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

[AmyG]

mothafuckinteatime,
Welcome to the world of a chronic illness. Good news you seem to have a good grasp of what it is, with finally some diagnoses and possible treatments.
Knowing when to stop doing stuff and sit/lay your butt down is something I continually struggle with.

[hawkward]

mothafuckinteatime DS2 and I have been living in the EDS space for a few years now and it’s… a lot.

The dumbest thing I didn’t realize about myself is that I was always craving salt. I could eat it all day long without getting high sodium or BP, and it makes me feel better. And I’m a nurse, so I should have put two and two together but just thought I was weird.

If there’s anything I can do while you go through this, let me know.

[kittyriot]

@mothsfuckinteatime, I’m here for you as well. If have EDS and suspected MCAS and POTS. I’ve spent a lot of time reading and informing myself as I’m still working on the knowledgeable provider piece.

[mothafuckinteatime]

hawkward, when I told my H about the salt he just cackled. The amount of times I’ve simply drowned my food in that while he looked at me crazy is just beyond.

[hawkward]

Jul 28, 2024 16:54:15 GMT -6 mothafuckinteatime said:

hawkward, when I told my H about the salt he just cackled. The amount of times I’ve simply drowned my food in that while he looked at me crazy is just beyond.

My dad does the same. And I have like probably ten different salts for different foods.

[AmyG]

Let's see
right now I'm playing jenga for which treatment or test I need next
with a high deductible medical plan.
I pay $100 just to walk in the door for a specialist.

Mri I have
Mild to moderate tendinosis and peritendinitis of the left
gluteus minimus and medius tendon insertions
with low-grade interstitial partial tearing.
Anterosuperior labral tear.

Hip Dr sent me to diff Hip ortho Dr that could repair
but he thinks they are not bad enough to repair
and are not the cause of my hip/butt pain, and numbness.

His Recommendation is steroid shot in the above glutes that are inflamed
maybe steroid in the hip joint itself, won't fix the stuff but might remove some pain
But he doesn't do these things.
SIGH

PT not recommended cause I've been to shit ton of PT
my range of motion and strength is fine.
myself I would consider PT to figure out if there's any adjustments
to exercise and movements that should be done to not make these things hurt so much.

Also was referred to a gluteal muscle ortho specialist
I can see him in mid-Sept. Maybe diagnosis of deep gluteal nerve entrapment.

And referred to PM&R Dr that does pain management
He's recommended Botox in the piriformis
he thinks upon reading the dr notes of my pelvic floor gyn specialist
that she put most of the 200 units botox in other pelvic floor muscles
and maybe 5 unit max would have been available to put in the piriformis
and he thinks piriformis needs 100 units.
Ins approval received promptly but cost estimate is $850+

he's replied to me today
about doing an EMG to figure out where the nerves are impinged
And I just asked if he does the glute injections.

So far this PM&R pain doctor actually seems to be listening
and understanding that I have several different distinct pains
that the nerves are numb and they maybe ache but nerve PAIN is not the primary, it's the numbness.

I'm not really sure what to do next exactly
but I've been like that for 2.5 years now

[wedding]

AmyG I have no answers for you but I am so sorry you are dealing with all of this. Finding the right medical care while navigating insurance is just a nightmare and it’s really sad that decisions have to be made at the detriment to our health due to the costs of medical care. I hope there’s viable solutions for you soon.

[Rusty Red]

Been a while since I checked in. My tendons are just pissy in general and now I have one irritated in my shoulder/bicep.

I did switch to Cymbalta from Paxil for my anxiety to help with some of the chronic pain, haven't been on it long enough yet to notice a difference. Here's hoping. At least I didn't hit any nasty side effects.

[Rusty Red]

AmyG both my hip labrums are torn. Doc pretty much said do what you want until you can't stand it anymore, then come see me for repair if you want. I never loved the long-term success rate I read on repairs anyway, so I was like okey dokey.

I hope you find a solid way forward.

