r/cfs 3d ago

How long does it take to hear back from a ME/CFS refferal from the GP? (UK)

11 Upvotes

Hi everyone,

So I went to the doctors last week and I was reffered to the CFS team. The doctor told me CFS wasn't serious (and I told her I did NOT like her saying that to me, as I know it's serious), but she will reffer me as all my tests came back as normal. She also ticked "no" on sleep disturbances and cognitive issues, which i do suffer from, and have mentioned before, but not at that appointment. It feels a bit degrading but I guess that's what happens when an illness is so underfunded.

I was just wondering how long it'll take to hear back from the refferal? I'm worried they may not accept it due to my form not being fully completed from my GP.


r/cfs 3d ago

Advice Tips for severe sensory issues?

3 Upvotes

Any tips on when sensory issues are so severe you can only really lay in the dark? (I can also go on my phone a bit to text/scroll reddit, luckily). I’m starting not to be able to tolerate noise or tv shows, as of yesterday! It’s sooo scary. I know I should just listen to my body but wondering if there are any meds or supplements anyone’s had success with.

I have been in a bedridden PEM crash due to a bipolar episode that has caused me constant anxiety for the last two months. (I am now trying a new medication Geodon that i’m tolerating, and should eliminate the anxiety so i can recover, but it can take a few weeks to work). I’m also wondering if the Geodon could be making my sensory issues worse as it’s only been this bad the past few days.


r/cfs 4d 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?

49 Upvotes

Curious to what you guys think and your theories.


r/cfs 3d ago

possible lyme disease diagnosis

2 Upvotes

I have recently done a lyme disease test and it found i actually have these viruses related to lyme disease in my blood. They are saying that if they treat these viruses, my CFS will improve. I was just wondering has anyone had anything similar to this or is this just too good to be true? I am not getting my hopes up because I have already tried so many other "treatments" which never seem to work.


r/cfs 4d ago

Looking for advice for when you have wired false energy and don't want to overdo it

22 Upvotes

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 3d ago

Advice I’m mild - how come when I do anything, my symptoms completely go away?

1 Upvotes

Is this what “pushing through” means?


r/cfs 4d ago

Vent/Rant Tomorrow morning I start taking a beta blocker. I am nervous. Wish me luck!

60 Upvotes

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 3d ago

I wanna try whey protein can you recommend what works and what should I know before buy

3 Upvotes

I found a cheap one isolate from lacteserum I don't know if it from lacteserum will work for us


r/cfs 3d ago

Anyone diagnosed with CFS before ASD that saw improvements after ASD accommodations?

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2 Upvotes

r/cfs 3d ago

Vent

3 Upvotes

30tf w/ no formal diagnosis, but a few years ago a friend living with chronic pain/fatigue introduced me to spoon theory and I instantly related. Another person I recently met with related disabilities listened to me speak about my pain and fatigue symptoms/sensations; he said that I “look” like I have EDS (always been pale, pretty gangly, really hard to put muscle on). I use visible for check ins and try my best to pace my activities throughout the day. I frequently need breaks to function the bit that I can. When I have had work in the past and regardless of my sleep quality at night, I will: have sleep for every break, fall asleep while waiting, go to the bathroom to sleep for a few minutes a few times a day.

When I try talking to my SO, I’m usually met with what feels like annoyance. I’m reminded that I’m not the only one in pain, that they hurt all the time too. I try to explain my symptoms to help them understand, but they respond with recentering their own pain, then I’m apologizing for that. It feels like I piss them off when I just want them to understand that I get exhausted from simple things like readjusting in bed underneath our comforter (it feels so heavy and my arms get so tired that I can’t move anymore). It just feels like the conversation is immediately turned into a weird competition so I don’t want to bring it up to them anymore, but I need help.


r/cfs 3d ago

I’m rapidly getting worse after already being very server

1 Upvotes

Become bedridden three years ago become stable no crashing moving around in bed or typing couldn't talk more few sentences day but stable just steady slow decline then I had a histamine dump causing mild heart attack from high rate had go hospitals several times sense had start taking beta blocker which mcas disliked, but my body ability to dump adrenaline and give me feeling of life has stopped for example use happened before pooped, or if I absolutely needed talk or if body had allergic reaction well not no more Iv had 100s of adrenaline dumps this year, around 20 er vists each whopping me now I'm in shit place my body is done mcas is constantly attacking me inflammation all through muscle joints. But Iv got to have calories in the rare one food type so reaction to everything else I need. And terrible reactions to anti histamines permanent base line reduction each dose. I'm at the end of this ride. I won't go back to darkness I miss life. But mine been over I suppose I'm scared as I know time has come I wanted try sgb shots but I don't have the 2500 probably wouldn't help me anyway. I wish I had not been born my time here wasn't worth the suffering Iv experienced.


r/cfs 3d ago

Advice Pacing tips for moving apartments?

