That an EDS thing. Our body’s do waaay more work to “exist”/function than normal peoples.
I ended up being diagnosed with narcolepsy also. So I am always fatigued and always sleepy, those things are different but not mutually exclusive
I’m narcoleptic with cataplexy.
I’d venture to say MOST people with EDS have CFS/ME as well. Very very very common. But if you’re actually uncontrollably falling asleep or having constant episodes of partial paralysis when you have to force yourself awake, a sleep study with MSLT is in order.
Cleotilde I have so many things that cause the same symptoms, I rarely know what’s going on during any one particular episode anymore tbh.
Cleotilde personally, my fatigue was never ever as bad as it can be now before getting ill, I guess that's how it differs. I also get nerve pains and muscle weakness along with the 'ME fatigue' but not necessarily with the general daily EDS fatigue
lorenzo Yeah I understand. I too find it confusing.
Not to pop in randomly but is sleep paralysis linked with narcolepsy?
Tangela It can be. If I remember correctly. sleep paralysis can come on in people who dont have narcolepsy when they are overtired. But its also a red flag for narcolepsy. Especially if you also have daytime sleepiness and hypnogogic hallucinations. (REALLY bad dreams. Dreams feel like they are real. Very physical. Hard to explain but if you get them you'll know what I'm talking about.)
I've always wondered about narcolepsy. There's not much info out there except about the kinda stereotypical suddenly falling asleep randomly
Narcolepsy isnt always about suddenly falling asleep, Its about constant/chronic day time sleepiness. Also most with N struggle with waking up and falling asleep as it is a disfunction of your circadian rhythm, even going so far as negatively impacting your metabolism
If you want a diagnosis, an overnight sleep study to rule out forms of apnea is needed. The following study is a MSLT, this test determines if someone has IH, N w/ C or N w/o C.
If you have Cataplexy also, its a good bit easier to diagnose Narcolepsy. But you will likely need to rule out and possibly treat any form of apnea if present.
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Of all my Ehlers Danlos symptoms and comorbidities, Narcolepsy is by far the most destructive to my quality of life
Sherman Good point about the circadian rhythm thing. I've had doctors tell me I can't have both narcolepsy and insomnia. I need to meds to both wake up AND fall asleep.
Im sorry theyve said that to you. For me its harder to wake than fall asleep, but both are crazy difficult. And unfortunately for me Ive been off meds for just over 4 years now, just usually over the counter stuff. due to a lack of insurance/decent job, due to my N symptoms
Sherman There was a period of time when I didnt have insurance that I got a medication through one of those patient assistance programs. Im blanking on the name of the medication but I can look it up if youd like? Maybe you can see if they still have a program? The med was as helpful for me as what I normally take but I know we all respond differently to the different ones. I can't imagine going back to life w/out stimulants. Anyway, it's in my files somewhere if you want me to find it.
No rush, but if you do find it that would be amazing, Ive not had the energy or motivation to try and find other meds. Im just focusing on existing lately, Thanks so much
Cleotilde I’m on meds to stay awake and fall asleep too; who the hell told you that? I’m up to 600mg trazodone and still don’t sleep at all most nights. I normally sleep from 10ish AM til 8-9PM, then I’m up with cata attacks until 9-10 the next morning. If I have to go somewhere during the day it’s hell and a half and I’m dysfunctional for days after.
I feel so much for you because this is my typical days as well. The worst for me is when ive push myself for something and had to wake early or delay sleep, Ive been in and out of sleep for up to a day in a haze and am lucky my beds near a bathroom
Coming out of a day like that right now actually
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Sherman Ok so the medication is called Vyvanse and I looked online and looks like the company that makes it is Shire. Im gonna also attach something I found online that looks like its a link to the patient asst. program but I don't know if it's current. You could also check the Shire website. I take dextroamphetamine and found Vyvanse to be just as helpful. (If you used to take Adderall, I didnt like it as much so not sure how it compares to that one but to me, any stimulant has got to be better than nothing.) The dosing is different and took me awhile to figure it out but just for an example. I take 15-20 mgs. of dextroamphetamine and the equivalent dose of Vyvanse that helped me was 50 mgs. I think the Vyvanse comes in 30/50/70 mg tablets. Not positive but I think Adderal is dosed similarly to dextroamphetamine so thats why Im putting up the 'example dosage' stuff. Hope this all makes sense. And of course I have no idea if Vyvanse might be contraindicated for you for any reason, but in case this might work for you. Really hope it can. http://www.pscard.com/index.cfm/patient-assistance-program/tegretol-to-zyvox/vyvanse-patient-assista...
