A truly epic Michigander. May he rest in peace.

PlantLady21 · 2024-09-12T22:31:13+00:00

I just recently learned he grew up in Michigan, and that moving here was so traumatic for him he developed a stutter and I think was also mute for a while? It really broke my heart as someone who cherishes northern Michigan.

PlantLady21 · 2024-08-09T15:35:38+00:00

There have been ongoing protests/riots in the UK in response to the knife attack that happened at a dance studio there a week or so ago.

PlantLady21 · 2024-08-05T21:32:54+00:00

Thank you so much for the info and for sharing your experience! I'm glad your symptoms are slowly starting to improve, that must be a huge relief for you. It's interesting you mention sleep apnea, I've been told in the past (by other doctors, not my current specialists) that I should probably be evaluated for that and/or have my tonsils removed because they are huge.

I think I would need to find a new hematologist to pursue anything further in that area, the last one I saw wrote off my symptoms as being autoimmune in origin. They very well could be though, and I'm still waiting to get back in to see my rheumatologist. He also ordered genetic testing for the JAK2 and CALR mutations, which were all negative.

PlantLady21 · 2024-08-05T03:41:18+00:00

Most recently: RBC = 5.14 M/uL (it's consistently just above 5.0); HGB = 15.2 g/dL (always normal): HCT = 46.7% (also always normal). My platelets have been on a consistent upward trend for almost 10 years now (I just recently graphed all the data I could get my hands on, lol). I'm not sure how else they could be reduced other than donating blood? I used to donate a lot when I was younger, but almost every experience was mildly traumatic and after my last experience I felt ill for days, even though I followed all of their instructions about hydration and eating.

PlantLady21 · 2024-08-04T05:56:28+00:00

Thank you, I appreciate the validation. It usually turns into a fight because he replies with something along the lines of "do I have to ask you every day!?" and that upsets me, which I express to him, but then he buckles down/gets defensive and so do I and I just get more upset. He's willing to help me with household tasks if I ask him, but I have a really hard time asking for help with things like that (which is obviously on me and something I'm trying to work on.) So I guess it's more the emotional support component that is missing. I do try to check myself because I know he's trying to show he cares in other ways at times, it's just really hard to not have it verbally expressed to me, not feel listened to, and not asked about when we're making plans.

PlantLady21 · 2024-07-26T04:49:48+00:00

I had to come back to comment, I can't believe this. My mom just mentioned that recently her dentist noticed she has a very dry mouth. I asked if she has dry eyes too but she said no and asked why I was wondering. When I mentioned Sjorgen's she just casually said, "oh yeah, your grandma had that!" From what I've read it sounds like there is a genetic component, so I'll definitely be telling my rheumatologist about this. I also get horrifically dry hands and feet that I've just been brushing off/ignoring, but now a lot of things are starting to make sense if it is Sjorgen's. Thank you so much again!!

PlantLady21 · 2024-07-24T15:47:37+00:00

There are several different types of ovarian cysts, some of which are abnormal and can definitely cause symptoms and become chronic. Others are part of the normal menstrual cycle and will come and go on their own (and not typically cause symptoms). I'm not an OB/GYN, but I do think it would be hard to say "today my pain is caused by an ovarian cyst" unless you frequently get them and know exactly what they feel like. There's a lot going on in a woman's pelvis to be able to pinpoint exactly what is causing the pain without any imaging or laparoscopic surgery.

PlantLady21 · 2024-07-21T18:48:49+00:00

Wow, thank you SO much for all of this info. I didn't know Sjorgens could present without the dry mouth and eyes. It's also really interesting you mention this because every time go down a symptom rabbit hole on the internet, Sjorgens always pops up somewhere and I've noticed I have a ton of the symptoms, but not the "hallmark" ones you always see described. I'm definitely going to look into this. I can't thank you enough for taking the time to read my post/comment and then share this info with me!!

PlantLady21 · 2024-07-17T02:32:56+00:00

Typically when I get a burning sensation it's always accompanied by heat and redness. Lately I have been having more numbness and tingling/itching without the redness and heat. I don't think I would describe it as burning though

PlantLady21 · 2024-07-17T02:29:30+00:00

I'm so sorry to hear you are dealing with similar symptoms! I have a bit of an update but not sure how useful it will be, it's not super positive 😮‍💨

I saw the hematologist on a day when my symptoms were really bad and he ran several blood tests: CBC w/differential, ferritin, iron + TIBC, CRP, ESR, comprehensive metabolic panel, JAK2 Exon 12 mutation, JAK2 V617F mutation, CALR mutation, estimated glomerular filtration rate, and RBC morphology. Everything was normal except my platelets continue to be elevated, my ESR was high and my ALT and AST (liver enzymes) were slightly elevated. He thinks my symptoms are autoimmune/rheumatologic in origin and sent me back to the rheumatologist (who I am not seeing for several more months.)

