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

[AmyG]

How's everyone doing?
anything new or different?
Dr visits going well or too many/not enough?
Diagnoses and treatments ok? 
What do you wish you could figure out?
Is summer better/easier/harder/worse?
something good??

[AmyG]

Jul 17, 2024 17:50:02 GMT -6 AmyG said:

How's everyone doing?
anything new or different?
Dr visits going well or too many/not enough?
Diagnoses and treatments ok? 
What do you wish you could figure out?
Is summer better/easier/harder/worse?
something good??

I'll start at bottom
summer is harder worse pain less able to do shit without pain

Diagnoses just got results of my hip mri nothing totally broken but a few different messed up things.

Have to unpack mri results with yet another dr on Tuesday.

Pelvic floor dr released me from her care with continued painful hypertonic deep pelvic floor muscles. Referral to PM&R doctor which there aren't many around but those that are specialize in pain management like my pain clinic dr that I see his PA. Or maybe Mayo clinic that doesn't take my insurance.

New? grandson due any time now. Dil is definitely done and ready.

[musicfrk]

How's everyone doing?
-I'm...here. Exhausted at the moment from work

anything new or different?
-we switched up my diuretic a few weeks to a month back. The pills are larger and for someone with a terrible gag reflex, it's been a struggle. But I'm making it work

Dr visits going well or too many/not enough?
- I think I have a check in next week. I'm supposed to make an appointment with the advanced heart failure clinic 3 hours away and I keep putting it off. First was because they called my work phone twice, my personal phone twice, my husband once, and my mom once...all in the span of 3 hours, because they had a cancellation available the next day. And sent a couple mychart messages.

Diagnoses and treatments ok?
-I suppose. I had a stress test which didn't reveal anything different.

What do you wish you could figure out?
- a lot, lol

Is summer better/easier/harder/worse?
-right now harder. Trying to balance diuretics and remain hydrated is not an easy feat, add to it that I've spent the past 3 nights in the warehouse between being short staffed and our power being out for the past 2 solid days

something good??
-I got a solid 10 hours of sleep last night?

[AmyG]

musicfrk
Oh gosh big sized pills are the worst. I have a new muscle relaxer that is like the size of a quarter. OK prob only size of a nickle but totally a choking hazard.

How do you drink enough water and not pee alllll the time? That can really effect your whole day.

And that many phone calls gosh I would never wanna call them back.

Hope things settle down a bit

[gingy]

Nothing new on the doctor/diagnosis front. I have all of my appointments in March and September unless something goes wrong.

All meds seem to be working. No cluster headaches in the last six months!

Summer is better for joint pain, worse for skin. I have to wear long sleeves basically all the time. I have upgraded my UPF wardrobe though, thanks to some trips to Bass Pro. UPF shirts are finally getting less ugly. I won't say cuter, but at least less ugly.

Raynauds is weird in the summer because it sneaks up when I do normal shit like take DS's ice pack out of the freezer or hold iced coffee. Like, ope, can't feel my fingers now. I did invest in a cute coffee sleeve from Etsy though so that doesn't hurt my hands as much.

[hawkward]

I had SI joint injections yesterday and feel amazing today. I know it’s short lived but I’ll take it. I had a slow day at work and got so much monthly/quarterly stuff done.

A couple of weeks ago, I completely lost control of my left leg and fell on gravel. My face, hands, and knees were absolutely fucked up. I fractured my chin.

That was the catalyst to me finally making an appointment with a neurosurgeon. I go in August. My surgeon coworkers think I’m headed for spine surgery. My boss might kill me…

[wedding]

Jul 17, 2024 17:50:02 GMT -6 AmyG said:

How's everyone doing?
anything new or different?
Dr visits going well or too many/not enough?
Diagnoses and treatments ok? 
What do you wish you could figure out?
Is summer better/easier/harder/worse?
something good??

Up and down. I was able to get the current cyst I have due to my HS calm enough to do all the activities on our family vacation in Alaska. It was amazing! Unfortunately I somehow developed this dyshidrotic eczema that is extremely itchy. It was likely caused by my immune system overreacting to an allergen. I just started a steroid cream that should help.

I have a surgical consult next week to remove this cyst. It’s been active and painful for about 8 months. It’s on my panty line so I’m going for full anesthesia. I did one last year in office and it didn’t heal well. I couldn’t care less about the surgery but I’m not looking forward to the bills involved.

The something good is there’s a plan in place for that and I just started monthly injections for my migraines so there’s hopefully a light at the end of the tunnel here.

In terms of what I hope to figure out- why does my body hyper react to everything? I need someone to explain it to me like I’m 5. My immune system attacked my pancreas giving me type one diabetes and it continuously overreacts to everything leading to new issues, like this itchy eczema that’s keeping me up at night. I wish I had some answers and some real solutions instead of just putting out fire after fire.

