CFS Symptoms: List will shock & surprise you
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- čas přidán 3. 06. 2024
- CFS Symptoms are often thought to be just fatigue, but if you look in detail at the symptoms Chronic Fatigue Syndrome (ME/CFS), you might be shocked to see the answer. This video lists the symptoms and for more details, see the full article: cfsunravelled.com/chronic-fat...
This ME/CFS ADVOCACY Video: also lists many CFS symptoms that people experience: • People do NOT know thi...
People usually think of fatigue as the main symptom of CFS or Chronic Fatigue Syndrome and Myalgic Encephalomyelitis (ME/CFS). However, there are many more symptoms.
We detail the list of core CFS symptoms (also known as SEID symptoms) in this video as well as the comorbid conditions of the illness that many people experience.
Even a more detailed list of CFS symptoms is scrolled, much too numerous to discuss in detail, but to give you a great understanding of just how long the list can be.
One of the key concerns with so many symptoms that people experiencing ME/CFS experience is that it leads to some really unhelpful myths which we discuss briefly. It can also be quite dangerous because constantly getting more and more symptoms can lead to behaviours that can be downright dangerous.
If you have other questions about CFS symptoms, please leave a comment below!
Please feel free to share a link to this video explaining what the symptoms of CFS are using this link: • CFS Symptoms: List wil...
#CFSSymptoms #GetYourHealthBack #MECFSRecovery #MECFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PosturalOrthostaticTachycardiaSyndrome
**MEDICAL DISCLAIMER**: Dan Neuffer, CFS Unravelled or ANS REWIRE do not provide medical advice, and the information available in this video does not offer a diagnosis or medical advice of any kind. The content is opinions and information presented for EDUCATIONAL PURPOSES ONLY, and MUST NOT be used as an alternative to a healthcare professional's diagnosis and treatment. Only a physician or other licensed health-care professional are able to determine the requirement for medical assistance. Please seek the advice of your physician or other licensed healthcare providers if you have any questions regarding a medical condition.
What is your most frustrating CFS symptom besides fatigue?
Head pain feeling like head is in a vice
Rashes, skin feel like it's getting burned by a blow torch then being rubbed with sandpaper, and the spine pain along with the shoulder blade muscle cramps, the I C , moody from not sleeping and not being able to clean my home and do gardening, cooking and eating, the list is long .
optic nerve cramps as sucks your eyeball into your head and theres no way to ease it , chrondilitis (rib muscule swelling and ripping or bad cramps, you can drop a dress size so not all bad lol) and when your chest lining swells up coz it feels like your lungs are encased in wet sponge, All of these are difficult to elivate .
I also wanted to ask your thoughts with M.E/ C.F.S and scarring on the brain stem as the humminbird insitute has found that all suffers have this .
For context i got this at 10 years old after a very high fever , i was given a diagnoisis at 20 and im a 45yr old female .
Leg weakness and inability to move anywhere. Pain and weakness
If I try and do walking the day before I’m couch bound. No good sleep wake 3 am
Have been through this pretty much all of my life probably from age 12 and now I'm 61. It's like you often almost get punished by confusing, debilitating or randomly changing, scary, repetitive symptoms anytime you try to think or do something.
I just pray people begin to understand it and not punish their loved ones. it's hard enough to survive at all with this, to afford survival, to live in poverty & destroyed potential - moreso to hold the high dream of somehow miraculously managing to afford help to grasp at some relative wellness. To live with this when people don't understand is crushing.
Not trying to break anyone's heart here. We who suffer are already broken, but working to stay positive, alive. I just want anyone close to a person with this to know, understand & to be able to get it.
Hey, you can recover from cfs. I recovered after only about a year. I would look on CZcams about recovery and try to implement some of the stuff there. Best of luck!
@@PeachBoiASMRIf you truly knew how it feels and therefore actually is, you’d provide at least a few of the sources that you say helped you.
Very well put. I'm 62 started when I was 26.
22 years for me, it’s a life killer. I’m nearing the end of what I’m willing to tolerate and fight for. There is no end of the suffering that I can see anymore.
Did they ever test you for a spinal fluid leak? The major symptoms are uncannily similar.
Its especially brutal if you dont have anyone looking out for you, which is why capitalism sucks so bad, the millions that must suffer with this with no hope, stay strong, find a life worth living
13yrs for me, bedbound since 2016 with Fibromyalgia & weird (extreme)neck spasm that I believe is Dystonia, it’s difficult to breath & speak in my normal pace, my short & long term memory is extremely bad & I have the MS hug symptom (I suspect MS) now & issues with the gut IBS, horseshoe kidney that has caused 4 kidney stones
, I also have asthma (which is ok, however breathing normal while managing extreme pain is impossible & especially the pain in the neck/back area & difficulty raising my chest up & down & pain in the upper part of my stomach(supposedly gerd, use meds that help a little with the upper stomach pain) possibly issues with thyroid etc I have so much fatigue, pain, seizures & don’t get the money or helped I’m entitled to while not getting the support I need from friends & family...
Julian, it takes lot of courage to fight it so long, so salute you! I am taking lot of positive energy from you. Please consider LDN if your doctor can prescribe you. In India we do not have such possibility, you can try as I have seen in many forums. Hope you will get well soon, from bottom of my heart! All the very best.
I suffered from it for a long time too but after I had post concussion syndrome for a head injury I tried upper cervical care and it worked for both issues! If your C1 neck bone is out of position it can cause a lot of symptoms because it is interfering with the spinal cord.
It’s amazing to be validated! I think the best way to describe the fatigue to ppl who don’t have it is to imagine working a grueling 10 hr day of hard labor. You go to bed and knock out and then have to get up and go pee in the middle of the night. But imagine instead you’ve slept 14 hrs and you still feel that way. You just want to go back to bed but you have life to do. Every free moment is spent sleeping. You’re kid goes on vacation with your sisters family for three days and you imagine what you can do with 3 days of freedoms from a 3 yr old. But instead you decide to take a nap. Then you wake up 3 days later when she’s brought home, just as tired. You haven’t eaten. You’ve done nothing but sleep, drink some water and go to the bathroom. It feels like you slept 20mins. That was me at my worst. A new single mom still breastfeeding and you wake up one day but don’t really wake up. And it never goes away. I’m better then I was from changing my diet but it’s still not good enough bc all the joy gets sucked out your life bc your always exhausted. I try and stay positive bc at least I don’t fall asleep on my feet anymore. But I still feel worn down by this illness and the lack of knowledge of the drs I go to. I actually got better the most on my own after giving up on Drs when they kept asking if I thought about seeing a therapist. Also the closest I ever came to punching a dr.
Hey, I just read your comment. I hope you're 9kay and doing much better!
As Dr. Majid Ali said, a disease does not exist until there is a drug for it.
One day there will be a drug for it and suddenly MDs will enthusiastically say CFS exists.
Have you tried a rheumatologist?
