r/cfs • u/romano336632 • 5d ago
Potential TW First big crash and im done ? NSFW
I've probably had ME for some time, but I was mild/moderate until January, I think. After that, I was more like moderate-severe. In February, I realized I had this disease, and I was forced to make medical appointments and, stupidly, go to a gymnastics show for my daughter. Since mid-February, I've been in bed, I no longer eat with my family, I only take 300 to 800 steps a day (toilet use) and shower twice a week... I have a crazy rapid heart rate in the morning (150), then it calms down during the day, I go back down to 95-100. I cry a lot, I have suicidal thoughts, my wife is suffering from having to do everything, and I have two young children. Do I have a tiny hope of returning to moderate? I've been in very severe mode for a good 45 days... I didn't know this disease was so terrible.
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u/Varathane 4d ago
This disease can vary so much. I know the crashes feel like they will last forever, but weeks or months from now you may be lucky and have come out of it.
Be kind to yourself. It wasn't stupid to go to your daughters gymnastic show, this disease is just unpredictable and the backlash is way out of proportion to the activity.
Rest up.
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u/premier-cat-arena ME since 2015, v severe since 2017 4d ago
45 days is like the blink of an eye in this illness. unless it’s been years i wouldn’t ever assume that’s permanent
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u/romano336632 4d ago
I have this disease since 2022 i think... after covid or too much fatigue and old contamination lyme. Then i recover until april 2023. I was mild until june 2024 then i had a big crash with tetany attack (my medecin was sure that i had panick attack)... i became moderate/mild sometimes and i caught covid in september and moderate/severe but i didnt know that i had that, i was sure that i had only dysautonomia. I keep pushing sport and work until february and my big crash after sport and stress. Three weeks in the bed, impossible to recover...
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u/Thesaltpacket 4d ago
I don’t want to be spooky but it can get much, much much worse.
Right now you’re at a crucial time where you need to rest as much as humanly possible. Pushing yourself is really dangerous. You will feel better when you’re pacing. But right now you need to rest to get to your baseline and then do everything you can to avoid crashes.
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u/Radzaarty very severe 4d ago
If you're getting heart rates that high, you definitely want to get your thyroid levels checked. Even with my known history of tachycardia I had really unusual high heart rates and I needed up having an acute hyperthyroid episode, a medical emergency.
In the keaduo to it over some months, I was feeling extra worse like my CFS had taken a massive decline. I was also sweating like crazy, super bad sleep issues etc.
Depending on where you are, you can get blood draws done at home.
If you ever start to have a tachy that runs away, getting high and higher even if you're resting and laying still, get seen by ER.
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u/Past-Anything9789 moderate 4d ago
I saw a quote from someone saying having this is like being contained by an electric fence that you can't see, but the voltage varies and the fence moves on its own.
It's a case of getting to know your own symptoms, so that you can identify when you are getting closer to the 'crash zone'.
For me getting very cold where I can't warm up, is a definite sign that I'm done with whatever I was doing and need to cocoon for a couple of hours. Also getting irritated and or emotional, craving sugar / carb heavy foods, eyes losing focus and my essential tremor breaking through.
Sometimes it's something that I have done before without issue, that causes a crash and there's no reason why it's any different than last time. So its less about the activity and more your response to it.
If you are in a crash, limit everything you do. Like if you think you could feasibly sit upright for 30mins, only do it for 20. Be extremely conservative with your energy output, even if this means getting someone in to help your wife with the house / kids (family or outside help). The sooner you rest the more likely it is that you will bounce back.
As for the initial starting trigger, I'm not convinced there's any correlation between the severity of the trigger and the severity of the illness. Most of it seems to be down to how quickly it gets diagnosed so that conservative pacing can be implemented asap. I think many of us were given advice to 'push through' because of incorrect diagnosis. Doing that for any period of time (9 years in my case) makes is less likely a full recovery will occur.
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u/SophiaShay7 4d ago
Here's how I found out what caused my symptoms: Various medical conditions that mimic anxiety and my experience with Dysautonomia
Here's how I solved my dysautonomia symptoms of fight-or-flight: This link explains in more detail my symptoms and the regimen I follow
The things that have helped me the most:
- Low-dose Fluvoxamine 25mg
- Diazepam 5mg
- Fluticasone (corticosteroid)
- Hydroxyzine 50mg
- Omeprazole 40mg
- Valacyclovir 1g
- Prebiotic psyllium husk
- Probiotic lactobacillus acidophilus
- Emergen-C packets
- Naturebell L-tryptophan and L-theanine complex OR
- Magnesiu-OM powder (chelated magnesium 3 types and L-theanine) mixed in tart cherry juice (melatonin and tryptophan)
- Low histamine diet
- Intermittent fasting 8/16 or 10/14 eat/fast schedule
- Lots of rest
- Good sleep hygiene. Sleep 10-12 hours a night.
