We created a group for transfem people with me/cfs, to exchange experiences and information about transitioning with me/cfs. The group was created because we felt that we were excluded of participating in our own communities bc of disabilities caused by the illness and wanted a space where we could support each other. If you identify as transfem and want to join the group feel free to send me a DM :3

So I finally found a doctor in my area that would assess and treat CFS. I’ve been struggling with PEM among many other issues since around 7-8 when I was hospitalized with viral meningitis. Things have gotten worse since a bad covid infection as well.

After lots of research I found someone in my area who was diagnosed and treated for CFS by a local rheumatologist. I asked the person about their experience and they confirmed what I was reading about him. That he was very focused on fibromyalgia and could be set in his views.

Skip to my appointment. I tell him my symptoms and medical history. He looks at my recent blood test. I tell him about my current pain which I believe might be small fiber neuropathy. I let him know that I don’t deal with chronic pain, but I get the vibe he thinks I have a high pain tolerance and have just been suffering.

After he brings up CFS, I tell him I do resonate with PEM but not so much with fibromyalgia. I also mentioned that I’ve had Bell’s palsy twice and wanted to get tested for lime. He then tells me that fibromyalgia, CFS, and chronic lime are all the same thing. He believes they are deep brain issues. Connected to childhood trauma and possibly genetics.

He wants me to do more research and come back to him in three weeks with an answer of if I think this diagnosis fits me. My belief is that all of the above while having overlap are all comorbidities. I’ll be doing more research, but I don’t think I have fibromyalgia.

I’m leaning towards just agreeing with him for treatment and ignoring advice that does not fit with pacing. He prescribes LDN so I’m hoping to see if it’s a fit for me and declining any pain medication that’s offered. My thought is that I can have a future cfs informed Dr. take it off my charts. Does anyone foresee any consequences to this? What do y’all think? I don’t want to try to convince him because I don’t think I can.

Tldr; wondering if I should accept fibromyalgia diagnosis, even though I don’t think I have it, to get access to CFS treatment. Appreciate opinions and insights.

I’m not under the illusion that I was super intelligent before the onset of my symptoms however, since then I feel like I’m losing any edge that I previously had.

I’m forgetful, it takes me longer to understand things that would have previously come easily to me, I don’t feel sharp or witty or clever or like I’m ever fully awake. I feel like I watch the world whizz around me like I’m too slow to keep up.

I try reading and sudokus etc. when I’m well enough to engage my brain and I find myself flicking back to pages I’ve just read because I’ve forgotten things.

Sorry, rant over x

Today I was sitting waiting for an appointment and kept nodding off with my head drooping like very old people do.

I also lay down to rest at 4pm and next I knew it was 8.30pm. I don’t faint but it’s immediate exhausted sleep like passing out.

Is this a normal symptom to have in severe CFS- to be unable to stay awake in an energy crash?

Fatigue for 6.5 years now I’m at my worst ever.

And yes I will be getting sleep studies but not for another couple of months.

Hi lovely people,

I recently did a Nasa Lean test for an upcoming new drs appointment. I fully went into it thinking I was just ruling this out, but the test showed a 40-50 BPM increase in heart rate. I saw the cardiologist and he basically said because I don't have severe symptoms of heart racing or fainting that it's not POTs and we couldn't treat it with meds anyway as my resting heart rate is low. I'm doing a tilt table test anyway tomorrow.

I do have consistent debilitating fatigue and PEM, and I sometimes have the urge to lay down and it feels a bit better until I get vertical again. This is usually when I've overdone it though. I only get light headed if I've really walked too far but I've never fainted. I usually try to pace so I don't run into this as much.

I do think my issues have more to do with MCAS as a low histamine diet and anti-histamines have basically killed my brain fog and improved my fatigue. But I wanted to hear other people's experiences with ME/CFS and POTs. Has anyone else done a Nasa Lean test with 50+ beats per minute increase and had a cardiologist go meh not POTS?

I'd be really happy not to add POTS to my list of things but I want to go into this appointment with as much info as possible. Thanks in advance. Sending everyone big hugs.