Thanks so much, I am hopeful for some improvement
Sherman I hope so too, good luck to you.
Cleotilde I can’t take MMJ anyway; it’s all good. And Xanax doesn’t do anything for me so I take Ativan instead.
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I'd love to get a sleep study but the NHS would probably laugh at me if I tried to ask , they probably only give them for sleep apnea and I have no idea how to know if I might have that
I read a bit about cataplexy, and it's one of those things that could also be caused by ME so who knows, the neck weakness thing is particularly interesting though because that's been a bigger problem for me recently but I'm not sure it ties to emotions at all
verna thank Cataplexy is transient paralysis triggered by moderate to strong emotions, laughing, crying, and startling. Narcolepsy comes as with or without cataplexy. I have NWC, but Nw/oC is equally common, and equally valid. Literally the only difference between the two is the cata attacks.
I’m glad you could relate! Well no, I’m not glad you relate to that, but I’m glad something I wrote can resonate with you.
Is a sleep study w/MSLT available to you? N can’t be diagnosed without one, WITH the MSLT. That’s a mistake too many people make.
verna Well narcolepsy can only be diagnosed with a sleep study and MSLT combo, so if they diagnose it at all in the UK, they must offer it for them. There’s plenty of sleep disorders only detectable with them!
Do you have a neurologist already? They’d be the person to ask, or if not a PCP.
Oh I'm sure they offer it on the NHS, but for a 16 year old female who's already been pushing to see a specialist my GP would likely tell me to f off
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Cleotilde thank you, it has been super useful and just interesting to learn more about it. I guess I'll never know until I find a good doctor!
verna Good luck. And yes, keep looking until you find that good doctor! They are rare gems but theyre out there.
It's caused by many illnesses. I don't know much about it being an EDS thing because I'm new and haven't seen much literature on it.
Constant fatigue is a big thing, I get up feeling exhausted, suffer horrendous brain fog I laugh it off and say I’ve been asleep it’s like wiping the memory from a computer, equally it’s bloody frustrating when people say they’ve told you and you can’t recall it at all! In work they call me Dory
Im constantly tried I litterally have maybe 4 hours of the day I am not exhausted. I am constantly thinking about sleeping and used to uncontrollably fall asleep while driving a lot but it has gotten a lot better. I still am constantly tired though.
I’m sorry, but if you are falling asleep when driving you need to stop driving and notify the DVLA.
I have my husband do things when im really tired so it helos whats DVLA?
It doesnt happen as often as it used to. Mostly on the high way which we take special measures to keep me from falling asleep
Now I agree I shouldn't drive when im tired because its very hard for me to not fall asleep. I drive a lot less now.
It used to be very bad and was affecting my life a lot but has gotten a whole lot better.
DVLA is the driving license issuing authority for the UK. I guess you’re not in the UK?
No im in US
I guess it doesnt happen as often as it used to which is good. I still always very tired and I don't know why.
Luba I wake up tired, j believe it is part of EDS. I stay tired until about 4pm and then I get an energy boost. I literally can do anything then and within a few hours I crash with tiredness.
I have narcolepsy also
I find it's worse when on pain meds too. Doc says can cause tiredness as a side effect. I'm like. dude you have no idea! Any more drowsiness and I can't function. So no pain meds
Pain meds keep me up. I guess it’s because I feel better, less pain and I can actually function. I don’t get them often though, my doctor says im too young to take pain meds regularly. Im 35 and chronically exhausted and in pain.