👌👏👏👏👏👏 ✨ 👉 Totally agree w/your comments & experience... Then add Chronic Lymes, Lupus, CIRS, ME, Fibromyalgia, Spinal Fluid Leak, Cervical Spine Damage & Instability, serious Spinal Stenosis & Spondylosis, Vascular Ehlers-Danlos {extremely fragile Veins & rigid Nerves} Articular Sclerosis,, POTS, Deep Vein Thrombosis, re-occurring large Tumors, horrible Autonomic Storms, Tinnitus, Neurological Sleep Apnea, Enlarged Congestive Heart & Mitral Valve Prolapse & injuries from being assaulted & ignored by 6 Drs for over 6 mos~!!¿!! Add to to this: Environmental toxicity that has pervaded our homes, lungs/health & community for decades from a 100 yr old known issue from an over expanded, immorally mismanaged metal foundry & other decades of 100's & 1,000's of Tom's of cumulative highly TOXIC heavy metal concentration of plating & aluminum processing plants that have been habitually & nefariously catered to w/public tax $'s, tax abatements & hefty utilities discounts that are not 9fderd to those of us who are struggling from the highly toxic affects of these highly profitable & immorally-run corp,{ses}, their CEO's & CFO's & legal eagles {look-up what the word 'legal' & compare it to the definition of 'lawful' & you will have an 'awakening' to what those who 'created' this system have in mind & WHY we are both so physically sick & disabled & dying earlier & from more 'unexplained' & not-so-'myserious' deaths & are then financially devastated seriously 'under regulated' by EPA / IDEM & our local health depts & 'corp.{se}' medical Dr.s ~> ALL 'corp/big pharma-influenced & restricted 'practices' & operating under immoral, unethical, careless & often highly questionable, dangerous, haphazard, radical &/or unproven protocols becoming known for their "LACK" of empathy, human compassion, moral ethics or conscience, integrity & accountability~{w/very few 'rare' exceptions'!} They seem 'void' of any human emotion or traits & lack the very essence of what we seek medical help for~& are less & less interested in listening, consider what is being expressed & suffered & take their very ill patients seriously...& "DO NO HARM"...NO interest in doing thorough physical examines for seriously ill patients, or even listening to your lungs & heart w/an enlarged congestive heart & mitral valve prolapse or any of the other afflictions that have increased & multiplied making life so difficult to navigate from day-to-day...
No interest in seeing chronically I'll & disabled patients more than 3 or 4 times & 'farming' them out to 5 or 6 other 'so-called' specialists ~ that most of which are so egotistical & narrow-minded & not interested in sharing findings or assumptions & the info & results they obtain...just getting copies of MRI's & access to things like 'my chart' is a joke & getting more & more difficult & when you do ~ you often find that the Dr. either wasn't telling you the whole truth or mis-read/mis-interpreted the results which they will argue & project other unfounded behaviors & negative attitudes onto you ~ if you point this out & expect them to correct their serious oversights, carelessness & yes 👉 "mistakes"...they make them far more than they used to 30-40 yrs ago & our quality of healthcare is 👉 NOT improving~!!!
Moreover it is disintegrating, OVER-PRICED, OVER-RATED, RADICAL, UNAFFORDABLE & INEFFECTIVE 👉often causing "MORE" serious issues than you initially had...& "MOST" of what is making us sick ~👉 is making corrupt corp.{ses} & their Dr.s & the CEO's & executives of those operating under corrupt monopolizing 'corp.{se} status's...
They are not patriots or upstanding I'm individuals...can't & won't even 'look you in the eyes when you have an appt...too busy looking at their computer screens entering derogatory & unfounded info to corrupt your medical care & records & 'protect themselves' w/false & careless documentation should you call them out & want REAL, SAFE & EFFECTIVE, AFFORDABLE HEALTHCARE or "have educated yourself far more than what the Dr. is willing to 'acknowledge' & note ~ which these days...isn't much ~ from my 50+ yr experience~!! ...& Getting worse~!!
No concern/'NO fault'/No conscience or empathy attitude seems to be the 'REAL epidemic' in our govt., educational & medical systems, EPA, FDA, Medicare, HHR, CDC, NIHAIDS & others...not protecting 'us' & don't care & not properly following-up on a 'timely or efficient basis' & we are as a result ~ then ~ subject to an ineffective/insane/inhumane & non-functional 'system' also sorely 'under-regulated' & not 'reigning-in' / calling-out & holding accountable these CRIMINALS & CRIMES AGAINST HUMANITY...
We are slowly waking-up to the TRUTH of what is really making us sick & what's more: Our Dr.s are facilitating & fostering it~!!! {But, for a rare few 'gems' like this fellow & there are many using social media & the internet to get the Truth out & reach more people than they would in their general field of medical 'practice'... {A 'key' word...why be 'practiced & experimented-on' when their are "Medical/Patients' RIGHTS" & much 👉 BETTER / SAFE / PROVEN & EFFECTIVE NATURAL PROTOCOLS & THERAPIES that most corp.{se} hospitals & medical practices REFUSE to ACKNOWLEDGE ~👉 or HONOR ~👉 or RESPECT their PATIENT's WISHES, REQUESTS & RIGHTS ~👉 contributing to more needless SUFFERING ~👉 & you really have to ask yourself "WHY"~???
We "KNOW"...just been in denial & deprived of quality medical/healthcare for so long...it has become a sad reality & way of life...
My question is: WHY are WE paying for ALL of this gross medical negligence & WHY aren't those responsible for making a 'KILLING' off of making us so SICK & DISABLED~???
Shouldn't the culprits & those content & catered to in these undeniably 'corrupted & broken' systems be held 👉 "ACCOUNTABLE" for the pain, suffering & lack of moral ethics & integrity be the ones FOOTING the BILL~ & forced to clean-up their act &/or be prosecuted for their obvious CRIMES AGAINST HUMANITY~!!
WE NEED TO ELIMINATE this systems & procure & create a NEW & BETTER ONE~!!! AMEN ✨🕊️🙏-ing for better days, better health care & PEACE of Mind, DIVINE INTERVENTION & JUSTICE for us "ALL" ~!!! 🕊️✨💜✨⚖️✨🎆 🙏 😉
☝️...More A.I. glitches☝️in 'typos'☝️ appearing in comments... {Surprised it even allowed to post~!¡!} As there were 👉 "NO TYPOS or ERRORS" in my "ORIGINAL" composition & POST 👉 until I 'posted' it...¿?¿
Don't you long for the days when you could 'count-on your own abilities' to type 'accurately' & spell-check 'actually worked'~??? ...& You 'knew' once you 'proof-read & edited' your text or email info...it would be sent & / or posted as it was "originally" typed & submitted~???
Those of us, who are very 🤢 ill, disabled &/or the most sensitive & outspoken & trying to SPEAK the TRUTH & share our experiences & medical / healthcare nightmares & demand JUSTICE are the 🤐ne's being 🎯 'targeted'~😲¡!¡ ✨😉✨⚖️✨🕊️✨🎆 ...but, a day of reckoning is JUSTICE IS COMING~!! I trust & 🙏 pray we live to see & experience this ~ in ALL it's GL🎆RY~!! Amen~✨🕊️✨💜✨⚖️✨🎆
Doctors say everything is depression or anxiety! Mine did but now we are unearthing more positive test results and labs. I thought being COMPLETELY honest to people about my struggles would help. Nope. STILL after a while having to prove yourself gets too irritating. People look at you like your either crazy or your faking it!😢
So true - not fair is it!
Yes! Im SO sick and tired of having to explain and try to prove my daily hell, especially aince the end result is still being judged and not understood, and accused of being hypochondriac. If they would live for only one week in our body, so they can get it once and for all.
After 10 years and numerous surgeries I developed fibromyalgia/ CFS the lack of understanding by those you expect to support you is one of the most heart wrenching parts of the entire situation
Isolation, and depression are definitely a by product from lack of support besides our innate response to always fight to get better
I have done this whole psychological acceptance In order to not to feel so defeated
Fibro warriors are the strongest people on earth!
You're right, it's exhausting! And then when they finally believe you they get sick of you having an illness/hearing about it.
