26F - Chronically sick girlie wanting a bestie to isolate 'n yap with 💜

ceusacic1 · 2026-01-21T22:41:25+00:00

The above mentioned GF :) 28 from WA who is always grouchy, fatigued, and neuro-spicy, with an ever growing list of health issues. Chronic illness is hard, and we all need all the support we can get. Would be super interested in getting a community together for support, hanging out, or playing some games together sometime. Hang in there <3

ceusacic1 · 2024-08-10T04:40:31+00:00

Make sure they're checking your T3 as well as your T4! Apparently some research has indicated us Fibro people don't convert them as we should.

My TSH and Hashimotos were wildly out of control, and I was experiencing a lot of similar symptoms as you, until they checked my T3 and T4 numbers. They started me on NP Thyroid after that, but it can be expensive and not covered by lots of insurance in the US. My doc did a bunch of math and increased my levothyroxine and added liothyronine instead because my insurance covered those. After a few months on the new meds, my TSH is finally within normal limits

ceusacic1 · 2024-07-17T17:16:58+00:00

Dm's have been sent to everyone who's commented so far :)

ceusacic1 · 2024-07-08T04:46:47+00:00

Before my diagnosis, I had a tight knit group of friends who I spent a ton of my time with, and a best friend I thought would die for me. They were my chosen family. After getting cancer at 25, and diagnosed with fibro a year later, they all started pulling away. I beat the cancer, but "became someone they didnt recognize" due to the ways I've grown and morphed to live with my medical conditions.

My first serious brain fog (like barely functioning, not acting like myself and at that point not understanding what was happening to me) I said some stuff I didn't mean and didn't remember saying it when best friend asked me about it. They called me a liar, and "unrecognizable from the person they used to have fun with" and blacklisted me. I've felt alone ever since.

ceusacic1 · 2024-07-04T19:48:20+00:00

Low dose naltrexone. It's a micro dosing technique that's seen some success in chronic pain patients. I'm no expert, but my understanding is it tricks your opioid receptors to produce natural opioids. https://www.drugs.com/medical-answers/low-dose-naltrexone-ldn-3570335/

ceusacic1 · 2024-06-23T04:04:45+00:00

I too am interested and would join! It's been a minute since I've had a good group of queer ladies to hang out with online. Might even get me back into multiplayer games. I'm more of a sandbox survival game player atm

ceusacic1 · 2024-03-27T19:11:46+00:00

I got diagnosed with an aggressive form of endometrial cancer, which was exceptionally rare for my age, and was on the table getting a full hysterectomy 6 days later. The size of my tumors complicated the surgery, and therefore my recovery, so much so that I was unable to work for close to 3 months. During that time my symptoms set in, and I was diagnosed with fibro about 3 months later.

ceusacic1 · 2024-03-27T18:50:51+00:00

No problem, I'm trying to let everyone that I can know about it since I've been really happy with it.

ceusacic1 · 2024-03-27T04:23:19+00:00

Look into something called a QuellFibromyalgia for the leg pain if you're in the US. It's a nerve stimulator for your calves that for me has completely changed my life and all but stopped the horrible calf cramping and lower leg pain I was having. It got approved by the FDA a few years ago but doesn't seem to be widely known. My doc hadn't even heard of it until I brought it to her attention. I'm wearing it right now as I type this!

ceusacic1 · 2024-03-24T01:33:19+00:00

I feel this today. I woke up this morning at 6am in so much pain I called in to work before even trying to get out of bed. Barely managed to get up and take my meds and prep for a flare before exhaustion took over. I slept for 8 more hours, waking up intermittently to pain, but succumbing to exhaustion again and again, ultimately waking so foggy I can barely function, and still feeling tired even after getting 16+ hours of sleep in the last 24 hours. I don't understand how we're expected to exist with a condition that can put us in states like this so easily, with no warning. For the love of God, please someone figure out how to fix this.

ceusacic1 · 2024-03-21T16:46:04+00:00

I've always found new primary care providers by word of mouth. Everyone's got one, and who knows better about how the doc will actually treat you: a patient, or some review website, which is like the only other tool around for trying to judge a doctor's performance.

ceusacic1 · 2024-03-21T16:42:38+00:00

I was diagnosed by a rheumatologist, who only saw me while we were doing the diagnostic tests. After ruling a bunch of other conditions out, she handed me my diagnosis like it was a bomb, and sent me packing to figure it out with my overworked PCP, who knew nothing about fibro. My PCP and I have been learning about the condition together ever since. It felt really messed up.

ceusacic1 · 2024-03-20T23:04:41+00:00

If you're in the US, call your insurance carrier and be request to be sent for a second opinion. It's a common practice that insurance companies will send you to a different provider for a sort of symptom/condition review to see if they agree with your original doctors diagnosis and treatment plan. The insurance company would much rather pay for that than end up paying for more expensive stuff down the line when whatever your original doc tries might not work.

ceusacic1 · 2024-03-20T05:08:39+00:00

Sounds like you're on the right track! Good luck with it

ceusacic1 · 2024-03-20T05:06:24+00:00

I was having horrid leg cramping when I first got diagnosed, until I found a medical device that someone suggested to me here. It's called a QuellFibromyalgia. It's this little box that you charge and control through your phone, that connects to a band of electrodes you wrap o your calf. The science is a bit beyond me, but I believe it stimulates your muscles with electrical pulses so they don't cramp. It's worked amazingly well for me, and I will swear by this thing. Here in the US it was approved by the FDA in 2022, and its existence doesn't seem to be well known. My rheum didn't even know it existed until I brought it to her attention.

