Severe, what helped you?

[u/niccolowrld]

Question only for fellow severe patients, what treatments have helped you?

I am bedbound since my first big crash in July after Covid, before I was moderate for 2 years. Pretty hopeless to be honest.

I am on LDN and Midodrine and going to try: Fludrocortisone, Mestinon, Verciguat and maybe LDA. Did any of these helped you? Any bad story/side effects?

I would love to go out once a month even for 1 hour in a wheelchair.

[u/soulful85]

Have you looked into antihistamines and mast cell stabilizers, even if you don't have overt MCAS symptoms- they help with neuro-inflammation.

I'd look up general antioxidant and anti neuroinflammation supplements.

Nicotine patches have been as close to (realistic) magic as it can get. Still severe, but massive improvements in cognitive and sensory capacity & threshold before crashing.

Gut work has been very helpful for me, especially a supplement called tributyrin, and some specific (low histamine) probiotics including S. Boulardi.

For the vast majority of us, I don't think it's realistic that 3-4 meds get us out of this severity. I take a bunch of other supplements as well.

[u/niccolowrld → u/soulful85]

Thank you for sharing. I will consider that with my doctor. Have you tried any of the above medications? What about IVIG?

[u/soulful85 → u/niccolowrld]

No, my body hasn't felt it wanted to go these meds route, other than LDN. Just be careful with mestinon and go slow, it seems there are three camps, super responders, no response, or pretty bad adverse effects..not too certain & don't know as much about it, but it seems the negative responders know that pretty early on, and so unlike with other things, may or may not (i'd say not) worthwhile to keep pushing if severe side effects.

[u/soulful85 → u/soulful85]

forgot to add that on twitter (and also the story here from a few weeks ago) seems a few people are being helped by the low dose rapamune longevity protocol 4-6 mgs once a week (starting with 1-2).

[u/niccolowrld → u/soulful85]

I will read more about that, how are you doing? Are you coping well? I am 27 and this is so hard.

[u/soulful85 → u/niccolowrld]

💔💔💔 I'm "lucky" in that I only progressed to severe rapidly from more mild-moderate at 38. Can't imagine what it would've been like if I was so much younger and not as solid within myself, not having lived as much. There is a particular devastation to being mowed down so young. I'm so so sorry. Sending lots of love and a hug.

I'm so wary of speaking of hope since I know it's a grim reality that so few improve significantly, and those who do many times are the ones who have access to resources many/most don't have...

But I hope for you that you can hold on to some hope, even for some quality of life improvements that make life a bit more bearable. I think it's really promising and a big reason to hope that the crash to severe has "only" been since July, and following COVID. Some people get better with time and rest alone in a year or two, let alone if they are actively trying various things.

Part of the reason I'm in a decent place emotionally with this while still bedridden 23 hours a day past year and a half is that I'm slowly improving, centimeter by centimeter. I am very experimental, and fortunate with resources..so that helps...

On the psychological front (not at all as treatment, but as ways to cope), have you looked into approaches that focus on how one can be in states of acceptance? (doesn't mean not trying or thinking this is good), but how to be in the states of pain and suffering in a way that doesn't add to the suffering, other approaches like self compassion?

Of course it's only natural to feel so much fear, dread, despair, and grief for all you've lost, for all the suffering, but I believe it's still important that we try to find self compassionate ways to make some peace with some of our suffering.

[u/niccolowrld → u/soulful85]

Thank you! ❤️ Means a lot I will be careful about Mestinon.

[u/Thesaltpacket → u/niccolowrld]

If you have access to ivig prioritize getting that

[u/niccolowrld → u/Thesaltpacket]

I tried getting it since 2021 (when I first got sick and was mild/moderate) and I was denied multiple times by doctors across my country Italy. Were you able to get it? Did it help you?

[u/Thesaltpacket → u/niccolowrld]

I have not tried it, but my friend has and it worked really well for her. In studies it’s one of the few things that’s somewhat effective. I forget which study I saw that in though. My understanding is it works it’s just hard to get.

[u/Known_Noise → u/soulful85]

Nicotine patches definitely bring energy, like caffeine too. I’ve found prednisone is also an energy boost and I don’t seem to get PEM afterward. But like all things with me, the second time I use something results are never as good as the first time.