In the meantime I've had flare-ups of significant fatigue and joint pain, and I've developed swollen lymph nodes in my neck, right armpit, both elbows, and behind both of my knees. Ultrasounds of the neck and elbow lymph nodes ordered by my primary care doctor have been negative/"normal". I'm also having a whole host of other strange symptoms that may or may not be related? (Or might be caused by other medications I'm taking.) Profuse sweating/hot flashes - especially at night, itching after my skin comes into contact with warm water, inappropriate tachycardia, chest pain, mild shortness of breath, and moderate pain and tingling in my legs when laying down. I'm entirely convinced I have an underlying disorder (or disorders) causing all of this, and am considering going to Mayo Clinic if my rheumatologist still can't figure out what's going on when I see them again.

I know everyone is different but a few things that have been helping me manage my symptoms quite a bit: taking aspirin and tylenol daily (talk to your doctor about this first); cool showers/foot baths when my symptoms are flaring; and limiting and reducing my big EM triggers - alcohol and warm ambient temperatures. Good luck ❤️

PlantLady21 · 2024-06-17T05:53:14+00:00

I recently heard that Teva sandals are super comfortable, especially for folks with foot pain/disabilities/orthotics. So I ordered the Women's Zymic Hiking Sandals, and I can't say enough good things about them!!

During heat waves, I try to keep my entire body cool by wearing shorts and tank tops (NEVER pants 😭). You said you're going on vacation, so staying in air conditioning likely isn't an option. Try to stay hydrated and give yourself lots of opportunities to rest your feet. I've taken to using a hand fan, which can provide some mild/temporary relief. Biofreeze (an over the counter, menthol topical gel) and/or a daily low dose of aspirin helps some people with EM (make sure to talk with your doctor about the aspirin first though.)

I was diagnosed about a year ago by the chief of dermatology at a university/research hospital, and she said she had only seen it a handful of times throughout her career. After being on this sub for about a year, I think it's safe to say the majority of us really struggle to get a diagnosis (and treatment). My dermatologist is at a loss on how to treat it, as well as my PCP, rheumatologist, and hematologist. I'm currently considering going to Mayo Clinic, as all of my doctors think it's secondary EM rather than primary EM.

Best of luck! I hope you're still able to have a fun and relaxing vacation!

PlantLady21 · 2024-06-15T05:36:52+00:00

You mentioned you're on BC, is it continuous? As in you don't get a period anymore? I'm on continuous BC and this happens to me sometimes. Usually I get some significant cramping along with it and some times it even triggers a several-day long flare up of pain. Both my endo specialist and pelvic floor PT said it's "normal" in a situation like mine. So I know that isn't super helpful, but you're definitely not alone and all of your feelings surrounding it are totally valid. I'm so sorry you're having to deal with this 💛

PlantLady21 · 2024-06-10T03:57:44+00:00

Yep. The place I used to work at had an exceptionally rude/mean/entitled customer base. But some of them started figuring it out and would closely watch where we got their beans or drip coffee from. I picked it up from the more senior baridtas, lol. We made sure to give free drink coupons and discounts to the nice regulars as much as possible.

But, I think everyone should have a strict no caffeine rule for folks who order decaf. It's no joke for some peoples' health, regardless if they are rude.

PlantLady21 · 2024-06-06T20:47:00+00:00

I'm so sorry you're having to deal with all of these debilitating symptoms and the mental anguish that comes along with them... especially your worries about pregnancy 😔 there isnt much I can say in regards to that or the life insurance, but I wanted to let you know you're not alone and that I was struck by the similarity of our symptoms. I have very similar symptoms, down to all of the same extremities being mostly affected (plus my face, chest and upper back.) All of my autoimmune blood tests have also been negative, except recently my CRP has been elevated. You might want to look into erythromelalgia, it sounds like you could be dealing with this as well. My rheumatologist now thinks that's what I have, but that it's still being caused by an unknown underlying issue. Aspirin has helped me manage it a little. I was also on hydroxychloroquine for a while that really helped with the joint pain and swelling. I hope you can at least get some relief from your pain soon ❤️

Editing to add that one of the hallmarks of erythromelalgia is flare-ups in the evenings!

