Thanks Johnny, great topic.My jaw dropped at all those symptoms as I have them ALL ++ too ,but NEVER heard them mentioned. Very long term diagnosed severe M.E. sufferer.You are my only support & I appreciate all that you do & I NEVER forget you're suffering too.All the best & I'll be following you til the day I drop❤😊
Same... I am a former athlete and my legs became thin straight away. Blurred vision. Muscle twitching. The gut is probably THE most tiresome symptom... exhausting. Yep, that hollow eye look. Pale, puffy eyelids, frequently inflamed...I also have to remind myself to sit straight, when I do have the energy. But not always possible. Sending everybody out there hope, courage and a spark of happinnes to keep us going🙏🌟
Changes in me that could be noticeable from before I was ill are:- Waxy looking face Grey eyes Yellowy skin Hair loss/thinning Muscle twitches Breathlessness Spots and ulcers Weight gain and weight loss Slurred speech Bleeding gums Body odour and bad beeath Hunched posture Laying down all the time, and sleeping during the day Clenching/grinding teeth Being oversensitive to smells, light etc Being unable to take medication due to severe side effects
The medication allergies & adverse reactions. You hit that nail on the head. I'm the poster child for "rare" side effects, such as psychosis. This 💩 sucks!
For me vision is a big one. I went to renew my driver license and almost did not pass the vision test!!!!! I had to squint and try 3x. Luckily I told the lady I had something in my eye and was also coming off of a migraine headache from last night. Lol. I have appt with my eye doctor next month because I truly fear that in 5 years when I have to renew again I just might fail. I am only 50 y.o. right now. Scary. I have trouble opening my eyes when I am tired. I squint a lot. Swollen and itchy eyes. I get facial rash similar to lupus. Butterfly rash on face. I still suspect I could have lupus as well. I am unstable on my feet and have had my legs go weak at times and fallen down. I get tremors in my hands and shaky in my legs and arms. Speech can be hard. Issues with word retrieval and sometimes I will stop mid-sentence and not be able to finish. It is embarrassing. I find it interesting you mention sitting up straight. I sometimes cannot sit for long periods of time, and yes, my posture is weaker when standing and walking. I can have trouble walking, too. Limping or stiffness due to weakness or muscle/joint pain. Sciatica is something I get bad on my right side mostly. In a flare. Not to be gross, but I can have gastroparesis during a severe flare, and I can have nausea and vomiting episodes. That is about all I can think of right now.....🙏
You just listed everything going on with me + I have many more illness’s so it’s very hard to figure out which one is causing what. The bags under eyes surprised me !
I also bruise easily plus everything else you mentioned. I have six autoimmune diseases altogether plus 3 herniated discs in my neck, spinal stenosis, spinal arthritis, major depressive disorder, generalize anxiety disorder, cptsd can be a trigger for a flare with me. Thank you for sharing your story. ♥️
The most noticeable with myself is my eyes go redish, resulting in blurry vision , my speech gets slurred and unsteady on my feet,and leg's twitching , thanks for your videos,take care
I'm identical too!!.Drs. then think I've had a stroke as my feet also drag & don t walk.Shocking visually exactly as you described.All symptoms as in video except hair loss.🍀all the best it's a hell of a disease & existence😢 🍀😊
Thank you so much for this Video Especially, Johnny❤. I have ALL those Symptoms & ++ too of course,but I've NEVER Heard them mentioned.Stunned to actually HEAR all this for 1st time & I'm a very long-term diagnosed severe Sufferer. Thank you so much for all your ongoing videos,support & info,fantastic ❤😊
Dr Mark Hyman is covering some things on his channel that might help. He did an interview today on autoimmune issues, and it made sense to me. I do take MSM and liquid cell food by Lumina. Saved my life. Traditional doktors have no clue what we are experiencing.
wow i get those as well. i thought for a while i had ms because i struggled opening a bottle of coke, but its not constantly that bad. my worst issue is hip pain when i walk, i have gotten a walking stick now, but i try not to walk far. i also get these pains in my back, almost like spasms so if i try to pick weeds, it gets so bad i cant move.