It is utterly exhausting on a daily basis to either hide it all away & find the energy to fake it in front of others, or to feel pressured to explain why you are sick one day & not the next.
Great video, 4 years ago I got CFS. Changed my world. Yet the people around me still don’t want to understand. Make me feel worse about my self every day. Praying I get better soon. I feel like a zombie.
I'm so sorry Rosey I've had for 27yrs. And still people do not get it it's hard enough to go through this horrific illness... without no one but others like us will ever get it hang in maybe they will get a cure for you soon 💙🙏
My favorite line is you are just a lazy bum. Gimme me a break
What I've noticed is that the doctors automatically say your depressed well heck yes I am and it's because I'm so exhausted. Situational depression. Depression medicine is not going to help at all. Why? Because it's situational depression unless my situation changes depression medicine is not going to help! Wish that doctors would understand that!
I think for a lack of options
I've found Skme folks suggesting Gaba and it seems to fit the bill
Me too! I went on anti-depressants for three months - They just made me numb mentally and unable to express emotion. The thoughts and patterns were still there. It was a very confusing feeling.
Yup the knee jerk you are delusional because you are depressed, here have some antidepressants gets old. The gaslighting 💀
😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭 This is my life. My soul is so sad. God have mercy on me and anyone who is affected by these horrible symptoms. 14 years of this and getting worse. Thank you sir for this video.
I am in the same shape, I am 57 now .Had this since I was 12 years old. It hurts when people , neighbors call me the weird person. No one understands. I often want to just give up. God bless you,
You are not alone. Many of us are going through the same thing.
Since 2018, and I finally got the diagnoses of CFS/ME and Fibromyalgia. They’ve been testing and testing for years. Finally met a rheumatologist and neurologist that listened. Trying more to be better. I would love to even get back 50% to what I used to be.
I feel like I'm suffering from this because of covid 19. I get chills, sore throat, mild fever everyday. It's been several months. I hope for the best for anyone who's affected by this
Maybe it is, you can get it from a virus too
I’ve been on this CFS roller coaster since summer of 1990. Came down with “the flu from hell”. Severest symptoms aren’t as bad, but I’m no where near living what most would consider a normal life.
Symptom treatment is all the medical treatment one can hope for from the medical community. It helps but there’s no “magic pill”.
It can wear you down. Support groups can help. Back in 1990, I felt like I must’ve been the first person to ever have contracted it. But suddenly, I found I wasn’t alone when watching a town hall meeting on local television. People like me were there. Telling “our story”. The relief of hearing others stories made me feel so much less alone in this.
Thank God the stigma has lifted a lot since then, but there’s a long way to go, too.
How r u today did u had panic attacks those days
How havent u recovered in these 35yrs?
Me, too since 1991, after being hospitalized for meningitis in October 1990 (after getting tetanus/meningitis shot in order to receive stitches for my cut finger)…… the psychosomatic/ depression position from doctors cause victims to continue to do more than they should or can. Gaslighting. All a diabolical test run by people like fauci….
The injections spread the infections…. Then the databases help the mad scientists see how their evil games are working…
It's absolutely hell. I've had it since 1999 ,it just destroys your will to live.
One day 25 years ago it was like i had an on/off switch and someone turned me off and the symptoms hit me like a steam train, i have lived my life as long in illness as i have in health and doctors have been useless.
Well put regarding "on/off switch" but aint that like many diseases such as cancer. One minute were fine and the next we aren't. My doctor prescribed cyclobenzapr for night and then we are going to try Savella for day time. Hope you can get help with your symptoms!
Something hurt you very much twenty five years ago and you stuffed it.?
Did some one betray you ? Is it bitterness ?
Hate, unforgiveness ? Are you withdrawn, alone in most of your life? Are you suspicious ?? about others and then scorn them with your opinion..? Do you talk to yourself sometimes in public and then feel crazy? Do you think your ugly and your body needs fitness...? Do you keep company with negative, opinionated, know it all accusing people ? Who are sick because of the secrets they keep...? Are you using anythig that alters the mind ? Side effects of Rx too..Are you Stuck !
You might be carring a burden..hanging around sad sacks or just unforgiveness and bitterness... Just tired that life is hopeless sometimes..YOU are a buman, not junk..let go of that resentment and unforgiveness ! You cant change that, you yourself have hurt others, most of us have.. All it does is poison you mind and soul and compromise s your focus !
Let it go, look around some people want to love you for free and God does too..
Take care..
Its over let it go !
Some people want to love YOU
Me too
Yep.
Dr's are useless because they are part of a system that wants people sick and buying meds.
Wish I could show this to everyone that keeps saying they think they're fatigued. No, youre just tired, you have NO IDEA unless you actually have it.
Totally, advocacy is still important. Perhaps THIS is the video to show people???? czcams.com/video/esml2z8gKFc/video.html
True..its so difficult to explain..even to your own self..I am actually feeling too tired to type this lol...Trying hard to get back on track
My body is aching, fatigued and joints are aching, but I think I got the flu or anemia
does anyone get hot and cold chills from one min to another? without a fever. ? its unbearable ...gentle hugs yall x
Hi Tracey defo get the the cold chills cold hands and feet even in a warm day got diagnosed with cfs a year ago its been hell take care👍
Like thevideo says, best to check that it is just another cfs symptom and not some kind of sepsis or problem in the body caused by tooth \mouth infection .
I get this all the time! Chills without fever, also suddenly feeling like I'm boiling when no one else is hot at all. I had a long Covid appointment today where I was told this is caused by dysautonomia.
Yup get this
I was diagnosed with ME in 1993, this video described my conditions symptoms 100%.
Then worse thing is and has been the total lack of belief and understanding from the medical profession.
Yes, it's really adding insult to injury. The key is to connect with a physician that is better educated - never put up with attitude!
I had a doctor tell me I can’t be that bad becouse I walked in. Cause they didn’t bring me in on a stretcher. I was so taken back I said nothing and just walked out. If tbe next one does this I will chew tbem out
Thanks ever so much for this film, it makes such a difference to a huge amount of folk to be validated!
My life was before severe /ME and after. Ambitious , sporty , perfectionist& driven. Was famous for juggling 100 balls at same time. On top of the world . After emergency c-section With a baby ended up in wheelchair! Yes it is all in your head, you have depression etc after 3 year of different diagnosis like MS etc told me you have FM/ME. I cried atleast knew am not crazy. I know now that I burnt myself & my body out. I lost my career as pharm D. Still no one understand & gets me. Still do too much for my family . This year became 50, and DT2 as well due to reduced mobility . My cortisol has been x20 normal levels and that makes it difficult to lose belly fat. If I could live in deserted island , with no responsibilities and no one to expect too much of me, I would feel better. I am never pain free even with fentanyl patches , SSRIs etc .
You are exact on your explanation. I have 95% if not all of what you said. It's so hard to keep on living. What the hell happened to me!?
I say ANS dysfunction happened to you! Have you seen the videos explaining how the symptoms get created? - czcams.com/play/PLYGv2houTixmGYA8zCMhT_MSlagF0UsQE.html
I used to be an elementary school teacher! It is very hard to keep going. I hear ya!
Mold exposure?
My aunt had CFS since the 80s. She passed in 2018. I wished I had found this channel for her. Thank you for these videos.
