Caz: How fatigue impacts my life with Ehlers-danlos syndrome
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- Опубликовано: 25 май 2021
- Daily tasks we take for granted, even simple functions such as swallowing can become difficult for some living with Ehlers-Danlos syndrome. Chronic fatigue can impact all aspects of life.
Caz shares her experiences living with EDS.
I love that explanation that our muscles are doing the job of our tendons and ligaments. As an older person being told to sit up straight all the time at home or school was pure hell.
I agree
That stood out to me too.
I have had two different physical therapists tell me that my muscles are overworked. I always thought that was weird because I didn't think I did enough for my muscles to be overworked
This made me cry. The fatigue is very difficult
Hi.Having Elhers-Danlos and fibromyalgia, I completely understand your exhaustion.I totally get the part about not being able to eat your food. It is energy-consuming being this way.Today I have been for a CT scan.Had to have bloods first and then wait for it to be processed (over an hour) and then endure the scan All this on 3 hours sleep. Good luck to you and anyone else suffering 🙏
Maybe you don't have fibromyalgia. EDS can be misdiagnosed as that. I am wondering the same thing about myself
I was just diagnosed my mind is going crazy
@@brendalg4I was diagnosed in mid January with hEDS AND fibromyalgia. I swore the fibromyalgia had been misdiagnosed in 2020 but the Rheumatologist reassured me that I do in fact have both. I fully understand your hesitation, having felt that way myself. Good luck in your diagnosis journey and take care of yourself x
Suffering from EDS and social anxiety due to the fact I’m probably going to disc locate something when I’m out and the next week I’ll will pay for my outing . I’m weak and In pain 24/7 . Pls don’t judge how many times we cancel on you we still appreciate being invited!!
Nope, no judgement here! I am a fellow zebra 🦓. I really understand how you feel!
@@shannongreenwell1278 me too.
Hello, Caz! I have Ehlers-Danlos Syndrome keeps me extremely sleepy, too. It suck’s especially when I have to work at night! Ugh!!!
I also have eds and suffer from extreme fatigue
Me too.
Thank you for making this video to educate others.
i wish i could have articulated my pain better as a kid, even now it's still really hard. doctors i talked to thought that kids didn't have the sort of pain i was describing so they just said i wanted attention. it's hard enough dealing with chronic pain without being insulted and ignored by the people who are meant to be helping you.
edit: oop somehow i left this on the wrong video, it was still about eds but idk how i ended up doing that
But this is so true! Doctors thought I was drug seeking because they couldn't find a cause for my wild ranging body-wide pain. So they tried to have me committed for drug addiction, only my blood work didn't show any drugs other than what I was already on. But here I am again, crazy, up at night with burning nerve pain. Sigh. Annnnnd even the drugs I'm on FOR this dang pain, doesn't work. Sigh. Yay go me.
@@deathbysnusnu1970 I'm so sorry that you have nerve pain in addition to EDS. I'm finding that the new doctors do understand EDS. A new gastroenterologist showed great empathy whereas the older Md. was clueless.
@@jeanettestiles2883 it is hard to know who to go to because older doctors might know more because of their experience but younger doctors have more up-to-date training
I agree and thank you for spreading awareness. Today I am completely exhausted. Emotionally and mentally. I can't get up to just take my medicine without stabbing pains all up my body, and my joints giving out. I am trying to build strength in my body with zebra club, but the muscles are so tired , my joints are so tired. It's hard to keep on through the pain in the hopes it'll be better one day
I hope you are feeling well today.
What is zebra club?
Thank you for sharing.
I think all the comments about weight loss are really counter productive. I lost 8 stone over the last 4 years and can say it actually made very little difference to my fatigue or pain levels. To lose that weight was made harder by the fact that I couldnt do any exercise. I suffer with hEDS, fibromyalgia and an unknown (or so it seems) form of autonomic dysfunction. After all my tests and the TTT, my cardiologist said it wasn't POTS as my blood pressure hit the floor and my heart rate didnt exceed 30bpm within 10 mins, however it did by 12 mins and just kept rising every minute that I stood up. The test ended at 19 mins with my (almost) loss of consciousness. So I was told that its a "spectum of disregulation of my autonomic nervous system" and that she'd like me to go back to discuss how I manage my symptoms! Anyway I got off topic there... Weight loss may help some but is definitely not always the answer.
I know the feeling darling l am in the same boat as you believe me its suffering just suffering Praying for you and everyone of us who suffers ‘ 🙏🌸🙏
#Zebrastrong
Yes you are and all the rest of us who have EDS!