[AmyG]

Aug 4, 2024 18:50:24 GMT -6 wedding said:

AmyG I have no answers for you but I am so sorry you are dealing with all of this. Finding the right medical care while navigating insurance is just a nightmare and it’s really sad that decisions have to be made at the detriment to our health due to the costs of medical care. I hope there’s viable solutions for you soon.

The right medical care for the right price is very difficult to find.
A dr that looks at whole body or all symptoms and listens truly is also hard to find.
The PM&R dr I was referred to seems to be trying to hit those goals and is very responsive.
I saw him last week mostly about botox in piriformis as not many drs under my insurance do that and he said we'd get insurance approval and estimated cost first. Had that by Friday.

I sent a question sat evening about other treatments/injections and such he replies sun am.
I replied sun afternoon with question about what I should do 1st and he answered me right away with a plan to do EMG 1ST

So that's been ins approved supposed to be covered with office visit copay only and nurse called to schedule for Friday because of a cancelation.

Moving right along hopefully in right direction.

[miawallace]

Jul 28, 2024 14:36:22 GMT -6 mothafuckinteatime said:

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.

The world of electrolytes is so daunting. I keep seeing Gatorade or even body armour are good options but there’s these other powders that work way better but there’s so many options I don’t know what to pick. Am I overthinking this? I’m new to all this.

[mothafuckinteatime]

Aug 9, 2024 15:32:45 GMT -6 miawallace said:

Jul 28, 2024 14:36:22 GMT -6 mothafuckinteatime said:

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.

The world of electrolytes is so daunting. I keep seeing Gatorade or even body armour are good options but there’s these other powders that work way better but there’s so many options I don’t know what to pick. Am I overthinking this? I’m new to all this.

I just bought Buoy too. It’s supposed to be tasteless, but in water I get a little hint of something. In any other drink it’s fine, and I like not having to have a whole separate electrolyte drink too. I don’t know if I’ll feel different or not because I just got it. But they give a lifetime discount to anyone with a chronic condition.

[miawallace]

Aug 9, 2024 15:52:39 GMT -6 mothafuckinteatime said:

Aug 9, 2024 15:32:45 GMT -6 miawallace said:

The world of electrolytes is so daunting. I keep seeing Gatorade or even body armour are good options but there’s these other powders that work way better but there’s so many options I don’t know what to pick. Am I overthinking this? I’m new to all this.

I just bought Buoy too. It’s supposed to be tasteless, but in water I get a little hint of something. In any other drink it’s fine, and I like not having to have a whole separate electrolyte drink too. I don’t know if I’ll feel different or not because I just got it. But they give a lifetime discount to anyone with a chronic condition.

I bought Dr Brown’s Electrolyte Mix and some Pedialyte powder mixes on amazon. So we’ll see. Electrolyte mixes are so expensive 🫤.
I’ll check buoy too. Trial and error these fuckers.

[senneth]

Aug 9, 2024 15:59:46 GMT -6 miawallace said:

Aug 9, 2024 15:52:39 GMT -6 mothafuckinteatime said:

I just bought Buoy too. It’s supposed to be tasteless, but in water I get a little hint of something. In any other drink it’s fine, and I like not having to have a whole separate electrolyte drink too. I don’t know if I’ll feel different or not because I just got it. But they give a lifetime discount to anyone with a chronic condition.

I bought Dr Brown’s Electrolyte Mix and some Pedialyte powder mixes on amazon. So we’ll see. Electrolyte mixes are so expensive 🫤.
I’ll check buoy too. Trial and error these fuckers.

Normalyte works best for me. Then Liquid IV and DripDrop.

[miawallace]

Aug 9, 2024 18:04:11 GMT -6 senneth said:

Aug 9, 2024 15:59:46 GMT -6 miawallace said:

I bought Dr Brown’s Electrolyte Mix and some Pedialyte powder mixes on amazon. So we’ll see. Electrolyte mixes are so expensive 🫤.
I’ll check buoy too. Trial and error these fuckers.

