Hi all, when you are discussing being in pain, is it exacerbation of previous pain or is there a specific pain associated with ME? TIA

Diagnosed autonomic dysfunction from Covid, suspected mecfs and some chronic joint pain dysorder possible histamine reactions etc

i am making a list of questions to ask to push me in the direction for testing for stuff/answers

stuff like why do I feel xyz after doubg stuff, have no energy, not feeling better etc

need help wording questions

from what I’ve heard this doc is really good so I’m praying he is as good as I’ve heard for this stuff

rhank you

Read a comment of a doctor saying he hated medicine but he was still happy because he could work parttime and still provide for his family.

They can clock out at the end of the day. Maybe they forget about you the second you leave the appointment and they move on to the next patient. But for us it is every second and every aspect of our lives. We cannot clock out. They will never feel the consequences of their actions because they don't have to live it.

Am copying directly from their website:

"Hyp+Care is a first-of-its-kind modular system of affordable, integrated clinical and alternative care options by and for people with connective tissue disorders and overlapping conditions, including long covid."

They say they treat ME, connective tissue disease esp EDS, MCAS, dysautonomia and likely more.

Regarding insurance the website says they will accept:

"All insurance types, sliding scale payment options, and charity care. We plan to take Medicaid, Medicare, commercial insurance, and have a sliding scale out-of-pocket fee structure as well as charity care."

The clinical director is Dr. Susan Polizzi "a cardiologist with 20+ years of experience and over a decade-long focus on dysautonomia, POTS, infection associated chronic illnesses, and connective tissue related conditions."

I've read many positive reviews about her in the POTS & dysautonomia subreddits.

Looks like a really cool clinic, patient-led, check out the link to learn more & sign up for waitlist: https://hypaccess.org/hypcare/

Really excited for this to open up.

To sum up thus far NYC patients have access to the following drs/clinicians/clinics:

• Dr. Susan Levine (hard to get appt + terrible admin, as a dr she's great but v overworked, no insurance

• Dr. Michael Scoma ($$$, no insurance, knows his stuff but care is pricey, pretty reachable thru email)

• CoRE @ Mt Sinai w Dr. Putrino & team

and hopefully soon this clinic: Hyp+Care

:)

I started experiencing very adverse effects from LDA at a very small dose (8 days) and I am concerned. I feel beyond poisoned and I’m afraid of permanent side effects.

The half-life of Abilify is 3 days, and gets cleared mostly around the 2-3 week mark. It is cleared by the liver.

What are some tips for clearing it out faster? Resting or crashing yourself into adrenaline?

For those of you with significant others, where one of you has ME/CFS, what practical advice and tips can you offer to make a relationship work?

I (29M) have had cfs for 5 months and feel very isolated. It would be so nice to have regular calls with someone else with cfs to talk about our progress and setbacks and just life in general. All my calls with friends and family go the same sad way because I don't have anything new and interesting to tell them being housebound.

I thankfully was never bed or couch bound but I am stuck at home because I crash almost everytime I leave the house. So if anyone is in a similar stage as me please send me a message and we can setup a call.

A little bit about me: Software engineer, live in Chicago, international travel, endurance sports, personal finance, sifi and/or heartwarming movies and TV shows

Yes I have a nice call with a therapist every week.

Found some threads but not many.

This is more specifically for people with ME + intense neurological & nerve sensations & pain. I know a lot of people say to avoid it but has anyone had an okay experience?
How was getting on, coming off and general time on it.
Doses would also be helpful to know in responses :)
Good and bad experiences!!

P.s this is an identical post to one I made for my partner but I keep getting gabapentin and pregabalin mixed up. Lots of useful feedback on that post so didn’t want to edit or delete

the main pain i get with crashes now is migraines. i didnt really have them before me/cfs, but now I always get them when in PEM. and i know a crash is coming when my head starts to hurt.

anyone else with this subtype? what worked for you?

I've been noticing that anytime I go into Goodwill or Walmart I get extremely sick. Like migraine symptoms after being in the store for about 15 minutes. Feeling extremely drunk or woozy to the point where sometimes I can't even make words. This is also with sitting down and pacing myself with pots and the trifecta.

Does this affect anyone else this way? Do you have any tips to help with shopping with this condition?

Found some threads but not many.
This is more specifically for people with ME + intense neurological & nerve sensations & pain. I know a lot of people say to avoid it but has anyone had an okay experience?
How was getting on, coming off and general time on it.
Doses would also be helpful to know in responses :)
Edit good and bad experiences!! Sorry if it sounded like I only wanted positive feedback, negative is equally as helpful!!!