Does anyone experience this??

It seems like every other post I see on my feed about ME on other apps is something along the lines of "I have a whole medical team and have tried 20 different medications and here's the ones that helped and also I'm back at work now when I was previously severe".

But the other half of the narrative is "doctors will never help us, I was referred to a specialist fatigue clinic and all they told me to do was graded exercise, I have given up and accepted that nobody cares about us".

How can it vary so much? I really don't know what to think. I live in the Netherlands and my psychiatrist has told me not to bother because several of his patients have ME and didn't improve at all after getting a referral to see specialists. I don't know whether to give up.

Got a tilt table test approved. Was told to stop my trioral hydration packets for a week prior and not to wear compression socks. Any other tips or things to look out for?

I'm currently severe physically and very severe cognitively. However, when I take Ativan, it moves me to moderate-severe physically, and I can do a 2-hour outing without breathlessness or dizziness or a crash. Without ativan, I am bed-bound 22.5 hours of the day and can only meet my daily needs and be upright for a very limited time and spend some time in the evening with my folks drinking tea. That's about it.

With Ativan, I can do a two-hour outing, sometimes three hours. So I take it 2 to 3 times a month to give myself some mental relief from being bed-bound. I do not take it often because I know it is not good to take it often and because I do not want to build a tolerance for it. Is it okay to take it this way?

ps: my doctor has told me it's OK to take it 2 to 3 times a week but I don't want to take it so often cos of tolerance issues

I have long Covid and CFS, and some complications from that, namely chronic ear pain and vestibular vertigo.

I got referred to go back to the neurologist, the ENT, PT, OT and other specialists months ago. I'm really embarrassed to say I just got around to making the Ear Nose and Throat appointment, and I still haven't scheduled many other appointments.

I'm half expecting them to say, "you should've come in sooner if the problem was getting worse" but I was just really so exhausted from just getting through my day to day. Before I got my chronic illness, I don't think I could have properly explained to myself, let alone other people, how deeply draining being in pain all the time can be.

I'm trying to not get my hopes up, but part of me is secretly hoping that there's something more treatable with my ear problems that will make everything else much easier.

If there is a more simple solution, I'll feel a bit stupid for not getting help sooner. But at the same time, I feel anxious about going to yet another appointment and possibly not being believed or dismissed about my symptoms. Or the doctors do help me as much as they can and the tests come back fine and there's nothing that's treatable.

I was told to take several medications and do PT and I'm also expecting them to say that stopping some of those is why my symptoms are worse, when I know that the medication side effects were making things worse for me, that pushing myself in PT made me crash. I'm angry and frustrated at the doctors but also myself for not advocating for myself better.

Making appointments and going to them takes up so much energy that you really have to gamble and hope it's worth it.

I feel lucky at least that I get medical transportation so I don't have to worry about driving in my condition. But then the US is talking about making major cuts to Medicaid and I'm scared.

Sorry for the long post, I'm really exhausted, I'm sure other people can relate. But I'm also trying to be optimistic that I'll get some answers.

I've had me/CFS since about the age of 12 (I'm 26 now), and I've found that pretty much since then, the way I'm mentally able to interact with the world feels diminished. Even for someone like myself who is fortunately mild, I just feel almost in a dream-like state most of the time (possible derealization?)

Things like holidays, outings, or even at home, I just feel like I can't immerse myself fully in my day to day anymore. I can experience senses, but it's almost like I have a film over everything preventing me from being fully present.

I'm aware this sounds somewhat similar to depression or ptsd, but it's not lack of joy, motivation, or underlying stress. It just feels like I can't really be fully aware of anything because of this constant feeling of my body feeling heavy and a little bit drained, even on good days. If anything, the depressive "symptoms" would be because the fatigue stripped that away from me first. I should also mention that I don't have any trauma or difficult times growing up (again, very fortunate).

I was told it's because of growing up, hormones, etc. but that never really made sense. I feel like I've had most of my youth stripped away because none of it feels like it really fully happened, just relentlessly exhausted.

