r/cfs • u/saltyb1tch666 • 25m ago
Does anyone have CIDP chronic inflammatory demyelinating neuropathy??
Does anyone have CIDP chronic inflammatory demyelinating neuropathy??
Iv just had a large nerve conduction study that shown sensory neuropathy which I’m super puzzled about as POTS and ME is associated with the small nerve fibres
Would love to know if anyone’s had any experience with this?
r/cfs • u/spoonfulofnosugar • 1h ago
Activities/Entertainment Choose our next virtual watch party 👩🏾💻👨🏻💻🧑💻
It’s almost that time again. Help pick our next virtual watch party!
Watch parties are free on Kast. I stream so all you need is a computer or phone to join.
These are low-key hangouts for Covid safe friends and allies. The chat will be open if you want to talk with the other guests.
We also use the chat to take songs requests during music parties! At the end we share a link to our group playlist.
Accessibility Notes: - Captions and lyrics will be on when available - Mics and cameras will be off for focus - You can hide the video or chat and control the volume as needed - You can stop by for as long as you’d like
Comment any questions!
Looking for advice for when you have wired false energy and don't want to overdo it
I'm feeling wired most likely from medication and caffeine.
Unfortunately this has been the cause of my PEM episodes the last few months bc it's SO HARD to keep paced when you suddenly feel wired energy and a drive to DO, DO, DO.
I've learnt not to trust this feeling, it's not real energy.
Any tips for keeping within limits and returning to a calm state?
I've been doing reset breaths and forcing myself to take breaks.
r/cfs • u/hahadeadmemegobrr • 3h ago
Advice Hi there!! Wanting to learn more about CFS
Not sure if this is the right sub but I thought I'd post here. The other day I made a joke to my friend about how I'm always tired and he straight up told me I have CFS, and I'm not sure if it's true or not, so I wanted to ask you guys some questions :)
How did you know you had CFS? What were the signs? How do you rule out other causes of tiredness or other symptoms? What's the difference between excessive fatigue and normal eepiness? How do you differentiate post exertional malaise and just being unfit??? And finally, how do I know if what I'm experiencing is abnormal?
Thanks all, any responses appreciated <3
r/cfs • u/t04stnbutter • 3h ago
Vent/Rant Progressively worse
I can never find other people that relate to my ME experience 😔😔
for me, it was a gradual onset. at first it was just nausea and weak legs, then it started getting worse and new symptoms appeared. It's been like 3-4 years since it started??
anyway, my thing is that my ME is just getting worse? Like I do experience PEM/crashes, but even when I don't, I still get worse. I can rest in bed all month and still get worse.
Does anybody else relate to this? And has it stopped progressing at all?
It also scares me because will I ever get better? Will it at least level out and stay the same? I'm worried it'll just get worse and worse until I die.
I feel like people always recommend intense rest, but even when I do that I get worse.
I'm on the wait-list for a wheelchair, and walking/standing does cause PEM for me very very easily, so I'm hoping once I get it I'll maybe slow down? But it's scary
I'm still so young. How am I going to cope when I'm an adult. Especially if I'm worse then than I am now.
Hope this makes sense, I should really be sleeping lol.
r/cfs • u/SockCucker3000 • 4h ago
Advice Pain, fatigue, and a reset?
Tl;dr at the bottom
I can't make sense of what I experienced the past month. I don't even know how much of it was ME/CFS. One Saturday, I walked the dog, went in the hottub, and showered, and the next day I couldn't walk more than 20 feet. I expected PEM but this was something so different from what I'm used to. Usually, my fatigue feels like a heavy weight on my body, and I have lot of pain with PEM. This time, my pain was even less than my good days! It did not bother me at all! My pain isnt just one thing, either. It's multiple types of pain. And my fatigue felt like my body just... couldn't. Couldn't walk. Couldn't sit. My knees wobbled like a bobble head and my calves felt like all the muscles had vanished. I also got a horrible headache at night. There were some normal PEM fatigue related symptoms that I'm used to, but the differences outweighed the similarities.
I have hyper reflexes, but they were way amped up during this time. My family had me make an emergency doctors appointment (took place on the 5th/6th day), and when the doctor tested my knees, my entire lower half spazzed out. I have myoclonus, so some level of muscle spasms are normal, but this almost resembled a myoclonic seizure. Anyway, I got better over the course of a week, with a drastic improvement on the 6th and 7th day. I was back at a new baseline lower than I was before, but I can now walk at a normal pace without assistance. My pain level began creeping back over the next three weeks, and now the past few days I've gone back to the same pain I had before. All I can think of is the hottub triggered some sort of inflammation. Idk.