Normalyte works best for me. Then Liquid IV and DripDrop.

I know this is person contingent, but how many do you drink a day? Is 1 enough? I’ve seen people drink 3-4 a day. I’m just trying to figure out what my new acquired ailment is going to cost me lol

[senneth]

Aug 9, 2024 18:06:58 GMT -6 miawallace said:

Aug 9, 2024 18:04:11 GMT -6 senneth said:

Normalyte works best for me. Then Liquid IV and DripDrop.

I know this is person contingent, but how many do you drink a day? Is 1 enough? I’ve seen people drink 3-4 a day. I’m just trying to figure out what my new acquired ailment is going to cost me lol

3-4 doesn’t even come close to my intake. It’s pretty dependent on severity - Dysautonomia has almost killed me a couple times, and that’s excluding heat injuries. POTS specifically didn’t almost kill me (although on bad days my HR still increases over 100 bpm going from lying down to standing, and IIRC dx criteria is only 30bpm increase), but repeatedly and rapidly cycling between severe bradycardia and significant tachycardia did. Apparently your ANS is more likely to go haywire in an unexpected way if you have any type of dys, including POTS.

I drink 5-6 liters of fluids a day and get 10 grams of sodium. Most of that is oral rehydration solution, but I do tolerate Normalyte’s electrolyte capsules (every other brand has made me sick). They don’t have sugar in them, so they don’t work as well as the oral rehydration solution, but the sodium/potassium ratio is right, and when you dramatically increase sodium you can get into trouble if you don’t also increase other electrolytes.

That said, I lose fluids way too fast, and we don’t know why. The dysautonomia specialist told me he typically recommends 5-10 grams of sodium, but most patients don’t need the volume of fluids I do. Since I crash hard if I decrease oral fluid intake to 3L a day, he said to stay at the 5-6L but make sure I stay close to 10grams of sodium a day.

I do NOT recommend increasing sodium that much until a Dr has told you to. But if you tolerate any of the electrolyte capsules, a combination of those and the ORS costs less than just the ORS powder.

[senneth]

miawallace In general, they recommend oral rehydration solution (ORS) for POTS instead of Gatorade (too much sugar, not enough electrolytes). My drs recommended the ratio the WHO recommends. You CAN make it at home - it just tends to taste odd. But the sodium/potassium/sugar ratio is pretty important.

ETA: One of the Pedialyte formulations works for me, but I’m blanking on the name - it’s the one with a ton of sodium. I buy it if I run out of normalyte and can’t find enough LiquidIV and DripDrop to last until I can get them ordered.

[miawallace]

Aug 9, 2024 18:54:58 GMT -6 senneth said:

miawallace In general, they recommend oral rehydration solution (ORS) for POTS instead of Gatorade (too much sugar, not enough electrolytes). My drs recommended the ratio the WHO recommends. You CAN make it at home - it just tends to taste odd. But the sodium/potassium/sugar ratio is pretty important.

ETA: One of the Pedialyte formulations works for me, but I’m blanking on the name - it’s the one with a ton of sodium. I buy it if I run out of normalyte and can’t find enough LiquidIV and DripDrop to last until I can get them ordered.

Yes! I just saw a list on the Reddit thread so I may buy some of the top recommended stuff too. Like LMNT and liquid IV and drip drip. Let’s see what works.

My doctor suspects I have it. She actually suspects I’ve had it for years but it’s gotten more moderate recently with this post viral flare. so while I wait to see a cardiologist she just said to drink more electrolytes. Anyway, I’ll keep everyone posted bc it’s a LOT of new stuff for me.

[hawkward]

Well. I saw the neurosurgeon and the only fix is surgery. And a pretty extensive one at that. Eight hours, multiple surgeons, three nursing teams, vascular clearance. Four night stay in the hospital with six week recovery. I should get motor function back but the neuropathy might be permanent.

The alternative is keeping like I’m doing with injections and PT, prolonging eventual paraplegia. So like not really a choice.