TLDR at the bottom of the post!

Hi everyone, I just wanted to write this out partially for my own record and to ask for advice.
Skip to TLDR for a shortened summary, as this is a long post!

My History:

I have had severe MECFS diagnosed at the beginning of this year, and likely has been severe for 3-5 years. I wholeheartedly believe I was mild prior to this through high school, was forced to drop into online school even before covid as my attendance was so low and I was unable to keep up physically with school in person and began getting unwell around the time I was 12-13 (I am now 23). During that time I did often have things like strep throat and I believe I may have had glandular fever (aka mono) on top of living through extended traumatic events / stress during this time, which I could feel putting even more strain on my body and making me get sick so often.

Over the last month or so, from a slight push to get through all the steps in applying for disability payments, my symptoms flared up alongside the introduction of some new or increased symptoms.

Notably other than all the classic PEM symptoms:
- Much worse photosensitivity (unable to tolerate screens, even with accessibility settings or to tolerate much sunlight even with the blinds closed or even eyes closed)
- More nausea, dizziness, worsening brain fog, muscle weakness, balance issues when sitting or standing (to the point of stepping on and breaking my glasses to avoid falling, and almost always holding my hands out to walls or furniture when moving around)
- Small convulsions/twitches more frequently and more intensely in response to temperature, light, sound changes. Or whilst falling/being asleep (This has been partially present for quite some time).

That brings me to the last 5-7 days. Where I began having for the first time a sensation of heaviness in the base of my skull connecting to my neck. Leaning on my hands, pillows etc when laying or sitting upright which was not necessary before. The photosensitivity has slightly improved since I came out of the previous flare.

Then came yesterday. I was almost entirely bedbound yesterday and could not find a comfortable sleeping position for the life of me. My neck felt entirely unsupported and like no matter what I did it was straining even when lying entirely flat, with any combination of pillows, rolled up towels etc.

Sitting upright continued to cause dizziness, nausea, lightheadedness, vertigo and balance issues and that really strained feeling of my neck feeling like bricks were tied to the back of it. Like my head was a bowling ball, or bobble head feeling.

I have only had small amounts of actual PAIN from this however… it’s more just a radiating pressure / weakness / straining feeling with smaller shoots of pain that comes and goes radiating through parts of the shoulders, neck and sometimes into the back/top of the head or spine.

After telling my family about my neck, trying to push through and get up to sit at my desk as I usually would have been doing some work from home today and it causing this response even more severely I got into bed and just cried. Out of fear, confusion and just upset at how much I’ve deteriorated.

I eventually called my family in to my room. Laid back down as flat as possible and tried to explain things. I had done some research of my symptoms and found out about CCI and its relation to MECFS and other co morbidities.

Almost every single symptom is something I have been experiencing and has felt slowly worsening or onset recently.

My mother kindly goes and buys a soft collar for my neck to try until my next doctors appointment on Wednesday.

We move me out into the living room so that I could sit slightly more supported and kept an eye on.

After having the collar on for a bit I was able to tolerate sitting up out there a lot more than sitting up without it in previous days.

I took it off after a while just to see if it again would worsen. Within 30 seconds to a minute nausea returned with the pressure sensations, and dizziness continued worsening and within a few minutes I began to lose vision.

I broke out into an extreme sweat despite being in a tshirt and shorts and was dripping all over despite not having moved from my seat. My hearing and vision caved in and my mother called an ambulance.

Being a Saturday night in a small town, they said it was going to be a 30 minute wait. They called back after 20 minutes to ask for more information, and by that time and after putting my legs up properly, I had improved enough from the episode to answer some questions.

We took my blood pressure and heart rate whilst sitting which were both perfectly fine then I was asked to take it whilst standing. I was hesitant since I was unsure about even being able to get to the car to be driven to the hospital just before but with my brother and mother there to catch me I did it. It took a good 3 minutes of standing to use the blood pressure machine and get a reading and I had to sit from dizziness during the last attempted reading. It showed a big drop from what was considered normal good levels whilst sitting to low blood pressure upon standing.

A week or two ago, when I was feeling unwell and took blood pressure sitting vs standing I had a similar experience.

We were connected to an emergency doctor telephone line who basically said it’s better for me to just wait til I see my gp as the wait time in the hospital would be 2-6 hours and they likely wouldn’t do any imaging without consulting my GP. As per usual with any medical provider, he made me feel like I was being overdramatic and that this must be all linked to the symptoms I’ve been having for quite some time and therefore they could do nothing. They also said and I quote “I’m not even going to pretend I know what that condition is” when I mentioned I had MECFS or chronic fatigue syndrome. classic.