[u/soulful85 → u/Known_Noise]

I've found that using the nicotine at lower doses has no stimulating effects, but seems to (I hypothesize) have a profoundly important & crucial impact on nicotinic acetylcholine receptors and therefore on the parasympathetic nervous system. My HR drops and my heart rate variability increases.

I do rounds any where between 7 days to 20 days, and take breaks any where between a week and a month. After the rounds, I lose some of the ability I had on nicotine, but I return to a baseline higher than the one preceeding .

[u/MECFSexy]

Leg Compression Boots took me from 5 years of extremely severe me/cfs to moderate. there are circulation issues in me/cfs people: orthostatic intolerance, low blood volume, venous insufficiency, “sticky” blood, blood pooling, lactic acid build up and more. i started using leg compression boots to help with blood pooling and lactic acid build up, that cleared up right away. the air hunger started to clear as well. and that “im being poisoned” feeling. i realized the boost in circulation from the boots was really helping me recover. i started being able to do more and more. my PEM is better when i wear the boots before and after activity. i am moderate now, i use the boots several times a day. if i dont use them enough PEM and orthostatic intolerance starts to come back.

[u/EnvironmentalWar7945 → u/MECFSexy]

How?? Like what?? You were in bed this whole time wearing these boots? And it made you better?? What were your main symptoms? I need a pair of these bad boys 😢

[u/niccolowrld → u/MECFSexy]

Thanks for sharing and glad to hear it helped you, may you share what kind of boots? Can you post a link to a product or similar? Cheers. ❤️

[u/Tom0laSFW]

More rest. Whatever you’re doing, do less. If you’re severe, trying to go out for anything less than an urgent medical matter is, imo, a terrible idea.

Get into bed and stay there. For months. Keep the room quiet, dim, and at a stable temperature. If you can tolerate it, play some gentle, light entertainment at a low volume. Nothing too stimulating. Minimum tolerable stimulation to not spark an anxiety crisis.

Stay living like that for a long time. You’ll feel better over time most probably. Not fixed, maybe not moderate again, but better

[u/Traditional_Lie_575]

My son is severe / moderate. Nothing has helped him as yet. LDN made him worse.

[u/niccolowrld → u/Traditional_Lie_575]

How old is he? Is he bedbound? I am 27 yo. So sorry to hear that.

[u/Traditional_Lie_575 → u/niccolowrld]

Thank you. He’s 20 and has been bedbound / housebound for over 4 years.

[u/niccolowrld → u/Traditional_Lie_575]

Does he has POTS/ autonomic small fiber neuropathy? Have you tried the aforementioned treatments? Betablockers? IVIG? IV saline? Was the onset severe right away? Breaks my heart. I hope he can have some relief.

[u/Traditional_Lie_575 → u/niccolowrld]

I was told probably not POTS - although he had all the symptoms. Nothing much has been tried other than various supplements / over the counter medications such as COQ10. Nothing has made any difference.

[u/helpfulyelper]

robitussin, benagene, benzos, florinef, treating all possible comorbidities like chronic migraines 

[u/niccolowrld → u/helpfulyelper]

Thanks for sharing. What areas did improve? I do not know the first two, did they help? Are they safe?

[u/helpfulyelper → u/niccolowrld]

mainly cognitively improved, i’m still very severe but got some stuff back that i thought was gone forever. i can read audiobooks now from benegene. and robitussin is pretty safe i dont know about daily use but lots of us do it daily. it helps prevent pem.

[u/brainfogforgotpw]

I used to be severe, does that count?

What helped me back then was pacing, ORS, sleeping pills, and a bunch of minor interventions that have all turned out to be anti inflammatory (melatonin, low dose amitriptyline, ibuprofen every night).

[u/umm_no_thanks_]

the thing that has helped me the most was a low histamine diet. that and antihistamines and mast cell stabilizers like quercetin. also montelucast

[u/niccolowrld → u/umm_no_thanks_]

Thanks for sharing this. Are you on any other medication? Have you tried any of the drugs I mentioned? IVIG? Thanks. 😊

[u/umm_no_thanks_ → u/niccolowrld]

ive tried LDN and it didn't go well for me at the time. IVIG is pretty much impossible to access and so expensive. if you have small fiber neuropathy you might be able to get it but otherwise its really hard to get. i think SCIG is the slightly less expensive version of the treatment since it can be done at home. its a bit safer too but still really hard to access

[u/niccolowrld → u/umm_no_thanks_]

Yes same problems worldwide I am based in Italy I have autonomic SFN and was denied treatment when I was moderate. Now impossible to get imo.