Glandular fever and tonsillitis 30 yrs ago, very bad childhood, depression, never recovered had good times bad times, swimming helps a lot, you have to find strength it’s not easy, I still suffer I have had 3 operations on my spin pneumonia and blood clots but I’m alive, happy day and sad days, this started 30 yrs ago as I said and I was very ambitious worked 7 days a week but partied as hard, my mum said when I crashed with whatever illness this is it saved my life. Sometimes I think I would had rather gone on till I did died than live with this for all this time, I am now disabled from a motor bike accident but I still fight, it’s just human nature to keep going. Have I thought of suicide yes many times but I won’t and trust me i felt as though I have reached rock bottom but I’m still here. Much love to you all that suffer whatever this infliction is.
It's a pretty tough illness and really critical to reach out for professional help whenever you consider any self-harm, so make sure you do that. But whilst there is no magic cure, people do recover from this illness, even after many years of being ill. Check out the recovery stories, hopefully you will discover some and hope in them.
I wish more doctors would look into the connection between mycotoxicosis (systemic fungal infection / mold illness) MCS, MCAS, POTS & ME/CFS
If you have it...you know....i have fibromyalgia too and sleep apnea
no hypochondria for me thanks , was asking a psychologist if i were hypochondriac and she said that anyone who asks himself or herself this question definitely is not , hypochondriacs do NOT ask this question
Absolutely! But it can sure feel like it at times can't it!? We often think "how can so many things be wrong!?" That in my view is the biggest clue as to the root cause of the illness.
@@CFSUnravelled1 So, do you still believe both this and FM are caused by dysautonomia? I was thrilled to see you going that direction, since I have believed that to be the case for the entire 33 yrs. I've had them. I tend to see FM as sympathetic dominant and CFS as parasympathetic dominant, though we can have both if our ANS is dysfunctional enough. What causes the dysautonomia is then the next question.....any ideas?
Here is the link to the first of 3 videos that explains this! czcams.com/video/xINZnfAB5G8/video.html
Nice video, but I it's missing some of the core symptoms, especially muscle weakness and/or muscle fatiguability. These symptoms are very important, because they help distinguish ME/CFS from "chronic fatigue".
Simas P: Is muscle weakness/fatigue a Chronique fatigue symptom or ME/CFS symptom? Thanks a lot?
Angelheart 76 It’s a Me/Cfs symptom
Yes, if I push too much I start stumbling around like a drunk and slurring my words and I don't drink. It's just from the muscle weakness and fatigue.
You're right, i suffer from muscle fatigue/weakness, im only 27 years old, he forgot to mention that one.
Anyone experience, muscle cramping and tenderness!
What about, shooting nerve pain, in the back, waist, groin, down back of leg?
Thank you so much! This explains a lot of my problems! I've been diagnosed with mixed connective tissue disease but I realize now it may also be chronic fatigue syndrome.
I have never heard of this condition but One evening I decided to type in all my symptoms of how ill I’ve been feeling for the last six months and this showed up! Everything that was on that list I’ve dealt with and more and I pray I can find a solution and get a new doctor.. thanks for this video!!!
Hope the reocovery stories inspire you.
Have you heard of LDN?
Thank you for your site. I have several of these conditions. It all makes more sense now. Thank you.
I was diagnosed by Dr. Bell in Lyndonville NY when I was 5yrs old. I believe he was the first specialist to reasearch and put a name to this syndrome! This video was very helpful. It mentions that IC and a couple other diagnosis that I have go hand and hand. I didn't realize that! Thanks you for the information!
I live in Saratoga County, New York and I am looking for doctors who can diagnose and treat chronic fatigue syndrome. My symptoms have been long-lasting and debilitating. I would really appreciate it if you could recommend some doctors in the area, including a primary care doctor. Thank you.
Oh wow, you were in Lyndonvile for the 1985 epidemic?
Dr Bell diagnosed me in 1999 when I was 38 yo.
Miss him greatly !
Wish he was still practicing!
Big hug to you! Did you get much better ?
Helpful. Seeing doc tomorrow and will take list of symptoms due to brain fog.thank you
I think I may have had this for most of my life without realising it, my daughter has fibromyalgia anyway and lately in the last year my son is showing some of these symptoms too. But of course I will get us both checked out with the doctor first . but thanks for sharing this information. 👍
as I was watching this video, I realize this was what I was looking for. It’s been like this for me for over 20 years and now they’ve had it on rheumatoid arthritis problems with my balance swelling in my legs, not being able to stand for any amount of time without getting extremely dizzy worse IBS continual incontinence it seems like the list goes on and on finally somebody tells me that this list is connected with chronic fatigue which I’ve had for over 30 years I’m tired I’m 70 years old and I’m tired than I would ever in my whole life. Thank you for telling me so many things and know that I will be talking to my rheumatologist about the symptoms. Thank you.
I have suffered this over 20 years but I am now healed. I am praying every who is suffering presently. God is able trust Him...
Wow! Please share how you overcame this!
No you weren’t. Or you’d be sharing EVERYTHING you feel you did that helped cure you.
Wow very helpful !!!
Thanks. Most helpful
thanku for this video. thank u for showing how real and important a condition like cfs or me is ❤❤❤
Thank you!!
15 years ago I was injured at work and never got better. Lost Everything! Thanks to my brother telling everyone I was Faking and a Drug Addict. I wish!
Sad, shame how people can be so willing to believe the worst, and how hard it is to convince them otjerwise after the fact
Having CFS/Fibromyalgia is a living hell some days I can't even get out of bed 😴
Excellent!
Excellent video!!! Subbed.
I've had ME/CFS for about 20 years, and have many of these symptoms. Finally, a channel which really pinpoints the symptoms, because many people who think they have CFS do not!! After so many years, I KNOW that I have this, even though doctors will not acknowledge when I present symptoms. Lately, as I age, (I'm 65), IBS, vision problems, PVCs, electromagnetic hypersensitivity, sensitivity to almost all foods, chemicals, LED lighting, and orthostatic intolerance has made my life almost intolerable. Sorry about the negativity, I'm NOT depressed - just have no choice other than going along with whatever comes in any given day. Some days are obviously better than others.
I totally understand Elaine - let's face it, it's a rough trot sometimes. Hope you find some way today to make life just a little bit better. 😃
@@CFSUnravelled1 Thank You, Dan. You seem so well and fit!! I'm happy about that.
Thank you for making this video. As someone suffering cancer related chronic fatigue, as the treatments of chemo and radiotherapy were what started this condition off in me more than 4 years ago now. I pretty much tick most of the symptoms you mention in this video. Its good to know it is linked to this condition as I often wonder if the irritable bowel is to do with the chemo treatment, though it is a long time ago now. Thanks. Good luck everyone struggling with this condition and of course dealing with a world that either doesn't want to believe it, or if they believe it, don't want to hear about it. Stay strong in the face of it all. x
Have your thyroid checked. MAKE THEM do a Thyroid panel not just the TSH. My T3 was very low. Started on. N.P thyroid 2 grains that made All the difference. Had my cortisol levels checked also.good luck to you
A mirror image of my life for the last 3.5 years; even down to the I.B.S. You have confirmed everything about my health problems and their causes that the Haematology doctors and my GP do not want to accept. Thanks for sharing, and best wishes for an improvement in your health. - (I am now down for my first M.E. appointment, but still have to wait another 20 weeks!).
I've been trying to find a diognosis for almost 20 years. It just gets labelled as depression and anxiety which I also battle with.
So sorry. They Won't say fibromyalgia or cfs in my case because lots of insurance companies will not cover the treatments for any of it. I've been on this jo8for 10 years and various health challenges are what started it all from a severe back injury
And you know people don't want to believe you have back problems EVER
Hi there no way this is cause my depression. You live a normal life full of energy. Then one day. You exhausted no energy to do. Things makes you ill. And depression always gets better with time.
