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Post by miawallace on Aug 19, 2024 11:06:57 GMT -6
senneth thank you so much for your response. I think I’m #2 of those 3 categories you mentioned. Viruses kick my ass all the time. I get the post viral drama every single time. My doctor mentioned a connection with pots and MCAS but she is deferring for the cardiologist for all that. There’s a lot of crossover with all that so the diagnosis can be both or just 1. The limbo is great. 🤪
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byjove
Ruby
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Post by byjove on Aug 23, 2024 6:52:08 GMT -6
About a week ago a bad flare started, I would say out of the blue, but tbh I had this feeling coming on that I was on borrowed time for feeling good. I was able to get in to the rheum yesterday and she started me on prednisone, which usually helps so hopefully I'll start turning around soon. It's literally the worst my hands have ever felt and I could barely grip the steering wheel to drive to my appt. It's possibly I haven't been on the orencia enough for it to be really kicking in and whatever holdover effects I had from the rinvoq are gone. The doctor ran labs yesterday and I came back slightly anemic, which is new for me, so I'm wondering if this med really isn't a good fit. I feel like I'm moving through water today. Trying to power through until the meds kick in!
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byjove
Ruby
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Post by byjove on Aug 23, 2024 6:54:16 GMT -6
miawallace, all of this stuff is definitely related. I was diagnosed with POTS as a child, though I seem to have grown out of it? I was told to eat more salt and I've always had quite low blood pressure. I'm also hypermobile. My DD2 has FPIES (type of food allergy) that seems to often go with MCAS and moms with EDS- which I think I probably have, but not up for that diagnosis journey.
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Post by mothafuckinteatime on Aug 23, 2024 10:27:42 GMT -6
[mention]miawallace [/mention] MCAS was a surprise diagnosis when they were investigating EDS. I was dx’d hypermobile, but didn’t know of a doctor who specializes in EDS in my area. When I finally found one, I complained about my asthma being really hard to control over the last 6 months or so (as in, went from using my rescue inhaler 1x a month to 3-4x a day with no relief). My regular doctor just kept switching my inhalers up and nothing worked. The EDS doctor asked me some more questions around my allergies (issues drinking red wine, overreacting to seasonal allergens, constant headaches, skin writing, itching) and determined I likely had MCAS. She prescribed famotidine and singulair to help get things back in order, and they’ve been really helpful. My asthma at least feels better controlled, which is nice.
My EDS dr doesn’t feel strongly about doing the MCAS testing because you essentially have to be in a flare state to test positive for MCAS. Since the rx’s are working for now she said a clinical dx is sufficient unless I really want to get testing.
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Post by flymetothemoon on Aug 25, 2024 21:05:22 GMT -6
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. Hi there, fellow EDS/POTS/MCAS checking in. I took the summer off but didn't want to not respond. LMNT salts, LDN, breztri for breathing, and a combo of zyrtec and pepcid have made a significant improvement in the trifecta for me. I'm about 6 months ahead of you on diagnosis and happy to answer any questions or commiserate if you need. |
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Post by mothafuckinteatime on Aug 25, 2024 21:06:13 GMT -6
What are Ldn and bretzi?
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Post by flymetothemoon on Aug 25, 2024 21:11:20 GMT -6
LDN is low dose naltrexone. I had an option to either do beta blockers to improve my heart rate so I could exercise more with EDS or LDN to reduce overall inflammation to ease pain. I have a heart condition so I didn't want to do beta blockers but the LDN has dramatically improved my overall inflammation, muscle, and joint soreness and I can operate like normal now (even getting back to strength workouts) with less lay in bed because I can't function days. Breztri is an inhaler because my mcas spiked in May and I was having a lot of trouble breathing but nothing came up in respiratory allergy testing and my baseline ige was almost zero. We've added sodium cromolyn by nebulizer for when I'm really having trouble with the mcas but that is not something I do consistently. |
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AmyG
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Post by AmyG on Aug 26, 2024 17:34:07 GMT -6
So many EDS and Pots and MCAS and I probably got the abbreviations wrong
and I'm not tagging cause there's so many to tag. OMG
but I'm so sorry this is effecting so many peoples.
