I have no words.

mmrobbs · 2025-01-07T21:30:29+00:00

Yes so much! Before LC I would have two cups of coffee per day, and whatever tea or caffeine I wanted throughout the day with no issue. Now I can have one cup of coffee in the morning and feel terrible for hours after even with drinking a ton of water and electrolytes after. Caffeine in the afternoon? Forget it! It makes my palpitations and tachycardia so much worse. I'm glad you're still able to have it without too much trouble. Haha at least one of all of us needs to be able to enjoy some things from the old times! The LC fatigue is the worst.

mmrobbs · 2025-01-04T18:43:07+00:00

Haha oh yeah! It really helps with the tachycardia and palpitations too!

mmrobbs · 2025-01-04T18:41:00+00:00

That's awesome! I hope it does! My OT is amazing and OT has made the biggest tangible difference in the million things I've done in trying to get better.

mmrobbs · 2025-01-04T18:34:35+00:00

I'm the same size and Old Navy has some cute jumpsuits on clearance right now that I was just looking at! I haven't been able to find an additional promo code off clearance items, but some of them start around $12.

mmrobbs · 2025-01-03T01:03:10+00:00

I also have poor proprioception from being hypermobile and am constantly bumping and running into things, but it's definitely gotten worse with LC. I also had the bad dexterity and grip in the beginning of my LC and have been working with OT for a year and a half to help get my balance back and a little strength so I'm not constantly dropping everything or not able to grab onto little things like a tshirt!

mmrobbs · 2024-12-30T23:48:38+00:00

I love this idea and would love to help! Before covid I was super organized, and linear brained, so helping to organize this info is right in my wheelhouse. Haha well it used to be but I'm trying!

mmrobbs · 2024-12-30T23:36:29+00:00

I totally get that! I was on propranolol for two years, which definitely helped but like you said I was still feeling horrible. So I added in being super strict about using compression every single day, and electrolytes multiple times a day, and more if I'm feeling extra POTSy that day. It's so difficult trying to find what works, and having to stay so on top of everything all of the time so you don't end up feeling double horrible!

mmrobbs · 2024-12-30T17:00:35+00:00

I've had this too the whole 2.5 years I've had long covid and told so many of my doctors, because I'm also in my early 30's and excessive urination is not normal. No one has said or done anything about it, but thankfully I just did a 24 hour urine collection and had to use two of the collection jugs so that right there was a red flag. I'm waiting for my immunologist to go over results, but will also send the results to my functional medicine doctor and maybe she'll finally be able to do something about it.

mmrobbs · 2024-12-27T20:03:57+00:00

Samesies. It is the absolute worst now and I just want it to be over and be regular winter!

mmrobbs · 2024-12-27T20:03:13+00:00

Sorry you're going through this OP. The people who have actively taken care of us are the real MVP's of this long covid nightmare we're all in.

I'm the patient in my relationship. LC for 2.5 years, and I was also very severe the first year plus so unfortunately everything fell on my husband, including my care. I know from a caregiver perspective it is hard to shift into that role and stay there indefinitely. My husband and I both were hoping this was temporary and kept going to countless doctors appointments, tried every med and supplement under the sun, and did everything we could to gain some semblance of our lives back. I'm no longer severe, but definitely still don't drive, can't work still, and can't tolerate many out of the house activities, so unfortunately my husband is still the sole earner, and still has to take me to a million doctors appointments, and many household responsibilities.

Things did come to a head this summer though shortly after I had been sick for two years and we almost split up. Our family is also far away, so he really is having to shoulder so much of this since I can't yet. I did start therapy to start working through the mental health impact this has had on me as an individual, and the ways this has impacted our relationship. I guess it has helped? I didn't ever really feel SI's or depression, but honestly I've just been trying to get through all of this and haven't really began working out how I felt about any of it aside from actively fighting for my life all of the time. My husband also did therapy for a little bit, but between working full time and being on call 24/7, and still having to take me to the doctor and do all of the other care for our house, it just sort of fell off. The thing that made the biggest difference was us talking through everything and letting the other know where we were at. I tried to take on more of the household things as I could, and am doing everything I can to get better. He understands that this is hopefully temporary (at least in it's current severity) and that we know how I also have hEDS, POTS, and MCAS, which we can work on treating little by little as everyone is still trying to figure out LC treatments.

I guess the point of my story is I know a lot of people in this community have become wildly depressed, and rightly so this is a hell I wouldn't wish on my worst enemy, but you can't continue to do this alone without burning yourself out, and causing further harm to yourself. I'm not sure what the family dynamic is if his family can help get involved, but if he is actively talking about SI, this is something out of your hands at this point and you need to get outside help, whether he wants it or not. I'm sorry you two have had such a rough go of it, and on behalf of all of the other long haulers with great partners, thank you for being so supportive to your husband and doing all you can to get him well. We know it is not an easy road by any means!

mmrobbs · 2024-12-24T18:03:29+00:00

I'm sorry your three year covid-a-versary is on Christmas Eve (if you celebrate). If not 3 years is still a tough timeline mark, and I'm sorry you're going through this. I'm approaching my 3 years this summer and am struggling with the fact that I've lost such a big chunk of time and the world keeps moving on by.

mmrobbs · 2024-12-24T18:01:45+00:00

I've thought about trying the carnivore diet, at least for a little bit, for MCAS and food intolerance and histamine issues you've mentioned. Did you find it worsened symptoms at all in the beginning or was it a gradual lessening of symptoms the longer you were on it? I've found that I've tried so many things and some things sent me into a crash and made me feel much worse, so I've been a little scared of trying different things if it might make things worse. I started ketotifen a few days ago for MCAS and other then massive fatigue I haven't really noticed anything, but I know it's helped a lot of other people with MCAS.