I was diagnosed witg ME long before anyone ever mentioned hypermobility. I remember being seen by a dr when I was young about my legs being at an odd angle, but they never noticed it and nothing ever came of it. Ive never had much luck with drs, they dont seam to care much when I go to them with symptoms.
Yeah me too. I was 19 when Dxed with CFS. 44 with EDS, POTS etc.Even today it's my worst symptom. Pains up there too but, always dragging myself around.
I actually thought POTS cancelled the CSF out but I don't know for sure. Lots of people have postural hypotension or Orthostatic Intolerance with CFS and ME. Which is the same as POTS.
Im diagnosed with hypermobility syndrome, which I dont think is right, I meet the new chriteria for eds. I also get a bit potsy sometimes, standing up my heart races and I go dizzy, blood pressure shoots up. Im also hypersencitive to sound, light, taste, smells and light touch, but also suffer with numbness, which is an odd experience. The end of a hair touching me can feel really sharp or makes me itchy but I often dont feel it when I cut myself. I get a lot of tingling all over too, and my lower legs and feet often go to sleep just sitting on the toilet, or upright in a chair, I gotta have my feet raised if im sitting otherwise I get too much pain in my lower back.
I found out the other day that my ME and hypermobility diagnosis arnt even in my drs notes! Its no wonder I have so much trouble getting anywhere with it, drs looking at my notes only see fibro and thats it. Considering I got the hypermobility and the fibro dx in the same appointment, whoever it was obviously decided the hypermobility wasnt imprtant, even though the fibro is secondary to it.
Myrtis Have you been checked out for POTS or any sort of Dysautonomia. It's very common with EDS and Joint Hypermobility syndrome.
You probably want to concentrate on one thing at a time. I just wanted to say if your Dr is going by the new rules he should be calling it Connective Tissue Spectrum Disorder. Some times Dr's make their own rules. Sometimes they have no idea.
I know, like I said, its not even in my notes, ive been wondering why drs are always confused about a problem im having, as they dont even know im hypermobile.now I know its missing, im going to have to explain it every time, but when I did that last time, she said she can't take my word on it. So frustrating trying be taken seriously. I requested a nerve conduction test a few years ago because of the numbness and other neuro issues, that came back normal and I was once again just left. Nothing was done about the fact I still had symptoms that could be caused by ms or small fibre neuropathy. Im trying to get seen by a neuro specialist but dr insisted I had a blood test, which came back with slightly raised liver results, which is probably caused by me being fat, but I still have to wait another month for a second blood test, which will likely come back the same, cos im still gonna be fat. Its got nothing to do with my neuro issues yet ive still gotta wait. Dr told me to loose weight, which is when I had to explain that I can't exercise much due to pain, and my joints being loose, and its not like I eat cake or crap like that. I said, short of starving myself, theyres not much I can do about it, I was kinda hoping she would say something about getting the pain under control, but nope, gotta wait a month.
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Im in the uk, in the south west, theyre are no specialists that deal with things like eds here. Im alergic to a lot of things too, environmental things, dust etc, pretty much if it gets in my nose im gonna react. I've had every antihystamine available and none of them do anything to help. All I can do is give up and go to bed for the rest of the day. Drs never seam to care, one of them told me to just avoid the trigers, but there was no offer of testing to find out what those triggers are, plus ive got family with cats, at the time my parents, one of the reasons why I left homes was cos I had already had to live with a cat I was alergic to, for 7 years.
I should clarify, I was talking to the dr on the phone, as traveling is tricky, I live alone, have no partner and I had to give up driving, so most of my appointments are done on the phone with my gp.
I dont know if im algeric to the stronger pain meds, noone will give me anything stronger than naproxen and cocodomol, neither of which work, so im not on any meds for it. Sadly its very difficult to get an eds dx on the nhs, when I was diagnosed hypobile, they didnt even do the beignton test, it was all bases on my knee subluxing a few times. Im an 8/9 depending on a couple of things, having never been properly tested I dont know exactly how it works. I can't quite put my hands flat on the floor, but I can put my fingers flat with my palms a bit off the floor. I can also bend my back upwards with my pelvis still on the floor, I think its a yoga move. I need to see a rhumy, and I asked to be refered to one,but dr told me they dont deal with it, only pain management, but then was that because she didnt know im hypermobile and was thinking I meant for fibro? I've had no help at all with anything, and I thought it was just an nhs thing, but im now thinking its partly cos my dx was never put in my notes.