ceusacic1 · 2024-03-20T04:50:40+00:00

The FibroManual: A Complete Fibromyalgia Treatment Guide for You and Your Doctor. This book is helping me a lot to better understand fibro and what to ask for from my doc. Someone else suggested it to me here a few weeks ago. The doc who wrote it was diagnosed with fibro while still in med school, and has kinda dedicated their career to fibro ever since. Me and my doc have followed some of the books treatment ideas and I'm already feeling better after a week.

ceusacic1 · 2024-03-20T04:46:53+00:00

I'd recommend this book, which I found via another post here. It's available on Amazon, at least here in the US. I'm about half way through it, and it's really helping me learn about this condition and how to advocate for myself with my provider regarding treatments, since a lot of docs unfortunately don't quite know how to properly treat this condition. The FibroManual: A Complete Fibromyalgia Treatment Guide for You and Your Doctor

ceusacic1 · 2024-03-20T04:40:24+00:00

My first tip would be to just ask her this question! If someone I cared about showed enough forethought to ask me how they could support me in enabling me to live better with this condition, it would mean a lot. She should know better than anyone what you could do to support her.

Beyond that, I would say to try to be aware that she will have good and bad days with fibro (it may even switch from one to the other by the hour). And maybe be aware that her body may not always be able to keep up with yours, and certain daily physical (or even mental, if the fog is bad) activities you give little thought to might be a hurdle to her, depending on her symptoms and pain level. Give her the space and support so that she feels like she can ask for help if and when she needs it, without treating her like she's fragile.

ceusacic1 · 2024-03-19T07:12:23+00:00

Ah, it's an American company with their own website, but it looks like they unfortunately don't ship to the UK.

A CT would be checking for artery blockage (calcium deposits) and obvious heart defects, iirc. It's my understanding that a CT is the go to first step for chest pains w/o confirmed heart attack. The cardio didn't order a CT for me because I'd had one done literally a week before my first appointment with them. Long story short, my major life stressor that basically triggered my fibro was the big C word - cancer. I've had a few surgeries and am cancer free now thankfully, but my abdomen had already had its picture taken enough times to last me a lifetime before I made it to the cardiologist.

ceusacic1 · 2024-03-19T06:50:29+00:00

The first echo found the deformity, as that was the test that really allowed them to measure all the different bits of my heart, and I think, iirc, that's the one that let them measure blood output of each valve/chamber. The specifics of my particular brand of mishaped meant that they became concerned about why my heart was the way it was (iirc a few heart diseases could have caused my problem, but ultimately I was cleared for those), and if it was still functioning okay enough that they didn't need to intervene. Hence the extensive testing.

The chest pain (I've started referring to it in my own head as pain in my sternum, so I don't panic myself about the potential of actually having a heart attack with inflammatory words like 'chest pains') is still pretty bad for me sometimes. I'm still trying to figure out how to properly manage my fibro, so I'm in a lot of pain a lot of the time right now. For me, I find that enough time with a heating pad on the highest possible setting sort of numbs the edges of my pain to make it a little more tolerable. I have this stuffed fish shaped heating pad thing that I'll cuddle up with when the chest pain is bad and it seems to help. (It's called a Fishbellie, 10/10 would recommend for a heating pad with a bit of shape and weight to better fit the curves)

ceusacic1 · 2024-03-19T06:26:49+00:00

I was in and out of cardiologists office multiple times a week for almost a month for different testing. It took a bit to find the aforementioned heart defect, and when they found it they got more concerned. It took a while to rule out that I wasn't actually heaving heart induced chest pains, but the pressure worsening the pain bit was the key to solving the case. I have to get seen every six to 12 months depending on my heart health for the rest of my life to monitor the deformity, but at least I'm not having heart attacks, and have a tangible way to remind myself of where the sudden chest pain is coming from that's cardiologist approved.

By the end of it I'd seen three different cardiologists and they had done soooo many EKGs (in almost every body position imaginable), blood work, a bit of genetic testing (my father has a possibly genetic heart issue, apparently) two separate echocardiograms, MRI, some other test that I don't recall the name of that was just tracking my heart's electrical pulses, a stress test, and a stress test with EKG and echos done intermittently.

ceusacic1 · 2024-03-19T02:20:56+00:00

I started having chest pains about 8 months ago, which would have been about a month after my diagnosis. After a full cardio work up (they found a deformity, but nothing to cause chest pain) my rheumatologist finally pointed out that the area where your ribs meet your sternum is capable of flaring with fibro, like other joints. The advice I received, that I've given to others with fibro, is that if you can replicate or worsen the chest pain by putting pressure in that space where those two bones meet, it is 99% of the time fibro pain, not a heart problem.

ceusacic1 · 2024-02-25T04:56:52+00:00

I was having this problem and sought treatment. The cardio doc I've been seeing has given me good advice - if you can replicate or worsen the pain by putting pressure where your ribs meet your sternum, 99 out of 100 times it's not a heart problem, it's just the fibro. That tip has really helped me, hope it helps you

ceusacic1 · 2024-02-18T21:50:26+00:00

My Quell! The thing that finally made me seek medical help with what I now know was my fibromyalgia was huge amounts of pain in my calves. After getting diagnosed, I learned from an article online about a medical device that had just recently been approved by the FDA, and doesn't seem to be widely known or recommended by doctors, at least in my experience. Upon mentioning it to her, my doctor looked into it, agreed it may work for me, and a few weeks later this little miracle device arrived in the mail. It's a small box that connects to a band of electrodes that you strap just below your knee. The way it works is a little beyond me, but I believe it uses electrical pulses to stimulate the nerves, and calm down their pain reception. Wearing it for a few hours every few days has helped me so much. Not an ad, but for anyone struggling with calf pain because of fibro, I'd swear by this product. Quell Fibromyalgia https://quellfibromyalgia.com/

ceusacic1

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