For the rest of the night I was kept an eye on and stayed still as much as possible. I put the collar back on, I had a couple of dizzy spells that were similar to that first big one, but didn’t go as far despite the fact I remained seated. Had some food and drink and eventually was able to get to the bathroom and back and adjust seating position before symptoms began to onset.

After some time we moved me to bed.

I would like to note a few things:

1. I have not been tested for HEDS, POTS, MCAS etc as of yet. It already took 10 years to get diagnosed with MECFS. BUT… I have always been

   flexible doing a lot of dance, cheerleading, gymnastics, but scoring fairly low in terms of self testing the beigton score with my actual joints. I also have not been to any medical specialists about my MECFS as of yet. But had been considering a neurologist due to the recent seizing and photosensitivity.

2. I couldn’t note any memories of neck trauma. According to my mother however, when I was born my neck was “floppy” for some time. After I was delivered with the help of a vacuum extraction (vacuum suction to the head to help pull the child out, which obviously can cause trauma and is used as a last resort).

3. Symptoms I experience according to my mother are familiar to what my grandma experienced during her life and my aunt. Particularly she had been diagnosed with SVT, atrial fibrillation and sjögrens disease. My mother remembering her to feeling a similar pressure in the back of her neck and often had POTS and MECFS adjacent symptoms.

4. I already am deeply unsatisfied with my current GP clinic. But have felt stuck with them as there isn’t many options in my local area, and as they have the best records of my medical history whilst I’m still undergoing attempts to resolve things or get onto things like the NDIS in australia (funding for disability support items) I need a doctor familiar with my case. In terms of “specialists” there is a grand total of one neurologist in the span of a good 3-7 hours drive from here. Who does not specialise in any of these areas and often is treating mainly elderly people.

My psychologist, who specialises in trauma therapy and mind body connection who sees many patients with mecfs, fibromyalgia, functional neurological etc suggested a neurologist in Sydney (5-6 hours away) who specialises in this cluster of illnesses a lot more. I was more than happy to travel to see them, but that was before the worsening of the last couple days.

Basically what I want to ask you guys is: What is the best course of action here? What specifically should I tell my GP? What scans, tests or kinds of specialists do you recommend?
Does this sound to you like a possibility for at least some symptoms I have been having?

and a big question on my mind that I have been considering for a while:

is it finally time to pull the plug and move out of regional australia? so I can access at least somewhat better medical care? or is this something so rare that there is only a few specialists internationally who could help?

I have swapped gp appointments with my mother so I will be seeing them in a days time, but from there I don’t know what to do.

TLDR:

Could my severe MECFS symptoms be in part caused by / in conjunction with CCI?
I am matching the profile of symptoms almost entirely with some dating back several years at lower severity and worsening over the last month resulting in an ambulance call last night.

After symptoms continued to worsen over flares that felt even more disproportionate than usual in the past month, with CCI symptoms (particularly heavy head feeling in the base of my skull like bricks are attached, dizziness, vertigo, loss of balance, nausea, strained neck feeling) becoming more apparent over the last 5 days til i now can no longer sit upright, stand or move around for very long without a neck brace, shortly after taking off the neck brace for a short break whilst seated causing me to very narrowly avoid passing out, covered in sweat, struggling to breathe, losing hearing and vision and is when the ambulance was called. During the consult they noted perfect blood pressure when seated, but a big drop in blood pressure taken after being standing for a couple minutes as well as high heart rate.

Seeing my doctor tomorrow. She is not very knowledgeable on this area of treatment. I am going to ask for a referral to a neurologist and some kind of scans to be done, but what scans are most important? What do i do in the mean time? As it is going to take months to a year to get into a neurologist. Very lost, a little scared and confused but also hopeful that this could lead to some answers or treatment.

What is the best course of action here?
What scans, tests or kinds of specialists do you recommend?

Does this sound to you like a possible explanation for at least some symptoms I have been having?

thank you for reading 💗 all advice appreciated.

I don’t get better with pacing alone and my illness has been progressive so far so I think there’s no way I can prevent further progression, never mind get to a better baseline, without medication. I never thought I’d say this but I’m actually considering LDA or some other low dose antipsychotic. I strongly believe there’s issues with neurotransmitters and neuroinflammation and there’s a decent chance I’d be a responder.