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To be honest the pots is the least of my problems, its not as bad as some, and I can manage it mostly, not having any kids or anyone else I have to be around for, I just do what my body wants and rest a lot of the time. The pain and loose joints are the worst part, along with the fatigue, I dont have the energy to cook and, like I said, theres noone to do it for me. We dont really have a registration or anything here for disabled people, I do have a parking badge and get welfare, I guess that would count. I dont think my gp knows how disabled I am though, its not really something that comes up. On diagnosis all I got was a leaflet that wasnt much help and some amitriptaline that made turned me into a mess.
It seams like there just isnt anything available, I asked for pain patches years ago and was told the side effects wernt worth it, yet apparently the side effects from ami and lyrica were fine, they didnt help and im still in pain, which doesn't seam to matter either. Better to be in no pain and have no life, than get pain meds and risk addiction, apparently.
Article: Chronic Fatigue in Ehlers Danlos Syndrome Hypermobile type by Hakim, De Wandele, Pocinki etc. (2017)https://www.ehlers-danlos.com/pdf/2017-FINAL-AJMG-PDFs/Hakim_et_al-2017-American_Journal_of_Medical_...
Article: Too Tired EDS and Fatigue by Brad Tinkle https://www.ehlers-danlos.com/2014-annual-conference-files/Brad%20Tinkle.pdf
Definitely, I always had fatigue, it has been bad for about 7 years and then about 3 years ago I developed ME after an infection which made it 10x worse (apparently I had glandular fever, despite being unable to remember having it? But our solution at home was always to not go to the doctors unless it was necessary)
Yes the Glandular Fever Preceded, my CSF, then 30 some years later I was Dxed with EDS and POTS.
Well I have a lot going on. mitochondrial disease, gastroparesis, POTS, and on and on, so personally I don’t think there’s a solution for me outside of getting a new body, and as much as I watch science fiction and dream and joke about it, I don’t see it logically becoming a possibility any time in my lifetime! So short of a full body transplant, I have to get lots of rest, respect my limits and try to get as much of my supplements and as many calories as I can into me! I don’t know if anything like CoQ10 or D-ribose would help you. They help me a little as they help with ATP, which is the energy our cells use. If you take any medications make sure that they won’t interact with them before you decide to try anything. These two supplements are generally the safest ones that many people take to help with energy. There’s others but I’m not totally sure about their safety outside of a mito protocol so I have to research them more before I feel comfortable mentioning them. I’ll pull my books out after I get some rest.
Yeah Co Q10 is Magic. It helped to get me through life for a very long time, before I got super I'll. I stopped taking it after I started vomiting all the time. It's very acidic, vomiting it feels like you have just puked up an entire barrel of pure Sulphuric Acid, not kidding, even softened the enamel on my teeth even and they got super stained.
For those with extreme hypermobility our bodies essentially do double work in order to accomplish the same results. This can make you get tired faster and easier. Plus you have medicine side effects and the matter of our bodies constantly trying to repair the damage of daily life. Some of us are worse than others. I had to learn how to listen to what my body was telling me and figure out how much my body could handle. I still push myself too hard a lot, and I always end up paying for it afterwards. The spoon theory describes this perfectly, I'd suggest looking that up if you're not already familiar with it.
Naptime works and I take lots of b12
If I dont, I don't function
I'm in the same boat. Could literally sleep for 16 hrs a night no prob. I find it's worst in the winter. I just want to hibernate like a bear
Fatigue is very common amongst EDSers, the exact reasons as to why are not super well established, and honestly it probably varies between people.
CFS/ME and EDS used to get diagnosed in tandem more frequently, same with EDS and fibromyalgia.