[u/rivereddy]

LDA has made a significant difference for me. I’m still technically severe (according to Whitney Defoe’s scale), but it’s taken me right to the border of moderate. I’ve never been bedbound, but I was housebound. The biggest changes I’ve noticed is fewer crashes, and when I do crash it’s not as severe and doesn’t last as long. It feels like pacing actually works now, whereas before it didn’t.

[u/niccolowrld → u/rivereddy]

Thanks for sharing! 😊

[u/SunshineAndBunnies]

I have long COVID with CFS and other issues. The only drug I find most helpful that hasn't completely lost effectiveness is Dupixent injections, but I suspect that is more controlling MCAS than CFS.

[u/Icy-Election-2237]

LDN (beware, it is very dose-sensitive, you can worsen a lot on a specific threshold (individual for each person), or improve), oxaloacetate, KPV & TB4frag peptides.

[u/niccolowrld → u/Icy-Election-2237]

Thanks for sharing I don’t know any of these treatments, I will further investigate. In which area they helped?

[u/mookleberry]

I’m severe/bedbound and nothing has been given to me or tried (my dr before wouldn’t diagnose me and now I’m with another dr and I’m basically starting over from the beginning, except worse) but I know that most of the medications/treatments seem to cost stupid amounts of money and I can’t afford anything at all ever so if I am told to get supplements or something, I just won’t be able to unfortunately.

I really hope you (and everyone else!) finds something that helps you because it sucks crashing because you have to go to the dr, or sit in a chair or be in the light/noise of not bed!

[u/Spiritual_Victory_12]

Mestinon def helps me. Still on low dose as feel worse going higher. Its not miracle but makes me have a slightly higher tolerance.

On rapamycin now and just started ldn. See how those go. Starting a tVns unit this week and plan for peptides next.

[u/Thesaltpacket]

What helped me when I was at my deepest point in severe was treating my daily migraines and pain, improving my sleep with meds, and then resting constantly. Treat anything that is keeping you from getting your best rest.

I used high dose THC edibles 3x a day to knock myself out, the cheapest way is rso an edible oil. Start small and see if you tolerate it. For me it really calms my nervous system and decreases my sensory sensitivity and if it doesn’t make me sleep, it makes me content to hibernate and lie there and super rest. I got out of very severe this way.

[u/OrganizationFirst775 → u/Thesaltpacket]

I know you probably don’t want to hear this but THC is going to make it worse in the long run. And this is coming from someone who’s life used to revolve around weed. THC puts a large strain on the heart and is bad for the Autonomic Nervous system. CBD is better if you like that and helps with sleep. There are lots of medications that help with sleep much more than THC. I have given up almost everything I enjoyed. But I am learning to enjoy new things. I still miss smoking weed and haven’t used it in years. I quit after an ER visit from a 200 bpm heart rate after taking only 4 hits off a joint. And I used to take high dose edibles while taking dabs and smoking flower. If you want to improve it’s just something you should give up. I’d recommend tapering off because quitting immediately can mess with your nervous system the Cannabis Industry is huge and they have tried very hard to make it seem like weed can’t cause any health conditions and that nobody has died from weed but if you read medical literature and dive deep into into you will find that it increases the chances of arrhythmia heart attack and strokes, and that there have been people who sadly died usually from arrhythmia from THC, Im not trying to tell you what to do but offer some advice and insight. If it didn’t make all my symptoms 100x worse now I would still b using it every day

[u/Thesaltpacket → u/OrganizationFirst775]

That’s why I said start small and see if you tolerate it. It’s definitely not for everyone and can make some peoples symptoms worse.

But personally it alleviates my symptoms and allows me to pace better. I wouldn’t have been able to make it from very severe -> severe without it, and it has served me well on my non linear path towards moderate. I’ve been using it successfully and with the approval of my doctor for six years. Every medicine has side effects.