On the same boat let me know if you ever find a doctor that really cares. I’ve been battling fatigue since childhood 😳😳😳
Something with me. I'm not depressed but exhausted all the time!
@@KarlaZel Deep meditation and frequent chanting of 'Aum' ॐ
Thank you..I am at the end of my rope..and as the list was scrollin away..I was absolutely stunned...this is real...what I am going through is real..I just posted a video on my channel talking about this..and now I have a medical term for it...
So sad that we are made to feel like it's all in our head when it's clearly a real physical illness. Speak to your doctor about ruling out any other illness before getting a diagnosis.
@@CFSUnravelled1 I am trying to recover from RA.but the emotional drop was my biggest red flag...Thank you for your reply..I shall speak to my doctor..
Thank you 💜
I think I have all the symptoms but no doctor I've consulted here in the Philippines even consider CFS. I've undergone so many tests and procedures including for lupus, colon cancer, hypothyroidism, diabetes, HIV, etc but all are negative. Recently, I had to quit my job. I just can't go to work because of severe malaise and brain fog. It's like having flu without the fever. I'm tired of seeking medical help and explaining myself without getting definite answers and appropriate medication. I was even given antidepressants but these didn't help at all.
How are you now wish you are better
Same exact story here. The antidepressants didn’t work because that is not what you have have. Try telling them tbe symptoms are a lot like long term Covid see what they say.
Nice, thanks
Thank you for this video. I have had this diagnoses over 30yrs and gastro intestinal disorders after gallbladder removal 2 yrs ago. It's been a rough ride, bit I raised 3 wonderful children and worked and continue to work fulltime. I try to ignore some of the symptoms and carry on, but my current doctor looks at me like I'm crazy or faking. He does little to nothing for me but reorder medications I've been on from my previous doctor who moved 2 years ago. I know I need to see someone else.
I've never been diagnosed with CFS but many of the symptoms there look familiar to me. Looks like CFS is a condition doctors are reluctant to give as a diagnosis because it's largely untreatable by conventional medicine. I just want to know why I'm always feeling like crap, every minute of every day.
Hopefully the explanation I offer resonates with you - czcams.com/play/PLYGv2houTixmGYA8zCMhT_MSlagF0UsQE.html
I have CFS for many years and struggle for many years. Excellent explanation! Thank you for your support!
You are welcome - hope you are inspired by the recovery interviews on the channel. :)
CFS Unravelled what dr diagnosis arthritis, fibromyalgia and cfs??
@@Ohkeh640 have you heard of the medication LDN?
Have you heard of the medication LDN?
I've had the same primary care provider for the past 20 years. I'm doing my own research now because my symptoms are getting worse. I think I have CFS since I was a young girl. I have always had chronic pain in some parts of my body. When I was in college the only way I could study was if I came home, took a nap and studied as soon as I woke up. Now that I am in my 40s with kids.. I cant keep my house clean, forgetfulness, always tired, irritable.
Consult a functional medicine doctor
Doesn't sound like me/cfs at all. it's an entire plethora of symptoms, pain, and actual exhaustion right through the brain and muscles. Trivial comments like yours are why people don't take this severe illness seriously.
I'm glad I was diagnosed w/EBV, which I think has a lot to do with my 3 diagnosed autoimmune diseases. I felt like I could point to something and not be labeled a malingerer.
Good list thanks for making these videos 🙏
I have been diagnose with CFS 30 yrs ago it has literally stolen my life.I'm mostly housebound.Now being blind from one eye I'm finding it difficult to see from the 'good' eye and am afraid I'll go blind,Had no idea that it can be a symptom of cfs which causes eye pain and getting blurred vision,...tks for the video clip!
Thank you
Thank you! I'm almost at the point of giving up.
I gave up, that was a mistake. Never give up! Listen to the ME/CFS recovery stories - cfsunravelled.com/me-cfs-recovery-stories-patient-me-cfs-stories-with-a-difference/
I have suffered with these illnesses for over 35 years. I was first diagnosed in 1994 with what was then known as Chronic Fatigue Immune Dysfunction Syndrome Syndrome (CFS ((
Now they talked about SEID and of course many people talk about ME (some suggest that's something else - which it isn't). Frustrating right!
I currently am having Severe relapse. I can barely touch my scalp even the slightest touch is like every nerve ending is on fire. Is this normal for Fibromyalgia? Also my ME/CFS is the worst its been in quite a while 😭💔. Its all I can do to get to grocery store about 5 minutes away but I am a Born Again Christian and I know that GOD'S GOT THIS and HE is JEHOVAH RAPHA Our HEALER and the GREAT PHYSICIAN!! GOD BLESS YOU!! Have A BLESSED Week!! THE JOY of the LORD is Our STRENGTH 🙏💜🙏💜
I have been battling CFS since 2009. I am unemployed and on SSI now. My family thinks I am "faking" it and have turned their backs on me. If it wasn't for my daughter supporting me I would be living in my car. It f*cking sucks and I did all the tests and specialist only to be told I was depressed. I also have type 1 diabetes and multiple complications from that and hypothyroidism. Now I stay home alone all day and have quiet hobbies like drawing and watching Utube. It never gets better, you just learn how to deal with it more and incorporate the limitations into your life.
But we are the strong ones because you know other people could not endure our struggle!
Power B*tches!!!!! 🥰👍🏼🙏👊🏻
100% me .I have all these things. My symptoms are all of these ,especially today...shortness of breath. Thank you.I'm 73 .
Yes Judy, shortness of breath & 'air hunger' are normally missed out as possible symptoms of ME / CFS. I have heavy bloating each time after having a meal (even in small portion), which aggravates my shortness of breath. Unrefreshing sleep, PEM, brain fog / short term memory loss, lack of focus / concentration, constant muscle pain, mild joint pain in the lower limb section are predominant in my case. Hope something works out, tired like hell of this disease.
Have you tried LDN, I am looking forward to get it in India. Get well soon, all the very best!
This is totally me! I keep going back with new symptoms and by the time I go to get the test sometimes it’s not as bad. 😜😢 For example I had a muscle test (EMG) but when I went my symptoms were not really present. But before I had really bad pain and muscle fatigue to where I couldn’t walk sometimes. Didn’t knew what I had was M.E. Hopefully now my doctor can verify it.
40 yrs for me..gave give the exact date too!. I am going to show this video to my dr!! I AM NOT MAKING IT UP- has been said so many times that I've stopped going to the doctor now..I gave up!!
I suffered from CFS for a long time too I found a paleo type diet was helpful but after I had post concussion syndrome for a head injury I tried upper cervical care and it worked for both issues! If your C1 neck bone is out of position it can cause a lot of symptoms because it is interfering with the spinal cord.
I have suffered with this for 10 years and every symptom has been recorded and the treatment stays the same with no lasting result... thank you for listing so many as many of us with cfs feel as though noone believes us.
It's crazy isn't it!!? I created this video to help spread awareness - hoped it might go viral, but it is still needing to build traction - let me know what you think : czcams.com/video/esml2z8gKFc/video.html
20 for me and I am sorry to tell you it hasn't gone its got worse.
I have found that medical marijuana with CBD oil has helped with some of the pain.
@@charlottezipkey9217 Cannabis is honestly my only relief. It really adds to the stress knowing I could be arrested for medicating!