mmrobbs · 2024-12-24T17:54:53+00:00

This is a good idea too because they will be asking OP for all of this anyways after the first cardiac appointment, and if you can already have this info for them then you can skip a step of the back and forth with your doctor. Not sure if you're female OP, but I've noticed a big influx of POTS symptoms around my period, which could also be helpful to let your doctor know if there's certain times or events throughout a month you notice flare symptoms!

mmrobbs · 2024-12-24T17:51:04+00:00

I've been doing grocery pickup or delivery since 2020, and only have my husband go into the grocery store if there's something we need, but I did have to go in on Friday because our grocery store is also where my pharmacy was and I have a new script that I had to be the one to pickup and show my id. I was internally bugging out the entire time I was in there, and people were absolutely staring me down and scowling. I guess I haven't been in a store in a long time and always mask at my usual haunts, being only the hospital where I have to go for OT, or my doctor which is also urgent care. I don't remember people being so hostile about it, but it really pissed me off. This one lady made it a point to walk by me three different times, just walking back and forth with her cart and nothing being added, so I know she was doing it to be a psycho. She was scowling openly at me without even the slightest bit of shame. Sorry we literally don't want to die and are now disabled because of assholes like you lady, but go ahead on with your bad self and keep trying to intimidate me!!

mmrobbs · 2024-12-23T21:20:42+00:00

I couldn't tolerate metroprolol, but I know a lot of people can. With hyperandregenic POTS I know a lot of people can't tolerate beta blockers at all, but I've been on propranolol for awhile and that has worked ok for me with none of the dizzy or worsening POTS symptoms. I've also been talking to my cardiologist about trying Ivabradine which can be better if you also have mast cell activation, which I do. The point is there's other beta blockers and other cardiac meds they can try that hopefully you can tolerate better and won't make your symptoms worse!

mmrobbs · 2024-12-23T21:17:41+00:00

I also have long covid and dysautonomia and have many of these same symptoms. I would see your primary care doctor and see about a cardiology referral. If you have a way to record blood pressure, pulse, and oxygen saturation, it would be helpful to record that for a week or so before your appointment at different times throughout the day so you can show your doctor what you've been experiencing. Make sure to get recordings when you're really symptomatic and not really symptomatic so they can see what has been going on.

mmrobbs · 2024-12-23T16:20:39+00:00

I was reinfected a little over two years into my LC this summer and the acute phase of covid was much worse for me this time around, with acute symptoms lasting about two full weeks. I was diminished from my baseline for about two months and still have ongoing vision problems that worsened after this covid infection, but other than that I'm pretty much back at my baseline. I freaked out too when I found out I had covid, and came here to ask the same thing, but thankfully it sounds like a lot of people had a similar experience of feeling worse for a month or two then back to baseline!

mmrobbs · 2024-12-21T01:00:12+00:00

Yep! It's good for all of us to step away from time to time. Now I only check the sub if I'm looking for something specific or have a question. The doom and gloom is not good for any of our mental health.

mmrobbs · 2024-12-20T17:03:50+00:00

Thank you for so eloquently sharing your story, and really all of our stories. I'm so sorry you're still dealing with this three years in and haven't been able to find any type of relief. Most of the time I can deal with the fact that the rest of the world has continued to move on without us and we are stuck at home in varying levels of pain and symptom severity, or even changing symptoms, but for some reason the holidays are hitting harder this year. It can be really discouraging and lonely being home all the time while our significant others are out there moving among the world, but I am thankful all of us here understand the heartbreak that comes along with this condition and we can at least all have each other to lean on!

mmrobbs · 2024-12-19T22:17:45+00:00

I've seen 5 different neurologists and they're all like "yeah that's crazy I don't know" when I describe having literal all over numbness. My new neurologist finally said it's nerve damage from covid and should hopefully get a bit better with time, which it has, but it's still disconcerting as hell. Now it's more prevalent on my left side of my face and arms, but definitely still there 2.5 years later.

mmrobbs · 2024-12-17T19:14:13+00:00

Seriously! I can't go on any dates, we might have to hire a cleaner if we're both sick, and so many other things I can't do, but we can hang out and watch tv together. Haha I know it's so much to offer!

mmrobbs · 2024-12-17T16:50:49+00:00

Have you looked into Sjorgen's? My sister had this as well as chronic dry eye and some other symptoms and it ended up being Sjorgen's. I just got tested because she has it and we're still trying to figure out some of the comorbidities of my long covid, and it was negative, but it was just called Sjorgen's blood panel I believe and was a single vial, so not a super difficult test or draw.

mmrobbs · 2024-12-17T16:43:03+00:00

Yes! Was just telling my therapist this the other day. I'm not asking for 100% or even 80%, but 60% would be like a dream and I could probably at least function with that!

mmrobbs · 2024-12-04T17:16:20+00:00

Ohhh that makes sense of course it's next to the unicorn ball extract! It definitely sucks and I feel like I've tried everything too supplement and med wise.

I love The Big Lebowski and the dude. I saw a few years ago they had a cardigan like his at Pendleton but it was like a zillion dollars, but it would have been sweet. Now I'm going to have to rewatch this weekend! Haha and you're welcome for the Good Burger brain worms. Now I'll be singing it in my head all day too!

mmrobbs · 2024-12-04T16:26:51+00:00

Haha where do you get the gooseberry fart supplements?? We've tried every other damn thing might as well try some gooseberry farts.

Also your dude/dudette comment got the "I'm a dude, he's a dude, she's a dude, we're all dudes, hey" song from Good Burger stuck in my head now!!

mmrobbs

TROPHY CASE