Let's hope you get a treatment that works, but so many variables it seems
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AmyG
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Post by AmyG on Aug 26, 2024 17:36:49 GMT -6
byjove, are your hands feeling any better? hoping your flare settles with some steroids gosh it seems everyone has an inflamed body that needs some prednisone to calm it down.
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AmyG
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Post by AmyG on Aug 26, 2024 17:45:24 GMT -6
Not sure what to say about me right now.
I'm in a dumps a bit and anxiety is high.
So you know that pelvic floor dysfunction I have?
GYN specialist did Botox in 10 pelvic floor muscles under anesthesia
Got notified that the anesthesiologist did not use
The standard of care infection disease practices.
From Nov 23 to April 2024. My procedure was Mar 1 2024
So I may have been exposed to HIV or Hep B or Hep C.
Waiting for the results of my bloodtest last week
Hope I don't have to wait until the Women's Clinic's corporate Risk Management
gets the results and calls me.
that might be another week or more.
Like I wanna sue for this but not even sure where to begin on that thought
and my mind goes to who else have I potentially exposed?
Goddamned it.
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AmyG
Ruby
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Post by AmyG on Aug 26, 2024 17:49:02 GMT -6
And for that procedure
The Women's clinic is still fighting with my insurance
because insurance says a pre-auth was not done
Even though they told me it was pre auth.
so that's a difference of the women's clinic good faith quote of $399,
ins says it would have covered to leave me owing $1499
and the women's clinic billable of $3500
ins says I can't appeal cause the clinic is at fault.
So women's clinic has appealed a few different ways.
they got it preauth as if procedure was gonna be in the future and it was pre authorized
At least anesthesiologist office hasn't billed yet.....
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wedding
Emerald
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Post by wedding on Aug 28, 2024 15:55:59 GMT -6
Wow AmyG! That’s awful! I hope your results are clear. Certainly after this they have to cut the crap with the bill, right? |
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wedding
Emerald
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Post by wedding on Aug 28, 2024 16:02:49 GMT -6
I had to have an HS cyst removed last week and due to the location it was full anesthesia. The stress on my body’s caused my new eczema to flare all over my hands and arms. I’m also pretty certain I’m allergic to the internal sutures. I had the same burning pain when I had one removed last year and eventually a suture rose to the surface. The Dr removed it and I got better in a couple days. My Dr this time tried a different suture but I’m having the same symptoms. There’s nothing I can do at this point. I’m hoping the culprit pokes out like last time. I’ve since learned that suture allergies are common in those with HS. 😤
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AmyG
Ruby
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Post by AmyG on Aug 28, 2024 16:51:12 GMT -6
Wow AmyG ! That’s awful! I hope your results are clear. Certainly after this they have to cut the crap with the bill, right? Still waiting on results. taps foot anxiously. I should be able to sue them just for the sheer amount of anxiety meds I have had to take this week+ Anxiety was high starting when I got the informed delivery thing saying there was a certified letter from them. and then it didn't show up and I had to chase it down Certainly going to ask if they'll cut a deep discount on my bill cause jeeze. They are now on the 6th appeal on their part. |
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hawkward
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Post by hawkward on Aug 28, 2024 19:55:57 GMT -6
Oh my gosh, AmyG. That is beyond stressful. Are they stand alone or attached to a facility? Is there a patient advocate to go to? |
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AmyG
Ruby
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Post by AmyG on Aug 28, 2024 20:23:49 GMT -6
Oh my gosh, AmyG. That is beyond stressful. Are they stand alone or attached to a facility? Is there a patient advocate to go to? They don't want me to talk to anyone aside from their risk management or I can talk to one of their nurses. They are attached to a hospital, basically outpatient women's services across the street from hospital. They are clear it was a contracted anesthesiologist not one of their employees. I have a list of questions I'd like answers to that I'll ask when they call with my results. Let's just say I wanna burn it down but my anxiety is limiting what I'll actually do. |
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AmyG
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Post by AmyG on Aug 31, 2024 12:20:54 GMT -6
Still waiting test results
Anxiety definitely still thu the roof.