I have had ME/CFS for over twenty five years. I never go to see my doctor and haven’t for years. Getting an appointment is well nigh impossible and reporting to them and dealing with their attitude too exhausting. I manage with homeopathy when needed, reflexology, physiotherapy and daily cold water treatment. I am seventy this year and accept that if anything over and above the ME/CFS happens so be it. My ME includes JHS, POTS, labyrinthitis, PEM, IBS, brain fog and hypersensitivity to sound etc. Even I get bored with the symptoms and now treat them as ‘normal’ me and work around them or with them.
The most debilitating and frustrating symptom is probably the POTS as it comes on suddenly with no warning. I can’t stand still for even a second but have to keep moving to stop it happening. This has been the case since I was a child and pre dates my glandular fever and JHS diagnosis, and well before my ME/fibromyalgia diagnosis.
However since starting cold water and other therapy a few years ago my attitude has changed and I am much more willing to embrace symptoms and push my boundaries without fear. This is improving my quality of life even when I get a symptom crash. Understanding and eliminating my fear of symptoms is the best thing I have ever done to aid my quality of life.
Yes, I am so tired all the time and up suffering from IBS symptoms. I just got up from a 4 hour nap and still exhausted with cramping. Today was such a struggle to stay awake. I would have occasional sharp pain in my shoulders and wonder what the hell is happening. Is it going to be a stroke? No. I can't pin point it out. I used to joke to my coworkers saying I have it CFS because I was tired everyday, but now i really dont think this is a joke anymore. Its getting serious.
the fatigue is like a battery- most people start the day fully charged- 100%- some maybe around 90% or even a bit less- but people with CFS start the day with their 'batteries' only at about 1/4 charge, some with only about 1/8 charge- and you wake up still exhausted- needing m ore sleep, but unable to get proper recharging sleep- and by 4-5 hours later- they are totally spent- and in need of a nap in order to recharge a bit more to have the stamina and strength to make it though the rest o f the day- some folks need a couple naps- just to get back up to the lousy 1/4% charge- with just a 1/4 charge, the energy levels quickly diminish and leave the body exhausted and too worn out to continue-- this isn't just a mild exhaustion- this is a deep disabling exhaustion/weakness- Try t imagine going through life with a constant never ending flu that leaves your body wiped out, weak, shaky, and exhausts you to do even the smallest chores- or to walk up a flight of stair leaves you shaky and weak for several minutes- that is what CFS feels like-
Doctors don't believe I can pinpoint the onset of some of my symptoms - the exact moment in my life. Insomnia, loss of libido and when my energy left me like a balloon being pricked by a pin - like a broken winded racehorse, in the middle of a mountain biking event, at full exertion up a steep hill. I barely managed to finish, previously always coming in around the middle of the field, being an older person in open races, and have been short of breath ever since then, excercise exhausting instead of making me fitter. My diagnosis is fibromyalgia, and I definitely got anxiety and depression from it, having led a very active lifestyle, to the highlight of my life being able to lie in bed and watch TV. My husband doesn't really understand, so I end up in tears very often, whereas I was emotionally stable all through my life. Having an invisible condition is not for sissies!
I have heard countless people tell me about such moments. People often don't get invisible illness, it's not really their fault - hard if you haven't experienced it yourself! However, the key thing to realise is that whilst there is no cure, people do make recoveries even after many years of illness. Rarely are these accidental - the key is understanding how they do this. Have you watched many recovery interviews? czcams.com/play/PLYGv2houTixnrfxc1uvVbfbcTWhSNz4vq.html&si=EnSIkaIECMiOmarE
God. It’s so hard everyday! Can’t keep a day job.... and nobody believes in it either.
Bradley French I hear you, it’s very frustrating.
Very real and frustrating
going Keto has almost completely removed my ME/CFS problems in all of 6 weeks. Im 14-15 weeks keto now and loving life. no aches, pains or brain fog/ confusion and constant exhaustion completely gone. No longer hungry, no longer tired waiting for my next treat/ snack / meal have energy all the time and am functional again. i can still sleep 14 hours a day and feeling crap, but it goes so much faster and if i do have to get up"early" i can cope with it so much better now
Glad it helped you - many people find that a restrictive diet like that triggers them into a crash - so people react differently. Once you have been fully well for 6 months, feel free to contact me if you wish to share your recovery story. :)
@@CFSUnravelled1 I would love to do that. I haven't found the diet restrictive in any way it's more than mindset than anything else but coming from a already restricted diet being a celiac it really didn't bother me to leave behind the pasta and the breads and the pastries and pizza
T Cook what do you eat? And how long did you have chronic fatigue?
I wish Keto worked for me. Tried it for 2 months straight. Nope
I’m trying carnivore. So far the relief on some symptoms is encouraging ❤
I wish my dr. understood like you do.
There are many doctors who understand this illness and focus on a multi-lateral approach for recovery including orthomolecular and lifestyle medicine. You may need to look further afield, but focus on what YOU can do to help yourself first and foremost!
Now whenever someone asks me about it, I can point them to this video. 😊
I can identify with many on this list. The emotional "flattening" is interesting to experience. The "flattening" in my case is proportional to how "tired" I am.
Edit: the benefit of this video is I don't have to struggle to remember all the symptoms.
Thanks Dan 😊.
that is the same with me.....
Great video! The problem now is, we know all the symptoms, but where are the treatments, fixes and cures...??? 🙁
There is no single magic fix all cure - however, people make full recoveries from this illness in all manner of ways. Check out the recovery interviews on the channel! czcams.com/play/PLYGv2houTixnrfxc1uvVbfbcTWhSNz4vq.html
I suffered from this for 7 yrs. Just since this year, I feel 90% ok.
Great to hear - keep doing what you're doing and go until you are fully well. Would love to share your story with an interview if you are interested. :)
@@CFSUnravelled1 I can share my story but I'm a too shy of a person for an interview. Also, the stuff I explored & found relief from is not exactly popular. Involves use of illegal substances.
Thanks for the offer though.
Once you are fully well, contact me via the site so we can discuss by email. Interview can be done without video, just using your first name or using a pseudonym.:) Here is the link: cfsunravelled.com/contact/
@@CFSUnravelled1 I am actually getting cured from this after nearly a decade of suffering. I'm lucky enough to be living near stanford unversity where research on CFS is taking place. I personally know some of the top researhers there. Anyway, I'm aiming to get fully well by March 2020 which is my my daughter turns 18. She does not remember seeing me well ever. Would be glad to get interviewed once I'm fully well. I shall contact you. Thanks!
CFS since 1998 - am responding/improving to the Wheldon protocol for a cpn infection as the cause. The first 8 months of treatment were brutal - worsening overall. I suspect most that are infected interpret worsening of symptoms on antibiotics - as not working and quit antibiotics.
I have several auto immune diseases. Ankylosing Spondylitis and Psoriatic Arthritis and my major diseases. Sjogren's syndrome, Raynaud's phenomenon, and of course psoriasis. My rheumatologist has written in my records probable lupus but because there's too many overlapping symptoms they can't say for sure but every time he does the appropriate blood work it always comes back positive. I don't know what kind of blood work they do for a lupus so I don't know if there is a "lupus" test, but he tells me there's 3 blood markers that tests positive.
Thank you for this, I have almost all of these symptoms from both lists as well as paralysis of the limbs and brain that comes on with crashes. So I think severe weakness or paralysis is missing from the list unless it's just me...
It's not just you. While I currently don't suffer from this paralysis, I have certainly experienced it in the past.
