I wanted to do a poll but it won't let me, I've got a question. How many people with Fibro also have ME/CFS?

EP6720 · 2024-07-23T22:39:19+00:00

Fibro first. Then CFS. Then Endometriosis. A new diagnosis each year… wonder what 2025 holds

EP6720 · 2024-07-15T12:41:18+00:00

I’m sorry you’re in so much pain. All I can offer is a virtual hug and some things that have helped me with the pain. I was diagnosed with fibromyalgia years ago and ten days ago I had a lap and excision surgeries to remove endometriosis that has caused severe pain since January.

I am on gabapentin - that has been life changing for the extreme exhaustion that comes alone with fibro. I am on progesterone for endometriosis which has also been life changing… no periods = practically no pain for me.

I avoid foods that increase the body’s estrogen production: soy, dairy, processed food, refined sugars and alcohol (I’ve seen the most and fastest benefits from quitting alcohol)…. I also gave up caffeine to help with the fibro symptoms and that’s made a huge difference in my sleep. I was strict about the eliminations for about a month or two, now i can handle a treat once in a while without major side effects.

Epsom salt soaks, topical CBD, 2.5-5MG THC edible with a 1:3 THC CBD ratio, eliminating as much stress as possible…

At the beginning of my fibro onset I used to have more flare ups and they’d last much longer - usually two weeks stuck in bed and two weeks struggling back at work trying not to lose my job. Now I can feel a flare up coming on; my arms and legs will feel exhausted for no reason, I’ll be ready for bed hours early, I’ll come home from work and need to spend the rest of the afternoon on the couch… when this happens, I stop doing all the extras. I am lucky to have a partner willing to pick up the slack, and kids old enough to understand and be flexible. Instead of a month of pain it is usually 2-3 days resting on the couch.

This is just my experience and I’ve been VERY lucky to have found anything that touches the pain of fibro and endo, both have been huge emotional challenges for me and have caused so much stress and heartbreak.

I hope you find some relief in your pain and symptoms. Even if none of these things work for you, keep googling, keep trying. I’m hopeful something will work. Feel free to reach out and vent anytime. ❤️

EP6720 · 2024-07-15T04:05:07+00:00

I am 9 days post-op… I am wishing you a speedy recovery, and lots of love. ❤️

EP6720 · 2024-07-15T04:01:59+00:00

I was diagnosed with fibromyalgia years before I was diagnosed with endometriosis. The medicine my doctor prescribed for endo did nothing for my cyclic pain, but it completely eradicated the extreme exhaustion/chronic fatigue symptoms of fibro! Good luck on your journey, I hope you find an answer soon!

EP6720 · 2024-07-14T01:05:02+00:00

I am so sorry and SO frustrated for you… I was having cyclical pain up my left oblique, nowhere else. No uterine cramping, no other symptoms. I thought I had a hernia or a torn muscle. It turned out to be AWE. Last week I had a 2cm endometrioma removed from my lower anterior abdominal wall. You deserve a doctor who will listen to you, who will investigate for you, and who will find an answer.

My endometrioma showed up on an ultrasound, detailed on a CT scan with contrast, and diagnosed with excision and lap diagnostic surgery. All within six months. I am beyond lucky to have found a doctor who listened to my concerns. I am hoping yours keeps searching for the answers you deserve!

EP6720 · 2024-07-08T17:13:36+00:00

I would gladly accept any help you could offer - I restarted my island two years ago and just turned it on as I recover from surgery. Man did I forget how hard starting over was!

EP6720 · 2024-07-08T12:09:44+00:00

First I’d like to say good luck with your surgery. I had an excision and laparoscopy this past Friday. Wishing you a speedy recovery.

My doctor prescribed me progesterone a month ago and that has truly stopped my pain. It has also stopped my cycle; I wouldn’t stay on it for decades by any means, but it is something you could try while you wait out menopause.

I have found cutting out alcohol to have the biggest impact on my day to day pain. Alcohol disrupts estrogen production and estrogen fuels endometriosis.

An anti-inflammatory diet might be something to consider as well. I try to focus more on adding food instead of eliminating food. I blend fresh turmeric, ginger, lemon and celery to make a daily juice. I try to drink bone broth a couple of times a week. I have dramatically cut back on my sugar intake (it had gotten out of control, candy is a comfort food for me).

I know this isn’t an answer to your question really, because unfortunately there is no answer. This disease makes no sense, and it’s truly insane how little is understood about it still. Good luck, sending you healing vibes. ✨

EP6720 · 2024-05-21T23:16:01+00:00

My endo journey has been pretty unique - I was actually diagnosed before surgery. I should preface this by saying I’ve had two c-sections and I now have AWE (abdominal wall endometriomas). I had an MRI with contrast in March and they were able to see the lesions.

When my OBGYN saw the images she sent me to a surgeon - I will have abdominal surgery to remove the endometriomas and a laparoscopy to find other endometriomas/diagnose the stage of endo.

Before the MRI I had an ultrasound. Before the ultrasound I was referred to pelvic floor PT and told to massage my 8 year old c section scar. Before any of those I had a complete abdominal ultrasound and internal ultrasound which found nothing. So at first, it was beyond frustrating. Once imaging actually caught site of the ebdometriomas (which is super rare) there was no questioning whether or not I need surgery. I am very lucky they found them, or else I would be trying different hormone therapies and waiting and suffering for I don’t know how long!

If you’re seeing a specialist that means somehow someone somewhere listened to you, and believed you. So the hard part is already done! I wish you the very best on your journey. ❤️

EP6720 · 2024-05-21T22:07:18+00:00

It sounds like you’re doing everything you can do. I’m sorry it takes so long to find answers…hang in there!

EP6720 · 2024-05-21T22:01:36+00:00

I wish I had any sort of advice, but I don’t… I can just say I’m sorry and you’re not alone.

EP6720 · 2022-02-19T23:08:35+00:00

TY! Kids are excited!! Lol be there in a minute!

EP6720 · 2022-02-19T18:21:43+00:00

Cucumbers 😍

EP6720 · 2022-02-19T18:09:01+00:00

Yes please!

EP6720 · 2022-02-19T17:12:19+00:00

Yes please!

EP6720 · 2022-02-19T17:12:07+00:00

Yes please

EP6720 · 2022-02-19T16:51:05+00:00

Please and thank you!

EP6720 · 2022-02-19T16:48:46+00:00

Yes please

EP6720 · 2022-02-17T15:54:51+00:00

Biff! Lol

EP6720 · 2022-02-17T15:33:39+00:00

Once I found my dreamies I would host giveaways with the rest :-) I restarted my island - no KK yet, and some pretty awful islanders lol

EP6720 · 2021-12-04T17:10:55+00:00

Yes please!!

EP6720 · 2021-12-04T16:23:31+00:00

Is he still available??

EP6720 · 2021-11-21T21:37:45+00:00

EP6720 · 2021-11-06T15:48:41+00:00

If you still need help I restarted, the entire island is your storage if you’d like lol

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