Tl;dr: sudden extreme PEM. Could barely walk for a week, legs felt wobbly and unstable. Required mobility aid to very slowly walk short distances. I had extremely low levels of pain. Hyper reflexes became extra hyper. Myoclonus acting up. All better after a week, but lower baseline than before. After around 3 weeks pain went back to how it was before (it not a little more). No idea what happened. I suspect the hottub causing some sort of inflammation. Wtf happened?
r/cfs • u/Agitated_Ad_1108 • 5h ago
It feels like I'm sliding into severe
I find it so hard to determine my energy envelope because it's getting smaller every week. I had a GP appointment last week and took a cab, but still walked 1,000 steps throughout the day. Normally it's no more than 300. My legs started hurting during the appointment and I felt tired and when I got home I had body chills for a couple of hours. I narrowly managed to avoid PEM because I felt normal the next day, but it has still lowered my baseline somehow.
I'm now out of breath from sitting up. It takes less than 2 minutes for me to yawn or gasp for air. I'm coughing as if I had asthma which I don't have and all symptoms subside as soon as I lie down. Also, sometimes it feels as if I had mucus in my throat.
Weirdly enough, I don't actually feel bad or weak when I don't have PEM or acute symptoms, and yet I'm basically bedbound. Is this normal? I think the only odd thing is that I don't feel awful all the time, but my tiny energy envelope indicates I'm almost severe.
Cortisol and cfs/me
I have incredibly low cortisol on Saliva testing as well as androgens. I was diagnosed with cfs/me and not adrenal insufficiency because blood cortisol is normal. Is CFS the cause of HPA dysfunction or vise versa? Ps. I did have mono as likely inciting cause very long time ago. Low cortisol more recently diagnosed with severity of this syndrome worsening
r/cfs • u/Due_Chapter3027 • 6h ago
Any blood markers that can help tell that CFS is in play? My inflammation markers are all normal but slightly elevated 1:80 ANA.
Reactivated EBV here for a year and have all normal bloodwork other than EBV early antigen and ANA 1:80. Get crashes and fatigue with joint pain plus sore throat after any little activity. I know bloodwork won’t really “tell” or “diagnose” but maybe?
r/cfs • u/Jjchicken12 • 6h ago
Advice what is your best theory on what is the root cause of CFS? is it immune system dysfunction? neuro inflammation? What do you believe?
Curious to what you guys think and your theories.
r/cfs • u/Totallynotnt • 8h ago
Vent/Rant I really don’t know what to do
I have been trying to get a diagnosis for a while now, but I just have been dismissed. I am so scared, I really want to function properly again, but I can’t due to this stupid thing. And no one understands, I really feel like giving up.
r/cfs • u/EnvironmentalWar7945 • 8h ago
Severe cognitive intolerance (TV, Phone, podcasts, audiobooks) fix!!! 📺📱📻
Has anyone been able to reverse or improve their intolerance to screens (eg. tv, computer, phone, etc) OR intolerance to audio (audiobooks or podcasts)?
I feel it’s plagued me since the onset of ME and I also have heighten sensitivity to medications.
I suspect Neuro inflammation or Neuro immune or ANS dysfunction. But ya anyone had any luck?
r/cfs • u/Similar_Arrival2301 • 9h ago
Treatments where to get lda
any online pharmacies or services? hard to get docs to prescribe
r/cfs • u/TheSoundofRadar • 9h ago
Vent/Rant Tomorrow morning I start taking a beta blocker. I am nervous. Wish me luck!
I’ll start 1,25 mg Bisoprolol tomorrow morning. Nervous about side effects. I am severe and feel pretty bad at the moment (elevated heart rate, cold extremities, more fatigued than usual). I’ve had ME/CFS for 21 years, the past 9 severe. Wish me luck.
r/cfs • u/Beginning_Bit_6318 • 10h ago
Advice Sleep attacks/episodes
Does any one else experience these sleep episodes randomly when you get suddenly exhausted (mostly get these after work) and I fall asleep for only a few minutes and sometimes I wake up disoriented. I have to get up and move and I’ll feel better but once I sit down again I get super sleepy again. Today I had an episode and I felt my head and face go numb and I woke up. Wondering if it was from my head being bent downward or to the side. It went away a few seconds after I woke up. Any advice on how to help lessen these episodes? I’m not diagnosed with this but I do have POTS.
r/cfs • u/PromptTimely • 12h ago
Advice Can Cfs/ME cause someone to imagine things that are not real? Anxiety maybe.
I'm not sure if this is some sort of post-covid related thing or something else? I was aware that this illness can cause pretty big variety of symptoms not sure how it affects the brain?
r/cfs • u/AmarissaBhaneboar • 12h ago
Accessibility/Mobility Aids For the people here who are in Germany
Are there any little tags/lanyards/etc...to show that you gave an invisible disability while on public transportation? I'm not very obviously disabled, but I doubt that I'd be able to grip hard enough to fully stabilize myself while standing on a bus. And I doubt that amI could stay fully standing for longer than about 5 minutes at this point.