Has anybody seen the episodes from The Golden Girls where Dorothy gets cfs? It was very good especially where she gets to tell one of the dr’s off that she had seen who told her she wasn’t sick she was depressed. We’ve all heard that from one or more dr’s. I hope that med students are learning about cfs and how real it is. I was 46 and very active when I hit the brick wall called cfs and the only one who knew something was really wrong with me was my husband. Family thought I was faking to get out of going to work. I lost all my friends cuz I couldn’t keep up with them anywhere anymore. You lose more than good health with cfs. My husband saw me go from getting by on 5 or 6 hours of sleep to sleeping all day long. Cfs is all too real.
EVERYTHING!!😮 After 33yrs. I can with all the truth, say yes..Some things that I had forgotten.Now the "aging factor" has reared its "untimely"(I feel as though,maybe not at the "top" of but at least "in" the game) 😢 head. I often use your videos, as a reference point or to explain at a given time to explain to a "medical" lay person, also when it comes to a complex symptom, also to (PROFESSIONALS) it is such a help!Often a lifeline for "them"😂.Yes, pain will do that to you. Bless you for getting it out there, like you do😵💫😅. 💞 🙏
the bags under my eyes are insane - i have always had deep set racoon eyes - but after i got sick i actually have layers of puffy bags, the skin is actually differently coloured - it's bad
I also have these visible symptoms. My balance is awful! Does anyone else have nystagmus? My eyes move involuntarily sometimes. My favorite way to beat the tightness in the upper chest and shoulders is to lay on a foam roller. It really opens up that area. It's been a game changer for me, and my posture is much better again.
@@fight4me747 ❤😊Just turning this off 4 night & saw this.Your fantastic the way you present yourself & describe everything shame you can't go & do lectures for Dr's Education,its a terrible situation M.E.people are in❤😢
Nicwly stated, tu, yes wasting away is VISIBLE, compated to the massuve imvisible nausea, dizzy, gi cramps, numb tors, burning, etc, mine is from long COVID, , but had lots of conmorbidities b 4..covid tipped me over, tu 🤣🤗💯
There was another guy who recovered from cfs who thinks it’s a hypersensitive nervous system issue I’m not sure if that’s accurate but there’s a guy on RUclips. He’s got a channel and yes, these people recover from cfs he thinks that just putting it all under hypersensitive nervous system issue however I don’t have CFS and I am no expert. I’m just going by what he saying. This sounds awful. I think having Vocal cord dysfunction is uncomfortable however this sounds more uncomfortable and debilitating
Unfortunately it is extremely rare to recover from M.E. ME/CFS is much more complex than a hypersensitive nervous system. Many people who say they recovered, often times were not diagnosed with ME or were misdiagnosed.
@ maybe possibly miss diagnosed or what works for one person may not work for another his name is Miguel and he had it rough bed ridden however again I’m no doctor or whatever I guess what works for one person may not work for another
Gentle hug,,, I think you are my ME brother from a different mother 😂 🥹. Thank you for keeping us sane by expressing what’s going on in your life than is so similar to many of us! I have Lupus and Complex Trauma. All this junk plays on each other to the point you just avoid because to the average world we appear like an attention seeking hypochondriac . Thank you for mustering the strength to create these videos. I’m sure it takes everything in you to create them. Love & prayer’s from Indiana
![Twenty One Pilots - “The Line” (from Arcane Season 2) [Official Music Video]](http://i.ytimg.com/vi/E2Rj2gQAyPA/mqdefault.jpg)
Full Version here ➡ ruclips.net/video/G1P5FrwRL6U/видео.html
Thanks Johnny, great topic.My jaw dropped at all those symptoms as I have them ALL ++ too ,but NEVER heard them mentioned. Very long term diagnosed severe M.E. sufferer.You are my only support & I appreciate all that you do & I NEVER forget you're suffering too.All the best & I'll be following you til the day I drop❤😊
Same... I am a former athlete and my legs became thin straight away. Blurred vision. Muscle twitching. The gut is probably THE most tiresome symptom... exhausting. Yep, that hollow eye look. Pale, puffy eyelids, frequently inflamed...I also have to remind myself to sit straight, when I do have the energy. But not always possible.