[sasam]

Things are going pretty well. I just did my 6th monthly maintenance dose of Kesimpta this week. I'm hoping everything is leveling out with the constant sickness. This past month has been the first time I have not been hit with a sickness after taking my dose. During the first 6 months of this year, I had strep (twice), Covid, shingles, two intense stomach viruses, plus a couple of random colds. DH is currently sick with some sinus pressure/head cold thing, so I am doing all I can to stay healthy. DS1 started back to school this past week (year round school) so we'll see if I can keep up this streak of staying well. It's been nice to feel relatively healthy the past several weeks!

I definitely feel like the Kesimpta is working for my MS symptoms. I see my neurologist in October to check in. I've noticed a decrease in feeling my existing symptoms day to day. The brain fog has mostly lifted and the fatigue is a lot less intense. The tingling on my right side is also a lot less noticeable. I really only notice my symptoms now if I am really stressed, extra tired, or if I overdo it with activity (especially in the crazy heat we've had). I do feel like I am starting to find a better balance of getting stuff done while also finding time to rest. I'm not always as productive as I'd like to be, but I know that getting plenty of sleep and keeping my stress levels low help me feel better overall.

Another thing that I think has helped is trying to focus on eating better and easing into exercise. I haven't made any huge changes, but I've been working with a nutritionist to make small, sustainable shifts in my eating habits. I've definitely noticed a difference! It definitely helps with my energy levels and I feel like I've been more mindful with my eating.

[byjove]

hawkward, how scary!!

[AmyG]

Jul 18, 2024 8:42:02 GMT -6 gingy said:

Nothing new on the doctor/diagnosis front. I have all of my appointments in March and September unless something goes wrong.

All meds seem to be working. No cluster headaches in the last six months!

Summer is better for joint pain, worse for skin. I have to wear long sleeves basically all the time. I have upgraded my UPF wardrobe though, thanks to some trips to Bass Pro. UPF shirts are finally getting less ugly. I won't say cuter, but at least less ugly.

Raynauds is weird in the summer because it sneaks up when I do normal shit like take DS's ice pack out of the freezer or hold iced coffee. Like, ope, can't feel my fingers now. I did invest in a cute coffee sleeve from Etsy though so that doesn't hurt my hands as much.

Gosh I wanna get down to dr appt twice a year lol.
My neighbor has reynaulds and breaks out in a cold rash when she like takes stuff out of the freezer. I guess that's part of why she doesn't live in the north east us anymore.

[AmyG]

hawkward
You broke your chin wow! Are you OK?
My si joint inj helped with that pain right there but not the other pains.
Hope you get a good report from neurosurgeon. They can do such amazing things nowadays

[AmyG]

wedding
Sorry everything in your body ganging up on you.
Visit to Alaska you got rash, it's not allergy to cold is it?
Migraine meds hope are the secret weapon to end them for you.
Cyst removal fingers crossed consult goes well.
Your body overreacts and attacks.
My body overreacts to any pain. Oh this should be jusr take a tylenol and I'm looking for a leftover vicodin.
Gosh bodies are weird.

[AmyG]

sasam
I need to add mindfully eating to my to do list. It's so hot I should be existing on salads but it's just too hard. easier to eat chocolate

I don't know anything about ms treatments but glad to hear this med seems to be helping. Hope it's not one of those $$$$$ meds out there.

[AmyG]

byjove how are you doing?

[hawkward]

Jul 21, 2024 12:18:56 GMT -6 AmyG said:

hawkward
You broke your chin wow! Are you OK?
My si joint inj helped with that pain right there but not the other pains.
Hope you get a good report from neurosurgeon. They can do such amazing things nowadays

I’m lucky my jaw is intact. “Fortunately” the fracture is diagonal across the front, so other than having a really sore swollen spot I didn’t have a lot of effects. It looks almost back to normal now, a few weeks later. I’ll have a scar though.

I get a really good “bang for my buck” with the kenalog injections. It lowers my baseline pain from a 7 to 3. When we alternate SI, ESI, and RFA I can keep a decent baseline.

[gingy]

Jul 21, 2024 12:16:27 GMT -6 AmyG said:

Jul 18, 2024 8:42:02 GMT -6 gingy said:

Nothing new on the doctor/diagnosis front. I have all of my appointments in March and September unless something goes wrong.

All meds seem to be working. No cluster headaches in the last six months!

Summer is better for joint pain, worse for skin. I have to wear long sleeves basically all the time. I have upgraded my UPF wardrobe though, thanks to some trips to Bass Pro. UPF shirts are finally getting less ugly. I won't say cuter, but at least less ugly.