Fortunately my boss is cool with it and my coworkers, family, etc., are supportive.

[AmyG]

Omg hawkward
That's a lot to process
Sorry its not easy for you
These surgeons can do soooo much better easier than ever before

but that certainly doesn't make it easier or less scary on you does it?

[Rusty Red]

Damn, hawkward. I'm sorry.

[miawallace]

hawkward damn that’s intense. Has a date been set?

[mothafuckinteatime]

Wow hawkward that sounds rough! Is this something you can schedule when more convenient or do you need to get it done asap?

[hawkward]

No date yet, but probably by mid October. I have a few hoops to jump through first for insurance and time to get things settled at work. I’ll have to hand off some projects that I’m bummed about.

Knowing what it is and what everything looks like kind of freaks me out. It does feel hopeful though.

[byjove]

hawkward that sounds so intense. I’m hopeful it will be life changing for you ❤️

[wedding]

I’m sorry hawkward. That sounds scary but hopefully it will fix everything and you will be a new woman.

[senneth]

miawallace I’ll keep my fingers crossed you go into remission for POTS. Note: All this is anecdotal, and I use identity first language unless someone asks me to use people first to describe them.

PreCOVID, most patients fell into three categories:
1) comorbid EDS dx (may or may not also have an autoimmune dx)
2) comorbid autoimmune dx with viral triggered POTS
3) healthy with viral triggered POTS

The EDS ppl sometimes have severity come and go, but almost never have full remission - lucky ppl may get back to subclinical for a while.

But a decent percentage of the autoimmune ppl who don’t have EDS DO go into full remission after 3-5 years, and a decent amount of the autoimmune ppl who don’t fully recover get to and stay subclinical after a few years.

Many of the previously healthy women who don’t have undiagnosed EDS or autoimmune dx completely recover after a few years, although they seem more likely to be have POTS triggered again by a virus than the general population.

It will be interesting to see if the COVID triggered POTS cases have the same recovery rate. PreCOVID, mono seemed to trigger it most often, but flu triggered a noticeable amount, and over the years I saw ppl who were triggered by SO MANY viruses - even the common cold. Probable RSV triggered a decent amount of cases, but the immune compromised people were usually the only ones who had confirmed positive RSV - it was usually their baby or toddler had RSV, then they got sick with RAV symptoms.

[senneth]

hawkward I’m so sorry. I hope the insurance approval process is smooth.

Have any of your drs ever discussed alpha lipoic acid with you? I don’t think there’s research on it helping with neuropathy symptoms caused by spinal cord injuries or B12 deficiency (or at least there wasn’t research on those when they told me to trial it), but there’s research studies on using it for diabetic peripheral neuropathy and the local oncologists rx it when they give some chemotherapy drugs known to frequently cause neuropathy. It is NOT a fix, but it makes a noticeable difference for me in how much the neuropathy bothers me. It can drop your blood sugar, it’s unregulated because it’s an OTC supplement, and I wouldn’t want to trial it in the weeks/months before a planned surgery, but it might be worth asking about after you recover from the surgery. Again - NOT a fix, and NOT a substitute for treatment. But it does make my skin in the areas with significant neuropathy feel less like it’s on fire when it’s touched.

[senneth]

It’s been a rough year for me health wise - I’m making solid progress, but it’s been more than a year since the car wreck and I’m looking at at least another 2 years of rehab to hopefully get back a decent amount of the things I lost.

On the bright side, nurtec is still working really well as a preventative for my migraines.

[hawkward]

senneth, I haven’t tried it, but it’s definitely worth asking about. I know I have quite a few patients taking it.

DS2 is doing amazingly well right now, by the way. Thank you for always having time for me to vent or brainstorm about him. We found a drug/therapy combo that works well, and we pick up his puppy next weekend. The plan with the trainer is to have a year of them just bonding and then starting actual training next summer. The goal is for the pup to recognize POTs but also provide heavy pressure for autistic and anxiety meltdowns.