Hi my mom is having this heaviness and stiffness in her chest she does not feel any pain she cannot sleep although she wants to bit comes with constipation along with her finger getting thin can anyone please tell me what this is
Not just you.
Not just you!😥 feel like im hanging by a thread! So tired of it!!
My Thanks... Excellent to the point on symptoms and what can happen when these symptoms are misdiagnosed as a more serious illness, mistakenly and treated as such.. Yes, very frightening, this syndrome is not to be taken lightly as you experience them either chronically or fleeting. After 35 yrs. most or all of these symptoms I have had to deal with in one aspect or another. My only advice, Big Pharma is not the route you want to take. Holistic, TCM, any Alternative for long term. Learn your body, observe, research, "Faith"..May you all be blessed on this journey you are about to encounter, yes it is a "bitch". Good Luck.. My thanks again for this video..
Please try accupunture....it's helping me..
I got sick 9 weeks ago and have been suffering from disturbed sleep and some of these symptoms. It looks like right now I have Post Viral Fatigue but I'm terrified that it will lead into CFS. My energy is somewhat improving slowly, i.e. I can exercise, walk, and go for bike rides but if I do too much I will feel more tired the next 1-2 days. For example when I exercise my throat may get slightly sore, and I may get a slight running nose. My sleeping has been terrible, always waking up and trouble falling/staying asleep.
Hello I have ME tis 12-13 years now other symptoms..........(unless I missed them) pressure bottom of skull, seizures, restless leg, my periods stopped completely approx 11 years ago ........hair changes along with nails, shingles, (since shingles I have blister cluster breakouts all over my skin) measles and mumps I had again strange but true. Migraines, headaches, odema air hunger serious shortness of breath, asthma (these are some I can add and have had many times since childhood) ........great vlog many thanks feef (gal from oz)
Thanks for sharing Fiona - that rings so right, I hear people with so many of those symptoms. If we truly list ALL of them, it would be even more confusing don't you think? Like i said, I don't think there will ever be a complete list of ME/CFS symptoms.
For the first time ever I actually feel heard
I have this. It's horrible!! I've lost jobs in the past because I'm too sleepy to keep up with my work. I have many of the symptoms and take far more meds than I care to. The newest thing, rapid hair loss. I'm devastated. I try to never leave the house. Always wear a ballcap now. I never thought I could feel worse about myself than I have in the last 4 months when it really started coming out. Drs don't know what to do anymore. Between scripts (10) and vitamins (5) I take 11 pills each morning and 9 at night. It's just become too much to deal with most days. I have found that 2 5hr energy shots a day keeps me up for a little while at least.
Thanks for understanding I was losing hope
Got a divorce at 60...first time Id ever lived alone ...was proud that i could do my own yardwork, rearrange furniture, take out trash...anything...about 5 years ago, amost overnight, it was like my body folded like a cheap lawn chair...everything hurts, eyes burn, pick up tge weedeater or trash and it feels like it weighs 200 pounds...cant get comfortable in bed...what the helllllllll
Sorry to hear that - sadly many of us have these experiences. Have you heard some of extreme experiences in the Fibro recovery interviews?
I was diagnosed with fibromyalgia 3 years ago after suffering symptoms for 30 years . At my worst I struggled to walk , couldnt think properly basically had every symptom on that list .My doctor basically said there was nothing he could do besides try low dose chemo which didn't sound that appealing. I had been taking prednisolone which helped alot but isn't a long term solution . I was on the brink of "checking out" when i stumbled across this channel and that of dr Ken Berry . Ive been eating mostly a carnivore diet for over two years now and feel better than i did when i was 18 . Im now almost 50 . Carbohydrates fruit and sugar are off limits for me . Each time i try to reintroduce them my symptoms come back . Dont give up .
There is always hope .
I tried Atkins. Fail .
Glad that works for you. It hasn't for me
I’ve read that there is now a distinction between ME and CFS.
I was diagnosed at the Mayo Clinic with CFS and FM. I wasn’t satisfied with those diagnoses, and was certain something else was going on. So I saw a geneticist at Vanderbilt who refuted the FM diagnosis, confirmed the CFS diagnosis, and diagnosed me with Ehlers Danlos Syndrome. My health has rapidly declined over the past 8 years. I’m miserable.
I am sorry to hear that. It's important to make sure that diagnosis are corrected, so getting a second opinion is always important - that of course includes for the diagnosis of Ehlers Danlos Syndrome. As you can see on this channel, I share lots of stories of people that recover from ME/CFS/Fibromyalgia/POTS. I am uncertain if ME/CFS/FMS is comorbid with EDS or a separate diagnosis - hope to share a ME/CFS/FMS recovery story from someone with EDS if that is possible :) In the mean time, remember that there is always something you can do to make yourself feel better, if not physically, then mentally and emotionally - always be kind to yourself. xx
CFS Unravelled - Thank you so much for the reply. I wasn’t expecting that. My health declined rapidly after having an epidural injection in my spine for a herniated disk. This caused my adrenal glands to fail. I was misdiagnosed with Addison’s disease. After two years on daily oral steroids, I was able to very slowly ween off of them. But I’m not sure my adrenals have fully recovered. This episode prompted my journey to find a diagnosis for all my strange symptoms and pain that I had been living with for years. Everything worsened when my adrenals failed.
I did see a second geneticist in my hometown to confirm or deny the EDS dx. At Vanderbilt, I first saw a genetic counselor who interviewed me, then the doctor examined me. The interview was long and comprehensive. I did not see a genetic counselor at the second opinion appointment, but my physical exam was much more comprehensive than the first. The second geneticist confirmed the EDS dx. She even called a medical student into the exam room to show him my “textbook” features, and lesser known features that they often don’t mention. I was diagnosed as having the hypermobile type, but my symptoms overlap the other types, which is common. I was tested for vascular EDS. I do not have the mutation associated with the vascular type, but I do have a different mutation on that same gene. It’s significance is unknown, but thought to be benign. I’m not so sure.
I don’t know if CFS itself is actually a comorbidity of EDS, but I do know that many EDS patients struggle with chronic fatigue and post-exertional malaise and pain. POTS and other forms of autonomic dysfunction are considered comorbidities. Long before my EDS diagnosis, I was diagnosed with orthostatic hypotension and inappropriate sinus tachycardia separately, along with episodes of SVT, but I can’t get my cardiologist to test or diagnose me with POTS specifically. He said a tilt table test is unnecessary.
I live in the U.S., and have obviously travelled to different cities to find a diagnosis for my declining health. I live in a big city with a respected teaching hospital, yet I can not find a local doctor who treats EDS specifically. None of my current doctors know much about it, and don’t care to learn. So if I have any comorbid conditions, such as a mast cell disorder, they don’t know enough to look for them. They all still consider EDS to be a rare condition, when in actuality, it is merely not often recognized and therefore, under-diagnosed.
Before I became ill, I was a successful software developer and super mom. Two years after my diagnosis of EDS, my husband left and I lost my health insurance. He did not want to be stuck with someone who is ill. (Fortunately, by this time, my son was away at college. He does NOT have EDS.) Now I also suffer with major depressive disorder and anxiety.
I have a very long list of symptoms, but the two that are the most debilitating are the pain and fatigue. I am under the care of a pain management clinic, but they put me in the same “box” as everyone else, even though I am unlike their other patients and have needs that should be addressed differently.
I feel like if I could just get the fatigue and extreme post-exertional fatigue and malaise under control, my quality of life would improve drastically.
