Hi everyone. I’m making this post out of desperation. 11 months ago I had a beautiful healthy baby. 4 months later I developed extreme fatigue where I can barely function. Cannot leave the house. Its been 7 months now and nothing has changed despite seeing every dr possible and all normal bloodwork. I am becoming very very depressed and worry I will never get better or that I have CFS. I’m not sure what else to do at this point. Thank you.
As someone with ME/CFS, please reach out to others in your same situation. I don't think this subreddit permits linking to other groups, but there are a few on Reddit and elsewhere that are very helpful and encouraging. I'm not a mother, so I will leave that particular advice to someone else who understands navigating motherhood and debilitating fatigue. What I can strongly suggest is this: 1. Talk to your pastor and ask about receiving the Anointing of the Sick. If you do have ME/CFS or another chronic illness, the sacrament can be a great grace. Even if God doesn't heal you physically, the spiritual healing and strength are precisely what your soul needs. 2. Find tangible support. I have moderate-severe ME/CFS, and I would be in a full-time care facility without family and friends to help. Depending on where you live, there might be governmental funds/waivers available to pay people to cook or clean for you. Even casual help is huge for people with this disease. Don't be afraid to ask. Talk to family and friends, reach out to a mom's bible study or other ministries that could help. 3. Find spiritual supports to lean on. My list of saint-friends changes depending on the day, but there are some that I just cannot do without. The Church's Teaching on redemptive suffering is VERY important to me, as is Marian Consecration. 4. Give yourself permission to slow down. Familiarize yourself with pacing and ways you can implement it in your life. If you do have ME/CFS, rest is going to be crucial. You will absolutely have to build in time to rest, ways to slow down, and some things to set aside altogether. With this disease, it is the only proven way (so far) to improve. Some things like help, like various supplements, meds, etc. (For me, the Visible wearable and app, along with weekly IVs for hydration are key). But at its core, this disease demands rest. And in a way, it is a special invitation to enter into the sacred rest of Jesus in the tomb or longing of Our Lady after the Ascension. It is a hard spiritual gift, and one I want to give back most of the time. But Jesus does great things through it if we let Him.
I am praying for you and your family. May God have mercy on you. May He give you answers, and the strength to persevere. And above all, may He be your comfort and peace.
The thing is its so variable. Some days I feel 95% recovered then others I’m so tired. It can also fluctuate hour by hour. Does that sound like not cfs?
It depends. There are various levels of ME/CFS, and also related conditions that can fluctuate in severity like that. When I first got ill, I had great days where I could basically function like normal, and days when I was fully zonked.
The key "marker" of ME/CFS is post-exertional malaise (PEM), which is when you "crash" after doing too much. Because it can take up to a few days after pushing yourself too hard for your body to respond with a "crash", it can sometimes be hard to identify that's what's really going on. Pay very close attention to what you're doing, how your body responds during, and how you feel in the next day or three. If you find you don't experience post-exertional malaise, you can joyfully rule this out.
For some people with it, they can do most things (cooking, cleaning, even brushing their teeth, etc) without crashing as long as they are sitting with their feet up. For others, breathing exercises are key to keeping them regulated and steady.
The biggest problem is that people will push and push for months/years until their body fully cannot anymore. You do NOT want this, for yourself or for your family. That's what I did, and now I'm homebound and bedbound half the time. In case this might be what you have, start pacing so you don't permanently harm your ability to heal. Then you can continue to seek answers in peace. And if, please God, you don't have ME/CFS, no harm done by taking things slowly for a while.
If you suspect you experience PEM, and you are in the States and can afford it, I cannot recommend the Visible wearable strongly enough. It will help you track your activities and your symptoms, identify patterns, and hopefully find answers.
I haven’t identified with pem yet. Do you recommend a good way to test? Is it something I would just have noticed by now?? Also, have you tried brain rewiring? I know its frowned on a lot in the cfs community but chat cpt thinks it could help me.
You don't want to trigger PEM to test it, because it can make those of us with it seriously worse. Instead, it is recommended to get a tracker or journal what you do and how you feel. I didn't notice a pattern naturally; I just knew I could go to work for a day or two and then would have to sleep another day or two before returning. As I got worse, it got more noticeable but I didn't catch it at the beginning. It's also helpful to ask those who know you well. It took my mom pointing out that I always crashed on Mondays to realize my body couldn't handle going to Mass anymore. Without someone else pointing it out, I wouldn't have admitted it to myself.