Raynauds is weird in the summer because it sneaks up when I do normal shit like take DS's ice pack out of the freezer or hold iced coffee. Like, ope, can't feel my fingers now. I did invest in a cute coffee sleeve from Etsy though so that doesn't hurt my hands as much.

Gosh I wanna get down to dr appt twice a year lol.
My neighbor has reynaulds and breaks out in a cold rash when she like takes stuff out of the freezer. I guess that's part of why she doesn't live in the north east us anymore.

I try to get all my doctors in one on day when I can! I see my primary and rheum on the same day in Sept, and it’s the same day DS has his annual well check. Then in the spring I add in my derm instead of DS. It’s a long day but it keeps me from taking scattered time off throughout the year.

[sasam]

Jul 21, 2024 12:25:52 GMT -6 AmyG said:

sasam
I need to add mindfully eating to my to do list. It's so hot I should be existing on salads but it's just too hard. easier to eat chocolate

I don't know anything about ms treatments but glad to hear this med seems to be helping. Hope it's not one of those $$$$$ meds out there.

Thank you! I am lucky to have good insurance that covers most of the cost and an amazing neurologist that fought to get them to cover it when they first tried to deny it. I also finally got approved for copay assistance through the manufacturer, so this past month the cost was 100% covered, which was so nice! I was paying a couple hundred a month for it, so that extra coverage is helpful.

[miawallace]

I think I am developing POTS. I’ve had two episodes in the last week. I already sent a message to my doctor.
I think what’s triggering them is that I had a virus recently. It was pretty mild but I think it messed my whole system up.
I basically woke up from sleep with an elevated heart rate. I think they call that adrenaline dumps. It was around 2am. The worst feeling ever. My oxymeter was clocking me at 99 oxygen but my heart rate was 149. My blood pressure high too but eventually went back down to my normal 117/78.

Felt like I couldn’t breathe and stroking out. But it went away after I had a teaspoon of salt and a Gatorade. I only know to do that bc I saw that on tiktok. It wasn’t a panic attack. Those feel different to me. Anyway. Just rambling. it sucks bc I literally had gotten a clean bill of health about everything else.
My vitals are back to normal now but fuck that was scary.

[wedding]

Jul 21, 2024 12:23:07 GMT -6 AmyG said:

wedding
Sorry everything in your body ganging up on you.
Visit to Alaska you got rash, it's not allergy to cold is it?
Migraine meds hope are the secret weapon to end them for you.
Cyst removal fingers crossed consult goes well.
Your body overreacts and attacks.
My body overreacts to any pain. Oh this should be jusr take a tylenol and I'm looking for a leftover vicodin.
Gosh bodies are weird.

The rash actually does better in the cold. But it wasn’t all that cold there. The Derm said it could be a reaction to an allergen or stress. I already get scalp psoriasis when I am stressed, so I wouldn’t be surprised if this was a fun add on.

[byjove]

I am doing ok. I don't love the infusions, but I think the med is starting to kick in. Looks like my diabetes scare was all rare side effects from the rinvoq (so typical for my body, my H jokes I should be included in all med trials...), so that is good. But our term life insurance unexpectedly just came up for renewal (10 years) and our rates are going up 400%, so I've been shopping for a better rate and it is all just terrible timing. I'll be glad to have this behind me.

[AmyG]

HipMRI shows a small hip labrum tear
and mild to moderate tendinosis and peritendinitis of the left glute minimus and medius
tendon insertions with low grade partial tearing.

Different ortho doc today thinks those aren't the reason for my pain
since most of my pain is not in the outside of the hip
but instead deep gluteal.
Nothing to repair unless they tear more and repeat mri shows tears bigger.
muscle strength and range of motion is ok,so no recommendation for more pt
even though I maybe should know if any of my existing exercises might need to be adjusted
to be sure they aren't a problem with the labral tear or glute tears.

I'm getting referred to a diff doc who has more expertise on deep gluteal syndromes.
Supposed to get a phone call to verify if that doc does botox piriformis injections.

around and round and round we go

[AmyG]

byjove, sorry about the infusions, but happy about the diabetes only being a scare.
good luck finding the new policy you are looking for. hope it's a good one finger's crossed for lower price

[AmyG]

miawallace, I know nothing about POTS. glad what you did helped you get feeling better.
I've had a couple of really really scary nightmares in my life where my pulse was thru the roof and blood pressure high as well. woke up drenched in sweat like I had been running for my life. That's closest I can think to how you might have felt.
did doc message you back yet with any ideas?

[miawallace]

Jul 23, 2024 14:15:11 GMT -6 AmyG said:

miawallace, I know nothing about POTS. glad what you did helped you get feeling better.
I've had a couple of really really scary nightmares in my life where my pulse was thru the roof and blood pressure high as well. woke up drenched in sweat like I had been running for my life. That's closest I can think to how you might have felt.
did doc message you back yet with any ideas?