Sending everybody out there hope, courage and a spark of happinnes to keep us going🙏🌟
You are a fight4 for ME hero ❤
Thank you and thanks for watching
...all the same here. Thank you for these videos; causes me to realise these things ARE M.E. related.
Changes in me that could be noticeable from before I was ill are:-
Waxy looking face
Grey eyes
Yellowy skin
Hair loss/thinning
Muscle twitches
Breathlessness
Spots and ulcers
Weight gain and weight loss
Slurred speech
Bleeding gums
Body odour and bad beeath
Hunched posture
Laying down all the time, and sleeping during the day
Clenching/grinding teeth
Being oversensitive to smells, light etc
Being unable to take medication due to severe side effects
The medication allergies & adverse reactions. You hit that nail on the head. I'm the poster child for "rare" side effects, such as psychosis. This 💩 sucks!
For me vision is a big one. I went to renew my driver license and almost did not pass the vision test!!!!! I had to squint and try 3x. Luckily I told the lady I had something in my eye and was also coming off of a migraine headache from last night. Lol. I have appt with my eye doctor next month because I truly fear that in 5 years when I have to renew again I just might fail. I am only 50 y.o. right now. Scary. I have trouble opening my eyes when I am tired. I squint a lot. Swollen and itchy eyes. I get facial rash similar to lupus. Butterfly rash on face. I still suspect I could have lupus as well.
I am unstable on my feet and have had my legs go weak at times and fallen down. I get tremors in my hands and shaky in my legs and arms. Speech can be hard. Issues with word retrieval and sometimes I will stop mid-sentence and not be able to finish. It is embarrassing.
I find it interesting you mention sitting up straight. I sometimes cannot sit for long periods of time, and yes, my posture is weaker when standing and walking. I can have trouble walking, too. Limping or stiffness due to weakness or muscle/joint pain. Sciatica is something I get bad on my right side mostly. In a flare. Not to be gross, but I can have gastroparesis during a severe flare, and I can have nausea and vomiting episodes. That is about all I can think of right now.....🙏
You just listed everything going on with me + I have many more illness’s so it’s very hard to figure out which one is causing what. The bags under eyes surprised me !
Do you have fybromyalgia to
I also bruise easily plus everything else you mentioned. I have six autoimmune diseases altogether plus 3 herniated discs in my neck, spinal stenosis, spinal arthritis, major depressive disorder, generalize anxiety disorder, cptsd can be a trigger for a flare with me. Thank you for sharing your story. ♥️
Thanks
The most noticeable with myself is my eyes go redish, resulting in blurry vision , my speech gets slurred and unsteady on my feet,and leg's twitching , thanks for your videos,take care
Exactly the same for me
Thank you for your reply,it helps to know you are not alone with this awful illness @@TheLynxsRealm
Exactly the same too!! Identical.then Dr's think you've had a stroke. worse I am worse all are.I can't see at all at times.
I'm identical too!!.Drs. then think I've had a stroke as my feet also drag & don t walk.Shocking visually exactly as you described.All symptoms as in video except hair loss.🍀all the best it's a hell of a disease & existence😢 🍀😊
Thsnk you. You have a calming approach. You are so sincere not all smiles all the time but so pleasant. Only those with these symptoms understand.
Nausea and sensitve to cetain smells is an issue as well. I also have fibromyalgia. Been over 20 years. Haven't had the vision issues though
Thank you so much for this Video Especially, Johnny❤. I have ALL those Symptoms & ++ too of course,but I've NEVER Heard them mentioned.Stunned to actually HEAR all this for 1st time & I'm a very long-term diagnosed severe Sufferer.
Thank you so much for all your ongoing videos,support & info,fantastic ❤😊
Dr Mark Hyman is covering some things on his channel that might help. He did an interview today on autoimmune issues, and it made sense to me. I do take MSM and liquid cell food by Lumina. Saved my life. Traditional doktors have no clue what we are experiencing.
wow i get those as well. i thought for a while i had ms because i struggled opening a bottle of coke, but its not constantly that bad. my worst issue is hip pain when i walk, i have gotten a walking stick now, but i try not to walk far. i also get these pains in my back, almost like spasms so if i try to pick weeds, it gets so bad i cant move.