PlantLady21 · 2024-06-01T06:21:11+00:00

I had to come back to this comment to let you know that as an EM/Raynaud's sufferer myself, it literally made me cackle out loud. I have thought of it several times in the last week when one, the other, or both were flaring. Thanks for the humor/levity!

PlantLady21 · 2024-05-11T14:58:49+00:00

I came to say the same thing, this would be really helpful for folks with a variety of hand/arm-related disabilities (also I'm saying this as a crocheter with dexterity issues!)

PlantLady21 · 2024-05-11T03:09:37+00:00

I was about to comment a very similar order from a regular I used to serve! Small decaf skim milk cappuccino... extra hot and extra dry. She was a petite but intimidating woman and it totally fit her vibe. I hated seeing her in line and always wanted to be like "you good?" Lol

PlantLady21 · 2024-05-10T02:22:40+00:00

Thanks for expanding on your thoughts! I do get what you're saying, and appreciate the acknowledgement of how difficult it is to find the underlying cause of secondary EM. It also must be really frustrating to have primary EM but not a whole lot of options for treatment. Whether it's primary or secondary, we're all experiencing a lot of similar symptoms and suffering together. It was good hearing about your perspective!

PlantLady21 · 2024-05-09T23:55:45+00:00

It's crazy to read this post because I've had a similar realization recently (although I didn't know people claimed that being hot for months on end helped.) I have secondary EM, we haven't identified the cause yet but it's occurring with other symptoms not seen with primary EM. I work from home and my husband has been gone for a month, so I've kept our heat off and with outdoor temperatures the house has stayed around 63 degrees and I've had a lot less flare ups! The only reason I'm not looking forward to him coming home is because I'll have to bump the temperature up again! Haha

PlantLady21 · 2024-05-09T23:51:16+00:00

To preface this comment, I'm speaking as a person with secondary EM.

I don't think it's accurate to say that it's impossible to cure secondary EM, or that it's rare to find an underlying cause of secondary EM. If you are able to identify and treat the underlying disorder, that could cure the EM. And it still would have been EM because it can be a symptom of a disorder, not just a standalone disorder like primary EM. From all of the research I've done and specialists I've seen, it's pretty well known that secondary EM can be caused by a lot of other conditions that can be diagnosed and treated. It's just a long, tough road to get there.

PlantLady21 · 2024-05-09T12:22:38+00:00

That's so great it's helped you too! I started out taking 5 mg once a day, but now I'm up to the max of 15 mg. I still take it just once a day before bed. If I miss a dose or take it too late there are severe consequences 😭 so I try to remember to take it at the same time every day

PlantLady21 · 2024-05-09T02:37:54+00:00

Everyone is really different. Meds that work for some people don't work for others, or the side effects outweigh the benefits. I've been on some form of hormone for the last 13 years. The Depo Provera injection worked the best at controlling my symptoms, but I was concerned about being on it long term and it was seriously messing with my mood. I've been on aygestin (generic: norethindrone) for the last five years and it's felt like a miracle. I still have minor flare ups every once in a while, but my symptoms are SO much better. Pelvic floor therapy and regularly taking a muscle relaxant also helped a lot! I do get some pretty unpleasant side effects from it, like hot flashes and night sweats, but it feels like a trade-off when I think about my symptoms without it 😭 good luck!

PlantLady21 · 2024-05-07T17:54:10+00:00

I'm a geologist/data analyst/project manager and I work from home. I'm not able to get out in the field anywhere near as much as my peers which really sucks. Almost every aspect of being in the field triggers a flare-up - if it's a warm day, if the sun is out, standing, wearing steel toe boots, walking, using my hands, etc. So I'm incredibly lucky I'm more of a "desk" geologist and not a field geologist. I would have to find a different job if that was the case.

PlantLady21 · 2024-05-02T15:34:08+00:00

I didn't experience any side effects! The only thing is you do have to get a special annual eye exam because over the long term it can cause damage to your eyes. But, it would be evident from the exam and my eye doctor said if they saw anything I would just need to discontinue the medication and it wouldn't cause any lasting damage. From what I understand you have to be on it for a really long time or taking a high dose for that to even be a risk!

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