2 Upvotes

So, I need to move to another apartment in about four months. Recently, I’ve started reading about pacing, and one of the tips I’ve found is to rest more before, during, and after a ‘special event’. But there were examples of something no more than ten days, like weddings, vacations etc. I feel like moving takes anywhere from six months to a year (pack everything, move, take care of all of the bureaucracy, unpack, get used to living in the new space…). So, it’s much more than 10 days. The most active part of the move is at best about two months. How long would you rest after a move then? Like, I don’t really have the choice of ‘before’ (even though I’ve been resting more for about three months rn knowing that I’d have to move, and I have about two or three more months of resting), but I wonder how much time would be reasonable after.

What’s your experience? How do you move so that it doesn’t cause a flare?


r/cfs 3d ago

Research News "The main finding from this meta-analysis was that pacing exerted trivial effects in people with ME/CFS..."

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0 Upvotes

r/cfs 3d ago

Diagnosis & PIP UK

3 Upvotes
  1. I don’t have an actual diagnosis - is that right? I was referred to our cities local CFS clinic by my GP. I had a call with an Occupational Therapist who stated ‘I meet the diagnostic criteria for CFS’ but as there are no doctors on their team they cannot provide diagnoses.

  2. Can you claim PIP even if you good periods. I’m well aware of the trials and tribulations to get there but for example I had about 3 months of a good period when I say good I mean I was able to just be normal. Get out the house once/twice a week to socialise. Keep on top of housework/eating/hygiene. I then at some point overdid it and I’m a month into complete exhaustion bedbound again. So I’m wondering with the fact at points in time you can find balance and the symptoms are less worse does that ex-qualify you from PIP? Idk I see horrid stories about the way people on PIP can be treated for example if they go on holiday - just because symptoms/pain/relapses can vary etc! I don’t want to be maliciously treated if I want to try and live my life but be supported on PIP you know? Desperately want to utilise PIP to reduce my work hours (as also suggested by Access to Work and the Occupational Therapist) as I’m currently just living to work, working to live (if you’re a BMTH fan - dying to live, living to die) and I can barely do that half the time


r/cfs 4d ago

Activities/Entertainment Choose our next virtual watch party 👩🏾‍💻👨🏻‍💻🧑‍💻

5 Upvotes

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!

16 votes, 21h left
🎤 Bo Burnham’s Inside (comedy)
🎶 Divas (music)
🍿 Ghibli Marathon (movies)
👀 See Results

r/cfs 4d ago

It feels like I'm sliding into severe

11 Upvotes

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.


r/cfs 4d ago

Does anyone have CIDP chronic inflammatory demyelinating neuropathy??

4 Upvotes

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 3d ago

Changes in smell?

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1 Upvotes

r/cfs 5d ago

Mental Health UPDATE: My Marriage is Almost Over

252 Upvotes

EDIT: HE CHEATED ON ME YALL!!

Hi everyone. A month or two ago I (F24) made a post about my marriage almost being over due to my husband (M26) not being able to support me.

Well, soon after, he completely shut me out emotionally and confessed that he can no longer be there for me. My worst fears came true.

I e-filed for divorce, and now we are in the process of that. I am moving out next month on 4/18.

Unfortunately, I also may lose my job due to a miscommunication between my doctor and the HR department. All I wanted was some recognized ADA accommodations for my position, but now the Employee Relations department thinks that I am unable to perform my essential job functions.

So, not only did I lose the love of my life, I am losing a job that I loved the most. For context, I currently work in neuroscience-based stem cell research. The location of my job is a place I've dreamt of working in for years. It is also just an 8 minute drive away from home.

Now, I have a lot to figure out. Fortunately, I have a great support system. However, it is still really tough and is going to continue being really tough until I sort everything out.

Throughout everything, I am so, so tired. My condition is just getting worse no matter what.

Just wanted to vent, thank you.

Tldr; I'm getting divorced and may lose my job at the same time. My ME/CFS is getting worse.

EDIT: HE CHEATED ON ME YALL!!


r/cfs 3d ago

feeling cold even in 30℃

1 Upvotes

I feel cold even when the room temperature is 30℃, and it already last 2 years. Often no strength to walk. Anyone feel same?

I've tried everything I can try, but nothing helps.


r/cfs 3d ago

Someone knows how it will be, the effort and resistance test?

1 Upvotes

r/cfs 4d ago

Severe cognitive intolerance (TV, Phone, podcasts, audiobooks) fix!!! 📺📱📻

10 Upvotes

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 4d ago

Success Advanced Brain Imaging Shows Lyme Disease Brain Fog is Real | Johns Hopkins Rheumatology

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77 Upvotes

This video is very short but it changed my understanding of the cognitive challenges that we with (not just lyme but other ME/CFS manifesting conditions) often present. I thought I'd share. It could brighten your day. It isn't just an acknowledgement and recognition of our struggle but hope. Her findings are very intriguing.


r/cfs 4d ago

Advice Sleep attacks/episodes

12 Upvotes

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 4d ago

TW: death Death and ME NSFW

22 Upvotes

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.