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byjove
Ruby
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Post by byjove on Sept 1, 2024 13:48:00 GMT -6
AmyG I hope you hear something soon. FX
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byjove
Ruby
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Post by byjove on Sept 1, 2024 13:49:00 GMT -6
This flare is still kicking my butt 👎👎
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AmyG
Ruby
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Post by AmyG on Sept 1, 2024 14:44:57 GMT -6
AmyG I hope you hear something soon. FX Tuesday-after the holiday- I'm going to be making some mad phone calls. Gosh they told me in office to expect 3-5 days max. but nope not yet. taps foot chews rest of fingernails off has panic attack and runs out of xanax arg |
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joy
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Post by joy on Sept 3, 2024 9:52:55 GMT -6
Okay. I am in a place and I only sort of understand how I got here.
Background: I’ve had many headaches all my life that became exclusively migraines by college (~2000). The migraines only increased in intensity over the years. I knew my triggers (alcohol, overheating, exertion) so I avoided them. In my late 20s, I started getting migraines with no discernible trigger and they increased in frequency. After I had my daughter in 2016, I only got migraines from no discernible trigger and they were at a constant 4-6/month.
I tried all. the. things. Magnesium, more water, supplements, exercise, diet, etc. I then went on all. the. meds. Imitrex, Aimovig, topomax, nadalol, ubrelvy, Emgality, Ajovy, nurtec. I also tried outside the box things like acupuncture and posture adjusters.
Desperate, I started PT about a year ago. We focused on my neck and upper chest area for stretching and strengthening. I was mired in 4-6 migraines/month for 5 months after starting. I really blamed myself for my poor posture, weak upper body, incorrect breathing, I DON’T KNOW.
My PT, also desperate, asked questions over the time together about different areas of my life. He pointed out that I should do pelvic PT to work on my bladder so I could get better sleep. I said that was suggested to me back before covid! I forgot! So, I went to the pelvic PT who fixed my bladder (!!!!!!). Amazing. RECOMMEND.
But, you know, she didn’t fix my migraines so back to PT for that. The PT seemed like it helped but also maybe not. Ugh, I was feeling defeated. My PT was also defeated. We parted ways.
Somewhere in my reading, I decided that I needed to strength my core. My daughter’s dance class imploded and the dance studio became a Pilates studio. I started Pilates on the reformers. No help. I moved to mat Pilates when the reformer studio closed. No help.
I decided it was time to stretch out my entire body. I started going to a weekly, one hour, exclusively stretching class at my Pilates studio. I continued weekly mat Pilates focused on my core. I cleaned up my diet (as much as I could).
GUYS. I had one migraine in July and one in August. What is even happening. It wasn’t the core strengthening alone and it wasn’t the stretching alone. Something about the combo opening something up. I keep doing both religiously. I’m still on Ajovy.
I was completely tempted to have a glass of wine on my birthday this weekend just to see how it would go. Soon. Maybe.