I have fibromyalgia and hEDS and i totally getvit. Im down to 125 lbs. I just hate eating. Im so exhausted and keeping up with my 3, homeschooled kids is so hard
Caz , l dont mean to be unkind her but being overweight ( or even extremely underweight , l've had anorexia in the past ) greatly impacts energy levels . Lay ontop of that EDS and the body cannot cope . Putting a lot ( and l mean a LOT) of energy and time into managing lifestyle factors has given me the quality of life l have, as well as beung persistent with healthcare needs but l wouldnt be able to chade those ( and go to work ) if l didnt maintakn a healthy lifestyle which focuses around diet and exercise . Every day l'm punching hard to get the best out if life. ..it is very tiring but if l give up I'll get worse !
Can needs to.lose weight to improve her symptoms helped me SIGNIFICANTLY with energy
Same.
I wish they would legalize cannabis in your area. Best of luck fellow zebra 🦓
@@zeynand4039 that is a very interesting question and an amazing one. No, we do not do well with being put under. Our brain is built with a cannabis system. That’s why some people need more to achieve that much needed relief from pain. There is a group on Facebook called Stoney Zebras. They swear by cannabis.
Cannibus is no good for me
Losing some weight would be a good starter (less to carry around) and mindfulness meditation (create positivity in your brain) being in a negative spiral just makes everything worse.
I can hardly walk!!😢😭
I have so many questions!why do we have it? what's happening?why? I'm 56 and was diagnosed 3 yrs ago and I don't know anything about it or anyone with it?any help is appreciated!
Who did you go to, i.e. what kind of doctor to get diagnosed. I suspect I may have it as well.
My primary care provider asked me about symptoms and checked my joints. I don't know if he was convinced I had it. He said that there is a genetic test all the types except the most common. Hypermobility which of course is the one I might have
My physical therapist also tested my joints and said I had many hypermobile joints
It's controlled by st least 12 genes that we know of at the moment . These genes encode ( give the body instructions ) to make protein or more correctly a type of protein present in tissues like skin , bone , nerves ,cartilage, muscles and tendons . This protein is abnormal ( due to the collection of abnormal genes that encode for it ). This abnormal protein makes for over - stretchy ligaments so muscles have to work harder to keep joints together . The over - stretchy ligaments cause pain receptors to fire that are present in them , alerting us to the possibility of joint dislocation . In a " normal " person this is an early warning system ; in EDS it's part of daily living . Hypermobility causes discs to wear prematurely. Neck or cervical hypermobility causes migraines / headaches . Abnormal nerve proteins cause stomach and gut problems ( gastric dysmotility) and possible heart conductance problems and vascular problems in some ( much rarer ).The areas of the brain that deal with anxiety and fear ( hypocampus etc ) are larger in EDS patients and so these are processed in a more exaggerated way . Osteoporosis is something females are more prone to in EDS ; get your bone dead scan and get home density checked ( going on HRT doesn't have the risks we've been told , go on it if you need to.) Foot problems can be ameliorated by foot orthotics available from NHS Podiatry services and are a great help . Try I tend to be more fragile ; tell dentist of diagnosis they will need to use an alternative anaesthetic formulation in injections due to possible heart and tissue issues.
Fatigue is a real issue as your muscles and brain are working over time, processing excessive input that others without this condition do not have .
A very nutritionally dense diet ( l recommend fish as I'm pescatorian and provides all the essential amino acids to make protein ; high fruit and veg ; no wheat or alcohol as they are pro - inflammatory and inflammation or MCAS can be a problem with EDS . Taking a high quality high dose fish oil capsule daily ( not cod liver oil ) and vitamin D ( in oil capsule as aids absorption) plus high calcium diet consisting of Keffir or Greek yogurt , low fat cheese is essential . Forget cakes , sweets , biscuits or only as rare treat as they disrupt the gut biome ( body's gut balance ) and can drive inflammation , as well as diabetics.
Exercise is essential . Get fit. Swimming is the best as water supports you and you can build muscle around joints to stabilise . On top if that you can then add others such as dancing , Pilates, walking and other non - contact moderate exercise .
My lab partner at uni who went on to do Medicine ( all his immediate family and extended were doctors ) told me he thought l had EDS . I'd never heard of it and dismissed it . 30 years on l was finally diagnosed ! You can do catch - up and live your best life . Go live it ! Hope this helps. ( I'm a Biology teacher in a state school , a hard gig for an EDS sufferer; the Medical Physiology l studied at uni has been a great help in helping myself and getting diagnosed and further treatment .)
@@ivybichon8582Rheumatologist with specialist in EDS is needed . Don't get robbed off by being told to see the Rheumatologist at your nearest General District Hospital ; you need a specialist . Patient choice in NHS allows you to request outside of your NHS trust . I saw Dr Kazkaz in a London hospital . Most GPs will never see an EDS patient in their whole career . Don't let them try and treat you if you suspect you've got EDS ; it's a disaster .
Maryhoyston please read what I've said but l was thinking you wete in the UK and had access to the NHS but most is applicable in US , anyway . Sorry about typos but dyspraxia ( co- ordination type of problem is also part of EDS and affects my keyboard use ! ) 😂