I have an appointment in august where they’ll be seeing what’s going on. I’ve been logging my bp and heart rate in the meantime as reference.
Although, POTS has been on the rise since COVID. Viruses seem to be a trigger for me. Takes a while for my body to reset. Good thing is pots isn’t super serious mostly annoying and scary at times.

[musicfrk]

I landed myself a 4 day ICU stay, I think between dehydration and exhaustion from work. Our power was out from 815 pm Monday the 15th until we finally got a generator around 430 pm Friday the 19th, coupled with 2 days where I put in 19 hours at work. Then Saturday the 20th worked 12 hours to clear up timecards. It hit me hard Saturday overnight, and Sunday my fitbit was alerting me that i was having signs of afib. Sure enough, afib with my hr in the 160's, ended up being cardioverted Tuesday afternoon after meds weren't helping, finally released mid afternoon Thursday so I could stare at the walls at home instead of the icu. So, adding the HF transitional care team back into the dr visit rotation, plus now an electrophisiologist.

[Wtfshouldmynamebe]

I had a huge fall yesterday (I was carrying things and didn’t notice my feet got tangled on a piece of plastic on the ground - I was basically hogtied). I landed on my knee and it was bleeding everywhere. Today I’m noticing the pain everywhere else. So that’s fun

[wedding]

Jul 26, 2024 22:14:33 GMT -6 musicfrk said:

I landed myself a 4 day ICU stay, I think between dehydration and exhaustion from work. Our power was out from 815 pm Monday the 15th until we finally got a generator around 430 pm Friday the 19th, coupled with 2 days where I put in 19 hours at work. Then Saturday the 20th worked 12 hours to clear up timecards. It hit me hard Saturday overnight, and Sunday my fitbit was alerting me that i was having signs of afib. Sure enough, afib with my hr in the 160's, ended up being cardioverted Tuesday afternoon after meds weren't helping, finally released mid afternoon Thursday so I could stare at the walls at home instead of the icu. So, adding the HF transitional care team back into the dr visit rotation, plus now an electrophisiologist.

That sounds so scary. I hope you continue to improve.

[wedding]

Jul 26, 2024 22:54:54 GMT -6 Wtfshouldmynamebe said:

I had a huge fall yesterday (I was carrying things and didn’t notice my feet got tangled on a piece of plastic on the ground - I was basically hogtied). I landed on my knee and it was bleeding everywhere. Today I’m noticing the pain everywhere else. So that’s fun

I’m sorry. I hope the pain eases up.

[mothafuckinteatime]

Heyooo 👋🏻

I think I go here now, unfortunately.

Friday I officially received a trifecta diagnosis-Ehlers Danlos, POTS, and MCAS. All three tend to go hand in hand as comorbidities of EDS. I’m awaiting genetic results for specifics on the subtype of EDS but for now just having some diagnostic framework has been really helpful.

I’ve had years of joint issues and pain, but wrote them off as weird injuries and clumsiness. A chiro I saw suggested I be evaluated for EDS years ago, but I have had a hard time finding a dr who knows anything about it so I just kind of blew it off. A rheum I saw to be evaluated told me they didn’t know anything about EDS, but that I was certainly hypermobile and any injuries were likely due to that.

The last year+ I’ve had tachycardia and dizziness/blurred vision when changing position, but I didn’t pass out or have other issues so I just kind of wrote it off. I’ve had the runaround from different docs, and eventually just gave up trying to figure out what was up. This spring my asthma flared and I hadn’t been able to get it under control, going from using my inhaler 1x a month to multiple times daily. I also started getting rashes, especially after eating/drinking certain foods. My dr. suspected MCAS, and treatments helped get things under control (thankfully). She then had me come back and do a tilt test (for pots) and evaluated for EDS, both of which were positive.

I feel weird about it all. I’ve always gritted my teeth and just dealt with whatever issues I was having, but now it’s weird knowing that the pain and issues I was dealing with were all connected, and I’m not just weak/clumsy/whatever. I’ve also seen a lot online about EDS, some things are great about raising awareness, some are not so great with dismissiveness from doctors on Reddit and similar. The concept of illness influencers is super weird to me, but I do appreciate being able to see people with similar experiences sharing what they have learned.

Anyway. I am working on finding a sweet spot with pain management, and giving myself some grace to rest when I’m having bad days. But I see you all connecting and sharing and thought I’d check in and share where I’m at while I start this new journey.

[mothafuckinteatime]

miawallace

My dr told me for POTS that you basically cannot have too much salt intake, but also that caffeine and alcohol can make it worse because they are diuretic. The liquid ivs are a great option as well as the salt/Gatorade connection. My faveis the white peach liquid ivs.