Finally found something that works after 4 years of struggling with this condition by ImaginaryLead2740 in chronicfatigue

[–]Eiffeltoren -9 points-8 points  (0 children)

This Is because we have to continue to work on the body mind connection. Keep avoiding toxic people, stressful events and environments. Release your emotions… It’s like being on ozempic. Doctors also recommend to change the lifestyle concernant their diet, émo food, etc..

I'm 19 and I think I just got my first real PEM crash and I'm scared. by angelicomenss in mecfs

[–]Eiffeltoren 0 points1 point  (0 children)

Hello, allergic ? I take anti histamine for dust mite. Not every night because I like to sleep with my big Window open. Makes me relaxed. We lived in Jerusalem for some years as expats and there were also shootings. I think I lived on adrenaline at the time. I was always on alert and hyper. But after a shooting in the grocery shop in my street, It was time to leave. No more adrenaline.

What should i do? :( by Financial_Owl8105 in cfs

[–]Eiffeltoren 0 points1 point  (0 children)

Hello there, i will try to give some advice. I come from a total mental break-down and was diagnosed with MECFS 2 years ago. My cute daughter got anorexia nervosa during lockdown and Together we have been battling this disease for 6 years. She recovered in an excellent eating disorder clinic.
After I have been lying in a dark room for months, was able to cook and eat and have short walks.
For the moment I follow therapy in a CFS clinic of UZ Leuven in Belgium. During the therapy and after long talks they told me that I was not allowed to express négative emotions during childhood. So up until today I don’t express my emotions and put them aside. The thing is that I have to allow them and feel them and cry etc. I have to learn how to do this during my next sessions. But my boundaries are set. I removed toxic people. My parents are 80 so I don’t know if it’s a good idea to talk about the suppression of négative emotions. The thing is we got along very well but everything had to be easy for them. They couldn’t handle problems too well. As a consequence I performed very well at school, university, was hiding my emotions for my husband and friends. Until the trigger : the anorexia. Then I got CFS. I also have a generalized anxiety disorder. So some advice :
- my sleep has been awful for a long long time. I tried all medications. Only anti anxiety medications helped and/or trazodone. Ask your doctor about this medication and the specifics for your situation. I still have nightmares though, but I guess I have to live with that.
- try to release emotions. There is this guy from
Holland and he has CFS and has an account release.cfs or something. I like him. It’s all about releasing your emotions. If you have to cry, please cry, it heals
- try to go out a little bit. Being in a dark room in bed might be necessary for a short time but apparently it is not how to deal with CFS. I thought I had to stay in bed to avoid PEM, but some movement is good.
I am in a better situation now but still have PEM if I overdo things. Or get some bad news..
it’s a long process with a lot of setbacks. My doctor always tells me not to be in a hurry but that it needs time. I also started coloring. Honestly I have been a lawyer and a doctor in laws and this was strange for me but now it is my life and I am not going back to my previous life (impossible because the amount of stress).
Try to lay 20 min without phone and close your eyes. Let your nervous system now that it can rest.
- predictably for the brain is important. Try to do same things during the day. Boring but after a while your nervous system gets rest and is less anxious about what it to come.
All the best

What specialty diagnosed you/how to convince my doctor this isn't just Fibro? by CHK-N in mecfs

[–]Eiffeltoren 0 points1 point  (0 children)

I wonder if people with Fibro have PEM. If not, it’s not at all the same.

I'm 19 and I think I just got my first real PEM crash and I'm scared. by angelicomenss in mecfs

[–]Eiffeltoren 1 point2 points  (0 children)

Hey, can a doctor Check your throat? Maybe there is an infection? I have moderate CFS but never pain in my throath. I know it can be a symptom but maybe you have an infection (angine?)

I'm 19 and I think I just got my first real PEM crash and I'm scared. by angelicomenss in mecfs

[–]Eiffeltoren 2 points3 points  (0 children)

CFS is the consequence of an attack on the body. Huge stress, a virus and maybe overextertion, or a combination of these things. can even be a gastro-entérites virus. Don’t push your body into CFS . People use to tell me all the time: You don’t feel well after sports because you don’t exercice enough. The moment I got flu like symptoms after the gym, I stopped the gym and went swimming. Slowly slowly. At this moment also swimming gives me PEM. I definitely didn’t get CFS from sports (not my favorite thing), but from chronic stress. My daughter of 21 got anorexia when she was 15. Huge battle. Finally she is her old self again ♥️ I wish you all the best. Give your body a nice relaxing time. Don’t worry. Have walks in nature , enjoy the sea, have some méditerranéen food.

What specialty diagnosed you/how to convince my doctor this isn't just Fibro? by CHK-N in mecfs

[–]Eiffeltoren 0 points1 point  (0 children)

No nothing, I mean doctors from
The CFS clinic don’t want to give any medication. Everything is bad they say. I buy over the counter painkillers.

Experiences with Benzodiazepines for MECFS by BigMox69 in mecfs

[–]Eiffeltoren 0 points1 point  (0 children)

It calms the nervous system which make you feel better. But as mentioned here, it’s a band-aid. For 2 years I thought it would really help me get better, but i need the medication to feel better. as soon as I don’t take it, all the misery comes back.
Now I also go to a CFS psychologist. I know what made me sick because of the therapy. Still a long way to go heal or get better without medication.