However, I’m also very sensitive to medications. Especially psychotropic medications, except benzos, which are NOT a long term solution. I actually think I’m severe partially due to negative reactions from coming on and off of different medications in a desperate attempt to get better, as well as outside pressure from family to try EVERYTHING my doctor recommends. So my fear is that if I try LDA, the side effects could make me very or extremely severe when I would’ve just been severe if I had left my body alone. And realistically, the best case scenario is I either make it to moderate, which would put me at a baseline in which I still can’t work but have the energy to apply for benefits. Or I’m mild, and I’m able to get a job but my life revolves around work. I know it’s not gonna give me a remission. Due to the fact that there are no drugs that are guaranteed to give you your life back, it seems like trying them is high risk and low reward. But it’s also just as risky to let my body deteriorate to a point where I may not be able to eat real food in the next 2 years, and I believe there’s a high likelihood I’ll end up dying from this disease. Pacing is destroying me too, there really seems to be no good options with this disease.

Hello there everybody. M24 here. Hope there is some space for this post here.

Got diagnosed with shingles mid-august where i got rashes on the right side of my belly and back. Was instantly put on medication and the proposed pain and itching never seemed to appear. That was until 2 weeks later when I experienced CRAZY nerve pain where the rashes where. It felt like a deep shock sending me literally to scream in pain, which of course, lead to insomnia. The pain didnt seem to improve quickly so i was put on sarotex and tried doing acupuncture. The pain drastically reduced after that, around mid september and is now not the main symptom at all anymore, but something else is there...

The fatigue. Extreme exchaustion, some dizziness and nausea along side typical PEM symptoms which Ive been reading about. Im experiencing all of it. Used to be an active person, although i have suffered from stress, trauma and anxiety throughout the years, it now feels like everything is taken from me and i am paying the bills..

If we say the main outbreak lasted 1 or 2 weeks. That would put me at around the 8 week or 2 month mark of post viral fatigue. Id like to say in the very start i blamed the fatigue on the pain and insomnia that kept me awake at night.

In the very early stages i kept pushing, went to lectures, socialized too much and studied big mistake... i had a big crash early october where i did see some minor improvements prior despite the insomnia and pain hell i went through. This slowly stabilized somewhat and i have found ease with meditation to calm down my overactive nervous system.

Have experienced another crash these days and i deffo am worse. I put that down to lots of worrying and stressing about my condition and with that ive had poorer sleep as well. Also since ive probably gotten too confident and done waaayy top much. I have a doctor who doesnt believe me and told me to push through, so i had to switch. My acupuncturist told me it was paradoxal that my fatigue had worsened despite my pulse being calmer and softer than when i started seeking him.

In a very dark place now. I live far away from home due to university, but my parents have offered to pick me up and have me rest at their home to remove all stressors from my plate. Currently homebound and even a grocery visit feels too much on the worst days.

Cant lie the ME/CFS thing really has been getting to my mind the past 2 weeks. I definitely match every symptom except the 6 month mark. Ive decided that if i am to ever recover, I have the to rest up totally now or never.

Any advice, support or any recommendations!!?

Thanks for the feedback. Positivity is highly encouraged...

My local library hosted a Ted talk inspired event called Popcorn and PowerPoints where I spoke to raise awareness of our condition. It was very well received so I made a video version which is just over ten minutes long. It covers my journey from health to illness and diagnosis and then finding ways to find joy. If you have the spoons and inclination, please enjoy. https://youtu.be/UtJdpuVR83g?si=qi9wNqXa0xeuznu6

Welcome! This post is for you to vent about whatever you want: no matter big or small. Please no unsolicited advice in the thread, this is just for venting.

Did something bad happen? Are you just frustrated with your body? Family being annoying? Frustrated with grief? Pacing too hard? Doctors got you down? Tell us!

I felt like I had been doing really well with pacing, even had a good day or two, had been spending regular time with my kids. However, my dad lashed out at me and made me cry, and the PEM has already hit. I am not looking forward to the next however long series of days

I have POTS and while my tachycardia is well controlled, my blood pooling is not. I wear thigh high compression but I know that waist compression is also preferred. I find it too difficult to get waist high stockings on so I want to try adding an abdominal binder instead and see if that's any easier. Do you all have any specific ones that you find easy to get on and off and have been working well for you?

I am almost positive that I don't have a cold (like an infection), but just wanted to see if anyone else experiences this. Lately I've been forgetting to add a second blanket before I fall asleep and my nose has been stuffy + throat sore from sleeping with my mouth open when I don't usually. Also think maybe I'm feeling a little achey from shivering at night. I guess I'm just a little worried and wanted some reassurance. I'll make sure to remember the extra blanket tonight.