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Eagles
Opal
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Post by Eagles on Sept 3, 2024 10:30:35 GMT -6
Okay. I am in a place and I only sort of understand how I got here. Background: I’ve had many headaches all my life that became exclusively migraines by college (~2000). The migraines only increased in intensity over the years. I knew my triggers (alcohol, overheating, exertion) so I avoided them. In my late 20s, I started getting migraines with no discernible trigger and they increased in frequency. After I had my daughter in 2016, I only got migraines from no discernible trigger and they were at a constant 4-6/month. I tried all. the. things. Magnesium, more water, supplements, exercise, diet, etc. I then went on all. the. meds. Imitrex, Aimovig, topomax, nadalol, ubrelvy, Emgality, Ajovy, nurtec. I also tried outside the box things like acupuncture and posture adjusters. Desperate, I started PT about a year ago. We focused on my neck and upper chest area for stretching and strengthening. I was mired in 4-6 migraines/month for 5 months after starting. I really blamed myself for my poor posture, weak upper body, incorrect breathing, I DON’T KNOW. My PT, also desperate, asked questions over the time together about different areas of my life. He pointed out that I should do pelvic PT to work on my bladder so I could get better sleep. I said that was suggested to me back before covid! I forgot! So, I went to the pelvic PT who fixed my bladder (!!!!!!). Amazing. RECOMMEND. But, you know, she didn’t fix my migraines so back to PT for that. The PT seemed like it helped but also maybe not. Ugh, I was feeling defeated. My PT was also defeated. We parted ways. Somewhere in my reading, I decided that I needed to strength my core. My daughter’s dance class imploded and the dance studio became a Pilates studio. I started Pilates on the reformers. No help. I moved to mat Pilates when the reformer studio closed. No help. I decided it was time to stretch out my entire body. I started going to a weekly, one hour, exclusively stretching class at my Pilates studio. I continued weekly mat Pilates focused on my core. I cleaned up my diet (as much as I could). GUYS. I had one migraine in July and one in August. What is even happening. It wasn’t the core strengthening alone and it wasn’t the stretching alone. Something about the combo opening something up. I keep doing both religiously. I’m still on Ajovy. I was completely tempted to have a glass of wine on my birthday this weekend just to see how it would go. Soon. Maybe. I am so completely thrilled for you, this is amazing!!! |
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hawkward
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Post by hawkward on Sept 4, 2024 14:55:10 GMT -6
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hawkward
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Post by hawkward on Sept 4, 2024 14:56:41 GMT -6
AmyG even if it’s a contract, they’re ON CONTRACT. Raise hell for some follow up care.
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hawkward
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Post by hawkward on Sept 4, 2024 15:00:31 GMT -6
PT is kicking my ass. Numbness is much worse in my feet now and the pain in my actual back is almost constant. Tomorrow is session 3/6, so hopefully I’m a month out from surgery now.
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Eagles
Opal
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Post by Eagles on Sept 4, 2024 16:47:37 GMT -6
PT is kicking my ass. Numbness is much worse in my feet now and the pain in my actual back is almost constant. Tomorrow is session 3/6, so hopefully I’m a month out from surgery now. I'm so sorry. I hope the surgery is soon and magically life changing! (I got epidural #3 this morning) |
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hawkward
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Post by hawkward on Sept 4, 2024 17:16:11 GMT -6
PT is kicking my ass. Numbness is much worse in my feet now and the pain in my actual back is almost constant. Tomorrow is session 3/6, so hopefully I’m a month out from surgery now. I'm so sorry. I hope the surgery is soon and magically life changing! (I got epidural #3 this morning) 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. |
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Eagles
Opal
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Post by Eagles on Sept 4, 2024 19:35:03 GMT -6
I'm so sorry. I hope the surgery is soon and magically life changing! (I got epidural #3 this morning) 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. |
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hawkward
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Post by hawkward on Sept 4, 2024 19:56:03 GMT -6
Eagles I could have written that exactly. I have one perc that I still have from a flare earlier this year (and can’t take NSAIDs plus lyrica stopped working). It’s like I keep it knowing I *could* take it if I was desperate… I deal with pain meds all day long. They certainly have a time and place that we (as a society) are neglecting in response to the opioid crisis.
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Eagles
Opal
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Post by Eagles on Sept 5, 2024 5:00:51 GMT -6
Eagles I could have written that exactly. I have one perc that I still have from a flare earlier this year (and can’t take NSAIDs plus lyrica stopped working). It’s like I keep it knowing I *could* take it if I was desperate… I deal with pain meds all day long. They certainly have a time and place that we (as a society) are neglecting in response to the opioid crisis. Big hugs in solidarity. We're over here like "please, our spines are broken, may we please have a tiny bit of relief?" |
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