yes. 

So I had a piriformis injection from them, but they use fluoroscope instead of ultrasound and they don't use much lidocaine at all. So I didn't get much relief, and jokingly said to pain dr lady I didn't get much relief maybe because they didn't use enough lidocaine-- so maybe I just need a lidocaine injection.

I didn't think they did it but now I have to specificaly ask, does this office do just lidocaine injections. 
Where do they shoot you with the lidocaine at ? lol

Menopause is no joke, it is, for most, kinda short lived, with head clearing once the hormones settle/stop production. Do you have history of yucky gyn issues plus menopause shit?  so maybe they'll take out everything?

When I was doing lidocaine, it was going into all the main fibro pain points. Neck, shoulders, sciatica, low back and hips.

In knees they were doing cortisone as needed (like once a year).

I think the amount was breaking me. 11 to 13 shots each session.

And yes, I have both PCOS and endometriosis. I had abdominal surgery shortly after DD was born to remove a baseball sized cyst that they were concerned was cancerous. I’ve continued to have issues as I’ve aged. A period recently lasted a month and was seriously heavy for 10 of those days, so my dr has written in her referring note that she believes surgery is likely the best option for me, so I appreciate that. Initially she and I had been talking about an ablation, but current research indicates that women with similar gynaecological issues as mine end up with a full hysterectomy within five years of an ablation anyway. So I’m hoping to just skip what feels like an unnecessary step.

[AmyG]

kittyriot
Thanks for reply about lidocaine I will ask

I think with your history sounds like good candidate for surgery to take it all out. Ablation makes no sense cause that wouldn't take care of the cysts

[byjove]

kittyriot will they do excision too? I had endo and adeno and had excision of my endo (I had organs and ligaments and nerves adhered to other body parts) and a hysterectomy about 3 years ago now and have no regrets!! I have ovarian cyst issues still (rupturing hemorragiac type), but it’s comparatively manageable.

[hawkward]

byjove wedding a group of us kind of took over the SN board for talking about kids with MH stuff. We password protected it.

[AmyG]

Just got a letter in the mail that my GYN specialist that did the Botox in my pelvic floor is no longer going to be a Dr at the women's institute and did not mention if she's moving elsewhere.
So my follow up for possible other procedures consult on July 11th won't really help me much if she's not there and who knows if she's maybe just retiring or something. idk
the other 2 specialist GYN dr's in the office I have to call tomorrow to see if they will accept me as a patient and have an appt before sept to do the follow up to see if there are other treatment possible.
arg another hoop to jump thru

[kittyriot]

Jun 3, 2024 18:28:33 GMT -6 byjove said:

kittyriot will they do excision too? I had endo and adeno and had excision of my endo (I had organs and ligaments and nerves adhered to other body parts) and a hysterectomy about 3 years ago now and have no regrets!! I have ovarian cyst issues still (rupturing hemorragiac type), but it’s comparatively manageable.

I would LOVE excision surgery. Technically when they did abdominal surgery to remove the cyst, that’s when they found I was riddled with endo. And my OB at the time did the ´excision’.

I’m in Canada so we are very limited in proper excision surgeons outside of our largest urban centres. And most are waitlisted for years…

So I’m hoping to ask these and other questions when I see my new OB, less than two weeks now!!

And AmyG, what a trial you have had!! I hope just general lidocaine shots might be able to help. They definitely helped my hip. Just took me a couple of days each week to recover from all the shots and wasn’t getting me enough relief longer term.

[AmyG]

kittyriot, I know you are in Canada, and then I forget.
I do not keep a spreadsheet but as I get older I think well maybe.... hahah
Hope your OB has good options for you and if you do end up with a long wait, fingers crossed they do a waitlist and you get called sooner than expected.

[hawkward]

kittyriot we do a lot of hysters on endo patients. I love it when they come in post op because they’re usually feeling great.

If they’ll do it for you, I’d recommend having your ovaries out too. I had mine taken out (it’s kind of a long story how I got there) and my friend had a hyster without oophorectomy. I’m doing way better hormonally and symptomatically less than a year later.

[hawkward]

byjove I forgot to come back here. Strep *is* the devil. DS1 (who is otherwise neurotypical) had PANDAS after a “silent” strep infection that caused scarlet fever. I’m sorry you know what it’s like too.

[kittyriot]

Jun 6, 2024 16:43:44 GMT -6 hawkward said:

kittyriot we do a lot of hysters on endo patients. I love it when they come in post op because they’re usually feeling great.

If they’ll do it for you, I’d recommend having your ovaries out too. I had mine taken out (it’s kind of a long story how I got there) and my friend had a hyster without oophorectomy. I’m doing way better hormonally and symptomatically less than a year later.

I hope he’ll agree to it all, but that’s my plan, gone, ovaries too. And then HRT. My hormones are COMPLETELY shot right now. Like barely over zero, on both the estrogen side and testosterone side so no wonder, no matter what I do, I am completely and utterly wrecked.

And then there’s everything else.

I figure if he agrees. I’ll be looking at a years wait on surgery. But I do want him, he’s the best in the area.

[AmyG]

kittyriot, a week to go? fingers crossed dr sees this all the same way we do!

[kittyriot]

Jun 11, 2024 17:18:18 GMT -6 AmyG said:

kittyriot, a week to go? fingers crossed dr sees this all the same way we do!

2 days actually

[AmyG]

I'm going to complain about my pelvic floor and the pt that goes with it. lol
yes it's internal work, yes it sucks and it weird shit.

Pelvic floor pt keeps saying she never sees 1 sided pelvic floor issues as being the reason for the pain and tight muscles and nerve pain. My left side is the problem, not my right.

basically she's reached the end of what she thinks she can do for me until I circle back around to ortho or pain dr to see if it's high hamstring problem, sit bone/ischial-gluteal bursitis or something else.
I was recommended to get a pelvic floor wand, which is an s-shaped silicone wand thing to touch internal muscles myself at home to see if it helps to keep things not tight after Botox until I see another dr and figure it out.

Today she touched further back muscles than usual, just with her finger,
found sort/tight spots and then used my pelvic wand to touch same spots and into a little deeper pelvic floor muscles.

Holy shit my pelvic floor cramps and pain out to my sit bone are are intense
makes me think it really is pelvic floor that's the problem.
see I do not know what's wrong with me.

[gingy]

Dumb vent. I take THC for lupus-related pain. The THC worsens the dry mouth of Sjogrens. I take it anyway bc dry mouth > joint pain. But UGH

[AmyG]

gingy
Never thought of thc giving dry mouth. I wonder if that's why there's a lot of drinks with it in there? Hmmmm
I have a new med that seems to give me dry mouth but it's not listed as a side effect so maybe it's just me?

[hawkward]

gingy the dry mouth always gets me too. Hard candy helps but it’s still annoying.