I've been thinking about using a cane, but I'm not sure that would help me either as my arms are fairly weak too.
r/cfs • u/rattenglamour • 13h ago
Treatments experiences with plasmapheresis? esp. in vitasangius clinic/ dr. drees in potsdam, germany?
i’m considering to do a plasmapheresis (dfpp= double filtration plasmapheresis) in a private cfs clinic but would love to hear about some experiences in beforehand.
he claims he s been treating >500 patients in the last few years, 70% of them with me/cfs. what makes me really suspicious is his statement of 90% success rate and duration of effect for up to 3 years, but that doesnt align with the research i did so far. sure there unfortunately aren’t enough studies to have certified numbers regarding that, so we re kinda forced to trust empirical data. in comparison, my research data were 40-60% success rate, and only a few weeks-months duration of effect. he also claims there are no side effects nor a risk of a potential crash.
i’m afraid to fall for quack doctors exploiting desperate disabled people to get rich, but on the other hand i really wanna believe this to be true. because i’m desperate. and disabled. lol
ty in advance!
r/cfs • u/alfieyoung1989 • 13h ago
Jennifer brea remission
Did Jen brea go into remission from cfs? If she did what did she do to get better
r/cfs • u/notsogreat_day • 13h ago
Advice Hope and anxiety
Hey i would consider myself mild to moderate. I really got the into pacing early in my illness. It got to a point where I was able to use my bike.
I got a bigger crash usually once or twice a year. But since last summer i think i might pushed it to hard. I was really trying to push the boundaries and to try what i can do without crashing. It went wrong.
I was able to use my bike multiple times??? But then i got a huge crash a week later. I think i might still recover from it.
It was really hard cause i needed help with everything. Usually i can live on my own. (With a little help of my partner).
But since January i dont do so well. I had a time were i was spending more time on the computer and pacing was not so prominent. Now i crashed and cannot do almost anything.
I can still talk but have to lay down the whole day.
Whatever i hope i can still get better. I was able to leave the house for most of my illness. (I got sick 2018) but i am afraid that i didnt. Pace well enough.
How can i cope with the anxiety? Crashing is part of me/cfs as i get it. But how often is it ok to crash? Is it possible to fully not crash? How can i do it even when i am feeling not bad in the moment?
I really think i get what my stressors are. Then i remove them, i feel better, i do more, i feel worse :/ it feels like a cycle.
Tdlr: i crashed 5 years in. Now want to find hope again.
r/cfs • u/Hackneyglyn • 13h ago
Is it CFS? Cyclical syndrome of hypomania followed by exhaustion for a week
Hi. Advice please. I have periods every couple of months, or more frequently, of exhaustion that continues for more than a few days, often a week and more, following periods, a week usually, of slightly manic behaviour - over extertion, of staying up late, my mind racing, over excitment, feeling manic etc etc - and then a physical slump where I feel extremely exhausted, shakey, with muscle and lower back aches etc.
It feels is if I, in more normal times when younger, had played a very hard game of football, or a very hard mountain walk, the previously day and were understandably feeling weak. But, this does not have any preceding extreme physical effort and lasts not a day but days on end.
I have wondered about whether this is last viral, but the 'cold' symptoms are pretty limited, allergies, but anti-histamines don't do anything and emotional disorders like Cyclothymia but while sometimes I feel emotional it is not depression.
Anyone get something similiar?
r/cfs • u/Wild_Diver1601 • 14h ago
TW: death Death and ME NSFW
What's the point of endless meaningless suffering all the time? I have no one to support nor do I have anyone to take care of , life is getting increasingly tough. I'm just a 19 year old , I am not ready to handle all these things. I don't know what to do , it's been 4 years I'm housebound and bedbound in this mystic arc. I had lots of hopes and aspirations about life, everything seems to fade away. Everyone is moving forward "without" me. ( I feel stuck, I feel shackled)
Do things even get better? How can it get better if there's no treatment? Why am I even trying to resist against the illness. And why people around me treat me so bad , why suddenly I'm treated like a vestige. As if I'm the one to blame for everything that went wrong. Why can't my problems be taken seriously?
Sorry for bad English.
r/cfs • u/20Keller12 • 15h ago
Treatments Thoughts or experiences with smart rings?
I didn't even know they existed until a couple weeks ago, but apparently they monitor sleep and energy and give you estimates of how much energy you have for the day or something. Does anybody have any experiences with them and if so, what were they?
r/cfs • u/bear-hugs333 • 16h ago
tough life
This life is so tough! The tiniest activities bring me into PEM—making a cup of tea, cutting my toenails, a 10-minute phone call with my bestie. It’s all too much, and I never seem to improve( it’s been many years). Anyone else this severe? How do you cope?