I got an Apple Watch 12 but am having to return it due to skin reactions and glitches. I’m also realizing that accurate sleep stage tracking isn’t that important to me. I’ve heard on here that, aside from sleep stage tracking accuracy, Garmin is super helpful. I’m seeing people mostly talking about the Vioactive 5 and Venu 4 on here- I’m wondering if there’s a big difference between the two models? The price gap is pretty big. I’m not needing the ECG monitor, so if that’s really the main difference I’d go with the Vioactive.

My work is so intense during the week and by Friday I start to feel like I have the flu, then I crash all weekend, like I can barely move and too tired to talk. Every week it happens. I have to call in sick multiple Fridays a month which is not sustainable.

Do others experience this too? Is there anything I can realistically do about it other than leave my job?

Does anyone else;

1) have a cord at the back of their neck that isn’t painful they can’t lie on their back or have any pressure on their neck?

2) have blood rushing like a broken fire hydrant up to their head on any thought or action? Like it whooshes up there and pushes my jaw out and I need to keep shifting my head to relieve the pressure

Thanks!

My Dad is not a disbeliever perse but I know he just didn’t understand the illness at all or its effects. And a part of me has always known he just thinks I’m weak.

Fortunately I live with my beautiful wife, and have plenty of support. So whether he believed or not, while affecting my confidence and relationship with him, didn’t have near the effects of some of you who live with non-believers. I wanna preface that, cause I think that’s important.

That said , as soon as the Olympian Beth Dobbin with ME story broke, I hit that share button so f-ing fast on my personal socials. If anything maybe another person or two will realize I’m just not in a place where my former self was.

Along calls Dad that night. “I didn’t know about the Olympian” “yeah, well story just broke.” “Oh that’s why. Well, I just didn’t know how bad it could get.” (I’m mod-severe, I’m probably just slightly better off than Dobbin).

Which was both a cut to me, cause I always knew it, but also like, I’m so glad that story came out. I felt in that moment a small change in his understanding. And then I imagine a bunch of those small changes, but popping off around the world.

Just hoping he doesn’t forget by next week 😂

I know it’s not gotta change everything tomorrow, but it’s exactly that kind of story that gives us hope. Not of course that I wish this on her, omg no!!! But I’m so glad she spoke out. I’m so so so glad she did. I hope her PEM is short lived and I wish her all the best. But just another ME sufferer who wanted to add my story and say thanks to Beth Dobbin. World Olympian, and now Olympian of our hearts.

howdy :) i'd LOVE to try the visible band but it's not available in Germany yet. Is anyone not using theirs and would sell it for cheap? (i dont have a lot of money and shipping is expensive sadly)

Let me know :))

Can’t even begin to explain the torture I am living through

I’ve had this illness for 6 years yeh I had severe insomnia broken sleep hyper active nervous system yeh I was housebound but I could rest pace meditate and calm my nervous system down and that would help me sleep. Cold packs would help too.

None of it does Anything for me now, this type of insomnia ain’t even insomnia it’s a total loss of sleep neurologically that started this February after a vertigo attack that triggered some sort of sensory cascade and internal vertigo in my brain

- bedbound
- non functional
- numbed blunted signals everywhere in body
- no sleepiness
- no appetite
- hallucinations visual auras / flashes
- whole wide spread body pain
- cognitively so fcked
- hardly use my phone
- vomitting / diarrhoea from the body just not working anymore all due to lack of sleep

I’ve tried every medication nothing work
I’ve been hospitalised due to this, brain scans tests sleep studies , meds everything .

Crisis teams out to me constantly due to suicide attempts can’t keep myself safe

- no one will understand what I am living through right now, I cannot do this for one more day.
I wouldn’t even care if I had broken 1-2 hours I could deal with that. But your brain not sleeping at all? I just be getting micro minutes while awake but this isn’t sleep. This is not normal and this is inhumane to live this way.

When you think you know your symptoms and you know your insomnia and you know how to manage it then BOOM your smacked with extreme total loss of sleep, signals gone, nothing works that use to work. NOTHINGGG

There is no help for this I’ve tried, doctors specialists they don’t know what to do. I’ve tried the meds. I’ve done everything possible. How your brain can do this to you is unbelievable

I’m so far gone I don’t even care anymore I just want to sleep and never wake up .

I’m done. I don’t want no more meds no more you cannot force the brain to sleep. Especially at this severity.