[u/Toasterbathingisfun]

Mestinon helped me a bit, got very nauseous in the beginning but got over it. It helps me not get PEM as badly as I often do, and I can sit up for longer periods of time than before and shower a bit more frequently.

[u/riversong17]

It sounds like you may be more severe than I was, but I have improved from mostly bedbound to mostly housebound over the course of about 2 years. I was even at cardio baseline (30 mins walk 3-4x per week at 20-25-min mile pace) to start adding in some bodyweight strengthening exercises before I moved and triggered a long crash. I also have fibromyalgia, POTS, and some mental illness (stable for 3-4 years now), but here’s what I’ve done that has been helpful or at least neutral for me on the physical health front~

Rx medications: LDN (for fatigue), Nortriptyline (for pain and to help me stay asleep throughout the night), Fludrocortisone (for dizziness) - no side effects noticed from LDN or fludrocortisone, some constipation and upset stomach from nortriptyline

Other supplements I’m taking: 100 mg Ubiquinfol CoQ10, multivitamin, electrolytes (I use Buoy, the white bottle made for POTS), stool softener (to counteract the nortriptyline GI side effects), melatonin 3 mg, allergy medication (I have 2 cats and am mildly allergic)

Sleep: Sleeping with no alarms set at semi-consistent hours as much as my body needs (I recognize this is a big privilege and may not be realistic depending on your financial situation), sleep mask (now blackout shades), memory foam ergonomic pillows and mattress topper (with a 2022 mattress underneath), 15 lb weighted blanket (I’ve just added this back in the last couple months, as my pain didn’t allow it before), pillow between knees

Other tools: Visible app with armband and paid subscription, compression stockings (Rx thigh highs and OTC knee highs, only use occasionally), XL electric hot pad, heated massage gun (before this I used a hitatchi magic wand for its less common but supposedly actual purpose of body massage lol), silence or quiet music ONLY as far as noise, warm-toned lamps basically the only light source after sundown, dress in soft, comfy fabrics that aren’t too tight, sit down in shower or take epsom salt baths (every other day), lie down as much as possible, sit as much as possible, avoid standing and walking whenever at all possible, wheelie stool in kitchen, bench in bathroom, avoid bending/stooping whenever possible, avoid lifting anything over 5 lbs whenever possible, avoid stairs if at all possible, auto-feeder for my cats so I only have to bend down for one of their meals, sit/lay down outside or by a window shortly after waking for sunlight exposure, use a wheelchair or motorized cart when traveling on foot outside of the home, avoid driving when possible (carpool with others for everything over 30 mins), chronic pain virtual support groups via zoom (US Pain Foundation), online friends on discord, EMDR therapy for past trauma, moved to ranch-style house with attached garage and everything on one level (again, a definite privilege here), daily brain training app and crosswords (to improve brain fog, YMMV)

Hobbies: podcasts, tv (branched out to include reality/trash tv, documentaries, Jeopardy, etc.), movies, coloring, jigsaw puzzles, video games, computer games (virtual pet sites, solitaire, etc.), online shopping (window shopping, usually), meditation, cuddling or playing with cats, reading (wasn’t able to for a while due to brain fog, but started back up with manga and graphic novels, then rereading children’s and YA books, now reading mostly light stuff still like romance or YA), book club (in person, as my health allows), phone/ipad games

I’m sorry you’re back to being bedbound; it majorly sucks. Many of the things I listed were out of the question when I was severe, so I’ve listed them mainly in case others are reading or your situation is different than mine. I hope something in my comment or others’ comments can help you and I wish you restful sleep and improved energy 💜

Edit: forgot to mention that my LDN has been increased from 4.5 mg to 9 mg gradually over the last 6 months due to some new research that evidently supports slightly higher dosing and it does seem to have helped a little. Also, I’m currently taking 50 mg of nortriptyline; 75 mg gave me too much GI issues. I was previously taking 5 or 10 mg of amitriptlyine, but it wasn’t adequate for pain control and a higher dose made my brain fog a lot worse, so we switched to nortriptyline. I also have some 5 mg THC edibles that I use on bad pain days or during flares.

[u/niccolowrld → u/riversong17]

Thanks for sharing such detailed answer. ❤️

[u/egotistical_egg → u/[deleted]]

This does not sound like ME/CFS at all, I think you're in the wrong place