The problem with CFS/Long Covid/POTS is that the problem is not in our cognitive patterns, so it can't be healed that way. It is a biological (possibly mitochondrial) condition happening across our whole bodies. I can't think my way out of crashing after a normal shower--my body simply cannot handle it anymore.
I genuinely hope you have something else. I'm just a rando on the internet, so I can't say one way or the other. I know doing test after test just to have your labs come back normal is exhausting but eventually you'll find answers. Do you live near someplace that can test your hormone levels (I have POTS, but it's still possible), heavy metals, nutritional panels, etc? If you're near Bella Health+Wellness in San Francisco or Denver, I recommend them. If not, you could call them for recommendations near you since they're likely to know others who will treat you as a whole person--body, mind, and soul.
What triggered it for you? Mine started out on nowhere
Likely the (totally normal and uneventful) surgery to remove my thyroid cancer that most people get all the time without any issues. It's a very unpredictable disease. I don't know if most people know their triggering event.
Edit: I have PCOS, not POTS. Bah, this foggy brain of mine. What I mean is you can still get your hormones tested and hopefully balanced even with PCOS.
Prayers said, and I’ll keep you in my prayers.
You'll be in my prayers
This is not medical advice, I am not a doctor! Have you done a full iron panel (if you’re in the US, you can get one at labcorp on demand) or just a hemoglobin check? If your ferritin is under 100 or your other levels are low, you need to see a hematologist. I’m asking because most doctors glance at hemoglobin and assume if it’s fine you’re not anemic, but it’s the worst indicator of low iron because it’s the last thing to fall.
In fact, a full mineral/micronutrient panel would be good to run. Pregnancy really drains the body, and breastfeeding even more so. While we would hope doctors would look at these things, experience has shown they typically don’t, especially for women. You may have to go through labcorp on demand, merek, or some similar lab company to get that done.
I wish I could give advice after this, but I hope it helps give you another lead to look into.
I’m praying for you, I hope you find an answer.
Yes. When this started my ferritin was 22. I’ve since gotten it up and no change.
Check your other micronutrients and minerals. Also it can take months of maintaining ferritin to recover energy
I hope so. I just want to enjoy my baby 😔
I am praying for you and your baby! I am not a medical practitioner (I am in the clinical healthcare field) but have you gotten a sleep study and your hormones checked?
Yes I have very mild sleep apnea I tried a cpap it didn’t help and my hormones are a bit whacky because I have pcos
There are alternatives to CPAP that you could ask your doctor about to treat apnea. I also personally prefer DOs over MDs when it comes to getting care. DOs focus more on preventative care whereas MDs are more likely to medicate.
Yeah I’m actually seeing a nurse practitioner now in functional medicine and she SWEARS I’m going to get better but I have a hard time believing it. 7 months feels too long.
I'm sorry you're experiencing this, health issues are very scary. With that being said, do you know if there's mold in your living space? Have you heard of CIRS (Chronic inflammatory response syndrome)? I was also diagnosed with CFS years ago and after lots of searching, I was finally diagnosed with CIRS. There's an easy, free little symptoms cluster you can look over to see if there's likelihood you're dealing with CIRS:
This might not be your issue, but there's a growing body of research on the harmful effects of mold to humans and depending on where you live (USA?) more than half of buildings have water damage (mold)...give that symptoms cluster a look and let me know if you have questions about CIRS.
Yes. I actually tested high with mold in my urine then we found it behind wall in my home. But negative for cirs labs.
You got all the main CIRS lab markers drawn?
Yes
Interesting. Was the mold remediated? Have you looked into Lyme's?
Is it possible that depressing is causing the fatigue and not the other way around? Have you tried an anti-depressant?
Yeah I’m already on it
I have cfs and fibromyalgia. I will pray for you, friend. ❤️
Marie, the knots are affected.
https://youtu.be/bSvW56df9FQ?si=fgKRPYrCh84p5PeA
I will pray for you and your baby ✝️🙏🏻
May Our Lady will always watch over you ✝️💙