My hope and efforts wax and wane, but I have not given up completely. I’m too young to accept this as how I will live for the rest of my life. If I find a solution and am able to recover, I will certainly share my story with you.
You need to apply for SSDI - and don't be dismayed if your claim is rejected. Well over 75% are - what you have to do is appeal. Get an attorney who's experienced in disability insurance; she/he works for a percentage which is set by law (It isn't a lot) which also means that if you are denied you don't pay anything. But when you get your SSDI, you'll automatically get medicare, so you will have medical coverage, which is vital for everyone but especially for people with current medical conditions. I wish you well.
Why indeed!
I had 3 surgeries in the last 11 weeks. It's been 3 weeks today since my last one. June 4th I had to have hammer toe corrective surgery because I had an injury on the end of my second toe that had not healed and almost a year. They did all four toes and he removed all the joints and put in pins for about 3 weeks a lot of the pins came out a day or two before and one of the pins came out real early because the toe got infected. That was the total that had the original wound on the end. Anyway after that I was pretty much starting to recover and I was out in the yard doing some work and I had a hatchet and I was cutting real hard on some roots in the ground and my right kidney started hurting really badly. I've had a lot of issues with my right kidney and I have a lot of infections in that kidney and I have stones. I knew I had a 15 mm Stone in that kidney and I was allergic to allopurinol last fall when they put me on it and in May I started taking uloric to dissolve the stone. When the pain did not lessen and started to get worse I went ahead and went to the ER. They put in an IV and gave me some pain and nausea meds and sent me down for a CT. The stone had left the kidney and entered the ureteropelvic junction. It was completely blocking the ureter and had grown to 2.3 cm. They sent me to a urologist and the next week I had a radiologist put in a tube from by back with a leg bag and a stent. they told me they usually do the surgery the next day to remove the stone but the urologist was too booked up and they only had one urologist in that practice because one had retired and one had moved away. I had to wait 13 days to have the stone removed but the hydronephritis was at least resolved. So on August 12th they went in to remove the stone. When they got in there the sum was not 2.3 CM but was a little over 3 cm! He told me that uric acid Stones were sort of like dandelion blooms and they were very soft and sometimes hard to break up because they would crumble. When he reached in to try to break the stone it exploded into powder. I was in surgery for 4 hours and because of my in stage ankylosing spondylitis putting me on my stomach was an ordeal because of my neck being fused and so kyphotic. They've arranged me after I was asleep and I don't know what they did but my right hip and groin hurts so bad for a week. My SI joints are fused and I don't think they realize that or they dropped me. Anyway I left the hospital two days later and they didn't tell me that you're in could leak out the back. I woke up and my whole mattress was soaked in urine. My mattress is ruined. I found out later there's a stick on pouch that they could put on there to ensure that doesn't happen. Anyway that's not why I'm asking the question. The last couple weeks I just want to sleep. And when I do get up and do something 10 minutes and I just want to sit down. I have no energy reserve I feel like my body is made of stone and I'm walking through molasses. I have never felt like this. I was putting groceries from the car into the car and I got halfway done I just stopped and leaned my head on the car and thought I can't do this I can't finish. I am 56 years old and I had a vertical sleeve gastrectomy at 50 I lost a hundred pounds and to lose a hundred pounds after menopause takes a lot of work and I'm not used to feeling this way I'm used to be able to get up and go. I'm hungry all the time. I didn't used to be this hungry. I could eat enough to get my 60 grams of protein and that's all I needed. I didn't need snacks or sweets and now all I want to do is snack and sleep. I can literally sleep 20 hours a day if I allowed it. I also take adderal for ADD and chronic fatigue and I sleep right through it. They recently changed my dose and I thought this will get me through this this will jolt me out of it, but it seemed to make it worse. The way I was taking it didn't fit my lifestyle. They prescribed it as if I was a student. 15mg at 8am and 15 at 12pm. Many days I don't wake until 11am, so I was taking all 30 together. They psychiatrist changed it to 20mg x 3 nothing after 6pm. Could this be triggered from the surgeries? If so, will it go away and can I speed it up some how? I started taking and activated B complex a slow-release B12 and berberine. It may seem kind of weird but there is a method to my madness. I'm always low on B12 and I've been real stumbling and almost falling a bunch and different symptoms of B12 deficiency and I know it has a lot to do with your energy also
I was misdiagnosed with lupus (they might decide at some point, it is in fact, lupus after all *eye roll*! I also threw an unprovoked blood clot in my femoral artery and hemorrhaged, all the symptoms I have are also found in lupus. Turns out, I have CFS! Imagine the dire consequences if I was put on meds?!!!
Sir
I have all these ..suffering fibro since so many years. The fatigue i started getting since last 1 year. Luckily no irritable bowels syndrome, pains many types, sprains, stiffness, numbness.. going on. Fatigue is horrible. No one feel or believe as i look healthy to my elders. Its most painful , no one feels or believe when i am suffering so much..i am unable to take any medicine ..all give me very dangerous reactions. So please keep going with this disease which help ppl control or cure this condition sir.
Me too
I live in Houston,Texas area. Would you please recommend a doctor care for this disease.
I hate my chronic fatigue. It's definitely not normal I have no excuse for it. I'm not lazy by nature and I feel guilty as hell because of it. Its not normal to be so damn tired. Now if I were working becides keeping my housework then it would be different I would then have a good excuse for the exaustion but I don't. I'm miserable because of the exaustion
Yep, in a world where we are shown and compared to productive people who achieve so many things, of course it's going to be depressing being forced to watch it go by from a bed. Your story sounds just like mine
i put mine down to having sleep apnea undiagnosed for 25 years, then ended up on life support because of hidden pneumonia, after years of feeling like a wet mop, i am slowly realising the things' i did before i can not do at this period in time, but i am still here and perhaps not as bad as some poor soul's, going to look at meditation and see if that helps, maybe the head flashe's will go, god bless out there, from the uk.
I have been suffering with this, fibro, and I believe possibly EDS as I’ve started dislocating, since my late teens. I’m 55 now. I really wish I could find some help. But I’m tired of the run around. Every time I leave a doctors office I feel worse about my situation. It’s really not worth it.
Discovered lump appx 2 cm in my breast a cpl months ago.. i haven't gotten it checked as i have been dealing with fibro cfs spinal injury etc .. im fone with medical fighting pain etc daily.... Im ready to go!!!
Hah, I have nearly all those symptoms and also more. Nice to know that one day there might be diagnosis for this also....if I ever find a doctor who listens me 😕
the hummingbird insitute has a very comprehensive list for M.E/C.F.S
Thanks for sharing. Do they have other helpful resources? What about to help you recover?
One of the most profound and distressing symptoms = extremely severe sensory sensitivity and overloading...feels like being tortured by my own senses - the quietest sounds is unbearable, the curtains closed, sunglasses on and eyes closed and still too bright, severe orthostatic intolerance so cannot even use a pillow, heart palpitations even when I think or move my little finger, intolerant to most foods, difficulty speaking, breathing, choking on my own saliva.
I have just come off a bad bout of Shingles. I am going to try some remedial massage and acupunture
Cfs and fibro together is diagnosed as central sensitization. Cs is what I have
Having a recurrence due to stress have alot the above symptoms plus shingles.
when more symptoms are in the “you’ve had chronically” category than the “you haven’t had” category since you were 7-8y/o:👁👄👁
when you’ve been wondering “wtf is wrong with my body” since you first were a sick kid for a couple of years and celebrate every answer including learning the names to your symptoms: 🤩🎉❤️🧡💛💚💙💜