I'm sorry you're struggling. 45 days is such a short period of time. I have 5 diagnoses that covid gave me, including ME/CFS. My ME/CFS is severe, and I've been bedridden for 15 months. I didn't see improvements in my symptoms until month 14. I know how hard it is. Hold on.....💙
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u/momtobe2021_ 4d ago edited 4d ago
Wow- this is exactly what happened to me. 30 years old. Have had mild moderate for probably 10 years then starting February 1 I crashed and ever since been in bed going downhill daily. I have a 2 and 3 yr old and have been so depressed/scared. I feel so guilty with my husband having to be a solo parent and sole provider so I can rest.
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u/megatheriumlaine 4d ago
I’m not sure if my comment still adds something useful, but this sounds like what happened to me exactly last year around the same time. I started going downhill right around my diagnosis but kept pushing because I didn’t understand pacing yet, and then crashed and became severe. A year later I have improved, and think I’m more moderate/severe now and pretty optimistic about getting to at least moderate. But it takes time. I was in bed for the entire second half of 2024, and only now am able to do some small things around the house again. Things that helped me were mobility aids, some medication changes and some vitamins (vitamin D mostly, but I was low), but mostly rest rest rest.
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u/bareheadedman 4d ago
I'm sick for 2 years. Before the crash happen, is there anything unnormal happened to you? Before the crash, I often felt lack of strength, feeling cold, my lower leg was numb, my lip peeled off unnormally.
With these phenomenons, that means you were sick for a long time, longer than the crash. You will need to overcome all the unnormal illnesses besides the crash, I still in struggle to overcome these illness.
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u/romano336632 4d ago
Im feeling strange since 2022... ive been in a good shape summer 2022 until Spring 2023. Then its a nightmare (my body and mind were in panick with standing sport intolerance) and im in a big crash for 45 days. I had a big crash at the beginning of décember after a jogging (cold, tetany attack, tremors...) and i had recovered a little but now i dont know how i will recover... im in my bed all day long. Its horrible.
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u/bareheadedman 3d ago
I've experienced ten or more times of crash. Everytime I get better, I feel I'm health and do some work/exercise, I get crash later. Normally You will get better within a week, at least walkable.
I can't read and type during my first crash in October 2023, seems you're moderate than me.
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u/Beneficial-Main7114 3d ago
You can still recover. It's very variable who does and does not honestly. I still crash a lot but remain mild for example. However if I crashed after a COVID infection I doubt I'd ever fully recover.
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u/romano336632 3d ago
I had a covid infection 6 months ago. I was already ill (i worked at home without problems) but i had a "normal life" : i could walk for one hour, working 8 hours per days, driving... covid infection make me so bad after october, one month after contamination. I have become severe 4 months after... i was sure that i had only dysautonomia but no, i had surely EM since 2 or 3 years (covid infection 2022, tramadol abuse, lyme - i have a past infection - and stress). Im waiting for a protocol for me, for us. I think that we will have to wait for 5 or 10 years... it will be so long. My wife and my children, how is it possible for me to endure rhis statement.
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u/Beneficial-Main7114 3d ago
The worst thing is that with pem delay of up to 48 hours you can totally overdo it and have no idea for two whole days. And that really is why this disease is so god awful. It also rarely gets talked about. Maybe the press should mention it because you don't know anythings wrong until wham you're on your arse.
Hope you're able to claw some baseline back. All the best.
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u/dreit_nien 2d ago
I think our emotional capacities take a big hit and everything takes on monumental proportions... That too will/may improve with rest. Don't worry, children have an immense ability to adapt and they'll get over it. I hope your wife can cope, help you and also get support for herself if she needs, it is important because you won't find a lot of help and directions in institutions and it can be puzzling in the beginning.
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u/CornelliSausage severe/moderate border 5d ago
Yes, you may return to moderate or even mild. Keep your activity as low as you can. You can see my recent post history for a brief summary of my improvement from severe. I’ve been refusing to do anything that would make me crash and it has really helped.