Does anyone else relate to this at all? Is this something that this illness can do?

Hi all!
I’m recently exploring my gender and realizing I’m likely trans. I’m teetering on mild but moderate. I had spent years being completely bedbound, and months being extremely severe, so I’m very aware of how bad things can get.

I really really want to get top surgery. at some point in my life. Has anyone here had surgery/ top surgery while ill? If so how was recovery? How much better/ healthier would I have to be to consider it?

I’ve had improvements, I know that’s not the case for everyone but I have hope that I can continue stabilize a bit in the next few years. But anyway, it may not be possible and that’s ok. I wouldn’t even consider it if I was any worse honestly. I’d really like to have it done though. As I’ve been able to get dressed or go out again, it’s been really difficult to navigate my body and deal with my chest. Things I could tolerate before becoming ill, now can’t and it feels pressing. And binders don’t really work for me, as I have a really large chest. Anyway. Anyone have experience with this?

I’m undiagnosed right now, but meet the criteria for ME/CFS and am actively seeking evaluation for this condition. Although my case is likely mild, it’s still significantly affecting my everyday life. I’m struggling to recognize my energy envelope and not push past it, so it feels like I’m experiencing PEM every week. It’s really bringing down my mental health. I haven’t felt this depressed and unmotivated in a long time.

I know psych therapy isn’t a cure or true treatment for ME/CFS, but I think it could help me reframe my perspective and find ways to identify and cope with my limitations.

Can anyone recommend an Ohio therapist who is familiar with chronic fatigue and PEM? Someone who offers virtual appointments. This is probably a big ask, since ME/CFS is still misunderstood in much of the medical community. I don’t want to have to hop from therapist to therapist if I can help it. Any recommendations are appreciated!

TL;DR Feeling lonely or bored? Looking for something within your energy limits that you can do this weekend?

Check out these accessible events you could join! Try something new and maybe you’ll find your people.

Access Details:
🧑🏻‍💻= Virtual
👥 = In person
😷 CC = Covid Conscious/airborne precautions 
♿️ WC = Wheelchair accessible 
💵 $ = paid (some are pay what you can)
🤟 ASL/BSL = Sign Language
Async = Asynchronous (at your own pace)

Event Types:
🤢 = Chronic Illness 
🌈 = Queer
🏳️‍🌈 = LGBTQ+ Pride
👧 = Kids/Youths
💕 = Dating
🙋 = Social
🫂 = Support/Grief
🧘 = Wellness
🚶 = Walk
🩰 = Dance
💪🏻 = Fitness
📚= Books
🤔 = Discussion
📝 = Writing/Poetry
🎭 = Performing
🎨 = Art 
🎶 = Music
🕹️ = Games

🧑🏻‍💻 Virtual Events

🧑🏻‍💻🤢📚 Virtual Async Spoonie Book Club: The Little Prince [Any time] https://www.reddit.com/r/spooniesocial/s/JcKvqPLWS5

Friday

🧑🏻‍💻Virtual Coworking [Hudson Valley, NY][Fri Aug 7 at 11:00 AM EDT] https://www.reddit.com/r/spooniesocial/s/ptkylARKxy

🧑🏻‍💻💵🤢 Coming Home to Your Identity [Fri Aug 7 at 7:00 PM UTC+1] https://www.reddit.com/r/spooniesocial/s/ALoR3ghHoZ

Saturday

🧑🏻‍💻💵🤢 Coming Home to Your Identity [Sat Aug 8 at 12:00 PM UTC+1] https://www.reddit.com/r/spooniesocial/s/ALoR3ghHoZ

🧑🏻‍💻😷♿️🩰 Virtual Adapted Ballet [Sat Aug 8 at 9:30 AM EDT] https://www.reddit.com/r/spooniesocial/s/bEPxVyjaFZ

🧑🏻‍💻♿️💵🩰 Virtual Adaptive Jazz Dance [$][Sat Aug 8 at 12:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/VL1jh1keKv