Has anybody seen the episodes from The Golden Girls where Dorothy gets cfs? It was very good especially where she gets to tell one of the dr’s off that she had seen who told her she wasn’t sick she was depressed. We’ve all heard that from one or more dr’s. I hope that med students are learning about cfs and how real it is. I was 46 and very active when I hit the brick wall called cfs and the only one who knew something was really wrong with me was my husband. Family thought I was faking to get out of going to work. I lost all my friends cuz I couldn’t keep up with them anywhere anymore. You lose more than good health with cfs. My husband saw me go from getting by on 5 or 6 hours of sleep to sleeping all day long. Cfs is all too real.
🥀 SPEECHLESS 🥀To hear this = Me Exactly.many thank to you J.🥀
And thank you. We all feel so left out.
EVERYTHING!!😮 After 33yrs. I can with all the truth, say yes..Some things that I had forgotten.Now the "aging factor" has reared its "untimely"(I feel as though,maybe not at the "top" of but at least "in" the game) 😢 head. I often use your videos, as a reference point or to explain at a given time to explain to a "medical" lay person, also when it comes to a complex symptom, also to (PROFESSIONALS) it is such a help!Often a lifeline for "them"😂.Yes, pain will do that to you. Bless you for getting it out there, like you do😵💫😅. 💞 🙏
the bags under my eyes are insane - i have always had deep set racoon eyes - but after i got sick i actually have layers of puffy bags, the skin is actually differently coloured - it's bad
I also have these visible symptoms. My balance is awful! Does anyone else have nystagmus? My eyes move involuntarily sometimes.
My favorite way to beat the tightness in the upper chest and shoulders is to lay on a foam roller. It really opens up that area. It's been a game changer for me, and my posture is much better again.
Was the upper body pain daily are you hypermobile
@@Truerealism747 I'm in the process of being evaluated for Ehlers Danlos, but nothing definitive yet.
@@Truerealism747 yes the pain was daily
Hi Johnny how are you doing? Hope you're OK❤😊
Im the same, ups and downs. Thanks for asking
@@fight4me747 ❤😊Just turning this off 4 night & saw this.Your fantastic the way you present yourself & describe everything shame you can't go & do lectures for Dr's Education,its a terrible situation M.E.people are in❤😢
Nicwly stated, tu, yes wasting away is VISIBLE, compated to the massuve imvisible nausea, dizzy, gi cramps, numb tors, burning, etc, mine is from long COVID, , but had lots of conmorbidities b 4..covid tipped me over, tu 🤣🤗💯
Try Pilates. I do it twice a week, when I can. Sometimes I go a week without being able to. But take it easy.
P.s Only symptom I haven't had is clumps of hair falling out but my hair has changed a lot & looks dreadful❤😊
There was another guy who recovered from cfs who thinks it’s a hypersensitive nervous system issue I’m not sure if that’s accurate but there’s a guy on RUclips. He’s got a channel and yes, these people recover from cfs he thinks that just putting it all under hypersensitive nervous system issue however I don’t have CFS and I am no expert. I’m just going by what he saying. This sounds awful. I think having Vocal cord dysfunction is uncomfortable however this sounds more uncomfortable and debilitating
Unfortunately it is extremely rare to recover from M.E.
ME/CFS is much more complex than a hypersensitive nervous system. Many people who say they recovered, often times were not diagnosed with ME or were misdiagnosed.
@@fight4me747 ruclips.net/video/dIHaLeWYmOI/видео.htmlsi=l3ABkFq0T1VECc1R
@ fair enough
@ maybe possibly miss diagnosed or what works for one person may not work for another his name is Miguel and he had it rough bed ridden however again I’m no doctor or whatever I guess what works for one person may not work for another
Gentle hug,,, I think you are my ME brother from a different mother 😂 🥹. Thank you for keeping us sane by expressing what’s going on in your life than is so similar to many of us! I have Lupus and Complex Trauma. All this junk plays on each other to the point you just avoid because to the average world we appear like an attention seeking hypochondriac .
Thank you for mustering the strength to create these videos. I’m sure it takes everything in you to create them.
Love & prayer’s from Indiana