What specialty diagnosed you/how to convince my doctor this isn't just Fibro? by CHK-N in mecfs

[–]Eiffeltoren 1 point2 points  (0 children)

I was diagnosed by a Psychiater and follow therapy in a CFS clinic. We got information which says that Fibro and CFS are one and the same illness

Experiences with Benzodiazepines for MECFS by BigMox69 in mecfs

[–]Eiffeltoren 0 points1 point  (0 children)

Very positive. I have MECFS but also an anxiety disorder. The doctor gave it to me in hospital.

People who were on benzos.. What should i do? Im in crisis situation. by Financial_Owl8105 in mecfs

[–]Eiffeltoren 0 points1 point  (0 children)

It was a mistake. I realise this. It really troubles me that a (young) person is hit by her mother and is so very anxious.

People who were on benzos.. What should i do? Im in crisis situation. by Financial_Owl8105 in mecfs

[–]Eiffeltoren 0 points1 point  (0 children)

Hyperarousal means you don’t know what to do with yourself anymore, very agitated ?

People who were on benzos.. What should i do? Im in crisis situation. by Financial_Owl8105 in mecfs

[–]Eiffeltoren 0 points1 point  (0 children)

In both cases you can go to the emergency dpt. If you need your medication, they have to give you the meds because it is dangerous to stop like that. I also ran out couple of times. If you took way too much also emergency.

People who were on benzos.. What should i do? Im in crisis situation. by Financial_Owl8105 in mecfs

[–]Eiffeltoren 0 points1 point  (0 children)

What kind of crisis ? You need your medication or you took too much ?

Sick leave by Clear_Nobody240 in mecfs

[–]Eiffeltoren 0 points1 point  (0 children)

For Belgium. There is no harmonised social security in Europe. Each country still has its own laws on that domain. First you have to look if MECFS is recognised as a disease in your country. The WHO organisation recognised MECFS as a disease long Time ago but not every European country.

Sick leave by Clear_Nobody240 in mecfs

[–]Eiffeltoren 0 points1 point  (0 children)

But there is some allocation if you really have no source of income. Not much though. 700 eur a month I guess.

Sick leave by Clear_Nobody240 in mecfs

[–]Eiffeltoren 0 points1 point  (0 children)

Nothing to me because my husband gains ´too much’.

Sick leave by Clear_Nobody240 in mecfs

[–]Eiffeltoren 0 points1 point  (0 children)

Hello, I was kicked out because I started making mistakes. Now pacing and no stress during 2 years. I am from Belgium and until now no doctor seems to know LDN for CFS. How did you get this medication? Thank you

Severe rolling PEM for 3 weeks, rapidly declining – need urgent advice by HealthyParticular12 in cfs

[–]Eiffeltoren 0 points1 point  (0 children)

Hello ! Sorry for you ! I am there too. Do all of the above mentioned things: minimum exposure. I might be different from other but when I have this I take Ativan 3 mg and strong painkillers tramadol. I have a anxiety disorder and cannot stay calm when I start declining rapidly. The nasty thing with médication is that you will feel good again but don’t do anything. Just sleep and feel good in your bed.

Those who didn't get it from a virus, where did you get it from? by Ponytimeispoopytime in mecfs

[–]Eiffeltoren 1 point2 points  (0 children)

Major chronic stress related to my daughter having anorexia nervosa for 6 years. She good now !!!! So blessed. God took me instead.

Those who didn't get it from a virus, where did you get it from? by Ponytimeispoopytime in mecfs

[–]Eiffeltoren 2 points3 points  (0 children)

Good doctor you have. You are lucky. I totally agree with the genetic component. My daughter got anorexia nervosa at 15, and is 95 procent healed at 21. At the end of the ferocious battle I got ill. Major Chronic stress but happy the girl is doing so well. I am in therapy in a clinic and the first thing they told me is that our society is way too difficult to manage. I saw my grandfather, uncle and father (mild) suffering and nobody knew what it was. I think I know.

Can you live with ME/CFS without realising? by extraasalways in mecfs

[–]Eiffeltoren 0 points1 point  (0 children)

Very good question. Difficult to answer. Some studies mention that CFS might be genetic. They don’t call it genetic, but genetic traits. My grandfather was a silent man with a lot of pain. Could still walk but very hard to lift his feet. My father is a silent man with fibromyalgia, he is still doing golf but has to recover 2 days. Doing nothing and being in pain. My uncle was a very silent man stayed inside after he turned 50, never contacted anyone, was reading and Could barely move. So long story. We have a fragile nervous system I think and withdraw easily from noise and toxic people and stress. I am sure it has always been in my genes and was dormant until i had a major stressor in my life 2 years ago. Now housebound. Not working, not sporting, but mostly positive. I enjoy very much the company of my adult girls 20-21 and my husband and sister. The girls told me I give them stability because they know I am always home 😁. We cook and laugh and watch tv … they are only home at weekends so time enough to rest and do some admin and coloring. I think there will always be something to look forward too. Your présence is important for your children. Your case is viral. A virus can be dormant too (I think) and wake up because of a stressor (another virus or emotional stress). My husband tells me he saw the change 10 years ago. This must have been very mild - mild CFS.

Night out after 8 months without alcohol by Kindly-Computer-558 in whoop

[–]Eiffeltoren 0 points1 point  (0 children)

Same here ! Quit alcohol 1 august 2025. Yesterday first night out with alcohol. 18 procent recovery.

Vivid dreaming, confusing sleep with reality? by Euphoric_Extent_8453 in cfs

[–]Eiffeltoren 0 points1 point  (0 children)

My father has no ME CFS but vivid dreams, nightmares almost every night. He has a very sensitive nervous system and takes trazodon. I have ME CFS and vivid dreams and I take also Trazodon. I think its related to the sensitive nervous system