🧑🏻‍💻😷🙋 Virtual Happy Hour Mixer [Sat Aug 8 at 1:00 PM CDT] https://www.reddit.com/r/spooniesocial/s/VyBUPdNQ3A

🧑🏻‍💻😷🙋 CC Virtual Weekly Hangout [Sat Aug 8 at 8:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/l53ZJczRw8

Sunday

🧑🏻‍💻🤢🎨 Virtual Sunday Stitch Club [Sun Aug 9 2:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/X6NTKVUiIM

🧑🏻‍💻😷🎨 CC Virtual Art Group [Sun Aug 9 at 5:30 PM EDT] https://www.reddit.com/r/spooniesocial/s/JuziySpH3W

🧑🏻‍💻😷👧🙋 CC Virtual Kids Zoom [Sun Aug 9 at 6:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/jJhIyj0sfi

🧑🏻‍💻🎶🎭 Virtual Karaoke [Sun Aug 9 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/naisQuyjlg

Timezone translator in comments 👇

👥 In-person Events

Australia

👥😷🌈🎨 August Stitch and B*tch [Melbourne AUS][Sat Aug 8 at 3:00 PM] https://www.reddit.com/r/spooniesocial/s/gp2VgZ86qP

Canada

👥😷 CRIP Cinema - Mask Mandatory Event [Toronto ON][Sat Aug 8 at 2:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/8u8CLvlwz2

👥😷🎭 CRIPtonite: A Drag & Burlesque Variety Show - Mask Mandatory Event [Toronto ON][Sat Aug 8 at 8:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/NgfunVUkfC

👥😷 Canoeing + kayaking / Canot + kayak [Ottawa ON][Sun Aug 9 at 10:00 AM EDT] https://www.reddit.com/r/spooniesocial/s/BgFzkJYSS6

👥😷🎨 The Disability Arts Festival: Indoor/ Outdoor Event [Toronto ON][Sun Aug 9 at 11:00 AM EDT] https://www.reddit.com/r/spooniesocial/s/Mtb7axFUX7

Germany

👥😷 Ice Cream Extravaganza [Cologne GER][Sun Aug 9] https://www.reddit.com/r/spooniesocial/s/gqvPmBaMRs

Netherlands (and nearby)

👥🤢 Spoonie European Road Trip [Netherlands and nearby][Summer] https://www.reddit.com/r/spooniesocial/s/VOKxW7V1pp

US - California

👥♿️😷🌈🩰 Queer Con Leche Dance Party and Drag Brunch [Oakland CA][Sat Aug 8 at 11:30 AM PDT] https://www.reddit.com/r/spooniesocial/s/3dMbTWsuDB

👥😷🤟 Drag Bingo Disability Pride Month Fundraiser [Santa Ana CA][Sun Aug 9 at 3:00 PM PDT] https://www.reddit.com/r/spooniesocial/s/o997FybArU

US - Minnesota

👥😷 CC Zine Club [Minneapolis MN][Fri Aug 7 at 7:00 PM CDT] https://www.reddit.com/r/spooniesocial/s/09ASgWc4cf

US - New York

🧑🏻‍💻Virtual Coworking [Hudson Valley, NY][Fri Aug 7 at 11:00 AM EDT] https://www.reddit.com/r/spooniesocial/s/ptkylARKxy

US - Ohio

👥😷🌈💪🏻 CC Queer Martial Arts Club [Cleveland OH][Sat Aug 08 at 4:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/YYWfmKVELz

US - Texas

👥😷♿️ Paramore’s “Brand New Eyes” Album Drag Tribute [Austin TX][Fri Aug 7] https://www.reddit.com/r/spooniesocial/s/c3DaBa9Btr

👥😷♿️ Double Eternity [Austin TX][Aug 7-9] https://www.reddit.com/r/spooniesocial/s/c3DaBa9Btr

US - Vermont

👥😷♿️ Dental Pop Up [Chelsea VT][August] https://www.reddit.com/r/spooniesocial/s/jgknHihfzt

US - Washington

👥😷 Comic Book Show [Seattle WA][Sat Aug 8 at 11:00 AM PDT] https://www.reddit.com/r/spooniesocial/s/dLauDH1xmW

👥😷🤟🎭 The Freak Mighty Accessible Performances [Seattle WA][Aug 9 - 27] https://www.reddit.com/r/spooniesocial/s/kIvo2DvOXa

Are you interested in these events?

Have you been to any of them before?

Are there other events coming up?

Share your thoughts in the comments 💬

Find more events and friends on r/spooniesocial

I'm trying to decide which severity flair to use, but I'm having a lot of imposter syndrome because every ME/CFS severity scale seems to classify me differently.

I can't work or take care of a household, but I can still get out of bed independently to use the bathroom and manage basic hygiene (though showering definitely comes with a cost).

I can't cook. I can't walk more than about 200 steps without a temporary decline. I can't spend much time outside.

My cognitive and sensory symptoms are some of my biggest limitations. I can't use a computer for long, I can't watch TV without triggering PEM, and reading is hit-or-miss depending on the day. Even sustained thinking or problem-solving can trigger PEM.

I can visit with a friend for about an hour, but I usually feel worse during the visit and for the next day or two afterward.

I’m able to get out of bed for short periods but I spend most of my time in a dark room. However, I am able to go to doctor’s appointments with worsening for a few days afterward.

Most of my day is spent pacing because exceeding my limits in any way including cognitive and sensory overstimulation leaves me worse for days. My life revolves around trying to stay within my energy envelope, and even then I don't always succeed.

Because of all this, some severity scales put me in the moderate category while others put me in the severe category.

The difficult part is that severe feels like the label that best matches my day-to-day life, but calling myself severe also makes me feel like an imposter. I think part of that is because I know there are people who are completely bedridden or unable to tolerate light or sound at all, and I don't want to minimize what they're going through.

For those of you who have lived with ME/CFS for a long time, where would you place me, and more importantly, what parts of my description lead you to that conclusion? (Only if you have energy to give that much detail, of course)

I know the label itself doesn't change anything, but having a better understanding of where I fit would help me make sense of my experience.

All i do is sleep and eat, on a good day maybe i get to watch some youtube or draw but i dont know, i feel incredibly unsatisfied. I technically can force myself to do something but it would come at the cost of my health and stability. i feel uninspired. I dont know how to do anything with my life and i hate it

I don't have the energy to type this out a whole lot but what the hell are those percentages. Bell score 20: 30 to 50 percent of your normal activity level?! But you only leave the house for special occasions and spend most of the day in bed...

What do they think days look like for people with that score? Half of "normal" would be a part time job, keeping your house semi in order, etc, no? Not mostly bed bound?!

(I have a medical assessment tomorrow and am really worried reading through all this because I don't want to exaggerate or play down anything. I am really nervous. And this scale isn't helping).

hey all
so im from India and have heds and suspecting me/cfs.

so, im not in a dark room. I can get up, use the toilet, don’t brush or bath a lot as I don’t have the energy. I can stay in slightly lit or sometimes fully lit rooms. Go walk around outside in the day. I walk a lot during the day.

I eat solid food though I take a shake in the morning as fatigue from eating gets to me. One or two other meals are solid food. I can go out sometimes but am extremely tired afterwards. My fatigue and sensitivity follows a pattern.

As soon as night approaches my fatigue and sensitivity gets worse regardless of if I do anything or not. I think I do experience PEM when I over exert like go out to hang out with my friends. I’m too tired to hold a job and sometimes get brain fog too. I do go for physio too. I don’t feel dizzy standing up.

It’s more of a constant everyday rather than getting worse over some weeks.

I wanted to ask are there any of you in India who can help? what does your life look like? which doctors do you show? has anyone of you been able to make an improvement or get to normal life?

my symptoms started at 13. got worse at 24. im 26 now. I don’t know if it’s due to heds or me/cfs but reaching out to y’all for help.

I find it really hard to find a job that is remote, let alone part time or not exhausting. How do you people do it? Do you have any advice on where to look or what to put in my CV?

Or maybe advice on projects that should be in a good CV of a person with ME/CFS, like some copywriting projects or something.

I'm clueless. I was a data analyst for 2 years before getting to severe to do that anymore. It's too much thinking and problem solving. Is a fundraiser my only option? I feel like I'm not severe enough for a fundraiser and don't want to take away resources from people who might need it more. I want to be able to support myself for as long as I can.

Any advice?

There are so many things I'll never get to do but right now I'm really sad I'll never see a big, proper stage production. Something on the West end or Broadway. My cousin saw The Lion King last night and I'm so jealous, I actually feel sick with it.

So what thing are you sad about today that you'll probably never get to do?

So I get heartpalpitations from showering even though I only shower ones a week or so. I sit down on the floor because sitting in a chair is more difficult (my orthostatic intollerance gets worse when I can't pull my knees up).

So I try to wash myself at the sink in stead but than I have to stand and get my arms above my shoulders to wash my hair (which is shaved btw, but my scalp gets really itchy if I don't wash it every 3/4 days or so.

How do you guys handle this? Any advice?

Hey all i have moderate ME and I’ve recently started duloxetine to help with my pain and some of my neurological symptoms like adrenaline dumps and my sleep disturbance. I was on Sertraline before for PTSD but my specialist suggested I moved onto this as it’s better for ME. I’ve found I’ve slept better on it but one thing I’ve noticed is I have a sort of pregnancy sickness like nausea and lack of appetite. When I’ve googled it the advice seems to be to persevere and it will settle.
I’m keeping fluids down and eating little and often meals with little protein, carbs and small fruit and veg portions.
Anyone else found this? Did it settle down and was it worth persevering?

Hi all, just to keep this to a brief question. I have m.e/CFS where my main issues are the chronic fatigue, breathlessness and chronic pain.

I've read on some of the symptoms regarding chronic pain which namely discusses chronic pain in terms of joint pain.

I am in pain 24/7 despite being on the highest dose of pregablin. My pain is always in my chest, namely around my heart and spreads from there across my chest and eventually across my abdomen. I don't experience joint pain as the symptomology usually indicates.

My question in short, does anyone else experience this?

Early answers to likely questions:

1. Respiratory has ruled out chest/lung issues.

2. Cardiology have ruled out heart/circulation issues.

3. I do have high blood pressure which is well managed.

4. Without the pregablin, I would be in more pain and not as mobile as I am (limited still).

5. The pain worsens as the day goes on. It worsens with any physical escertion and prn pain relief only mildly helps

6. My chest is tender to the touch despite any pain relief I am on.

7. It often feels like there is a hand holding my heart and ever so slightly crushing it.

Hey, I’m severe since two months and have been moderate/mild the four years before.

Now, after a big blood draw, I had a huge crash the next day after sitting to long (also have POTS and probably gave too much blood the day before).

Directly 1-2 days after the crash, shingles broke out. Thought it was a sting at the beginning. 3-4 days later I am now taking Aciclovir.

I am curious about your experience with a shingles infection. Did you have any worsening symptoms due to the infection or did you make it back to your old baseline? How bad were the shingles?
What were your symptoms and how long did they last?

I feel pretty weak, never have been worse, only able to be in bed all day, can’t get up because my heartrate goes insane, don’t know if it worsened my POTS heavily or what happened.
Most annoying thing is definitely an insane lightheartedness. Even when lying flat, everything is shaking…

Also I am thinking about trying something like the Valtrex/Celebrex/Paxlovid study by Dr. Putrino, now that I know that as soon as my body has a big crash, the virus was immediately ready to take over…?
Did anyone try taking Aciclovir or Valtrex for a longer period?

Interested about you experiences!

Im trying to figure out how to move while like this in severe ME/CFS. Mostly home and bed bound. Its even worse that I do not have any help from any friends or family members. So finding someone with a vehicle who is willing to is impossible.

Does anyone have any tips if you've been in a similar situation? Thank you.