But as more research is being done on ALL these conditions, there is now growing belief that those severe fatigue and widespread like fibro pain are actually just symptoms of EDS directly in some people. Not that someone CAN'T have both conditions, but it might be more likely that EDS is the culprit of those issues in at least some patients.
I deal with bouts of intense fatigue and widespread fibromyalgia-like pain on and off. My geneticist that confirmed my diagnosis, and the physiatrist that manages my PT and also helped confirm my diagnosis as she sees many EDSers both think in MY case its all from the EDS. Working theory being, my body is just constantly working harder than a healthy person's body to just maintain basic homeostasis, whether that be thermoregulation, vitals/circulation, literally staying upright, retaining fluids normally, digesting, etc when everything is just basically just even a little "broken" in how it is processing, this collectively can take a huge toll and manifest in serious fatigue, or erupt in a wider spread inflammatory response. Another working theory is that many EDSers get poor quality of sleep due to pain, or abnormal adrenaline surges can be a thing for us, and can disrupt sleep. Overtime poor/inconsistent sleep can definitely result in more serious fatigue.
Not even to mention the constant energy it takes to just cope mentally/emotionally with being uncomfortable in SOME way on a full time basis. That is a very real, very exhaustive thing, that I feel is often not given enough credence.
I cycle through bouts of severe fatigue, and then also sometimes insomnia. I used to get in trouble when I was still working a regular job because I was constantly getting up from my desk, or going to make tea because I was honestly just trying to stay awake. My supervisor made multiple snide comments about me being so tired, she once said "You'll get no sympathy from me, I have two kids at home"
I literally do not have words to articulate my exact disdain for that woman.
Fatigue is real, and it really sucks, there are a lot of possible reasons for it. Just try to keep communicating with your doctors best you can to sort YOU out. Don't be ashamed to need and take rest. Fatigue is definitely the kind of symptom that when you push it, can push back a whole hell of a lot harder and really knock you on your ass.
Don't discredit behavioral interventions for keeping your nighttime routine/regular sleep in order. I take melatonin nightly, or tea with valerian and chamomile too sometimes. I try to not watch TV from my bed so much. My TV is in my room, but I also have a couch in my room, so I make a purposeful effort to watch TV from my couch and not my bed, bed is for sleeping, it's a whole thing. Not gonna lie, sometimes when I'm feeling bad for extended periods of time I do curl up in bed to watch TV, but I try not to. I TRY to keep a consistent sleep/wake schedule. There are lots of apps for this. I try not to eat in bed, again, bed is for sleeping. It's definitely not a cure, but good sleep hygiene is really really important, and something that has been a constant battle for me since early childhood because I get inconsistently sleepy or energetic. But honestly, when I put in effort to be more consistent, it does HELP, doesn't cure, but does help.
Don't waste energy you don't have to spare, and just take care of yourself best you can.
I've been wondering about this. I also have narcolepsy so I'm always tired, but I have no idea how much energy "normal" adults are actually supposed to have.
I feel like there were many people on this thread that said they have narcolepsy. I know narcolepsy is very different than 'chronic fatigue' (at least it is for me), but I'm just curious if anyone knows if there's a link between narcolepsy and EDS.
HEDS, fibromyalgia, Hashimoto's, sleep apnea, adrenal fatigue, anemia, chronic EBV, suspected chronic lyme, suspected MCAD, more. all can relate.
Want to crash right now but can't. ate lunch. Can't lay on food/drink/med. Have pushed through without naps for 3 months now. Always drained. Only 6-8 broken hours per night no matter how much planning and trying I do.
My 'plan' tonight is skip supper, maybe just broth, so I can get in bed early. Never works. Someone force me to stick to my own plan! Gave in and ate supper last night. Once I take a bite I'm committed even if 1-3 hrs later I need toothpicks for eyelids. can't lay down. When I do eat supper the plan is 3 - 3 1/2 hrs later take omeprazole, then 1 - 1 1/2 hrs later go to bed. Running on fumes for months. Before that, before open gallbladder surgery, was resting in recliner, nearly upright, as much as possible. same food issue though.
I have wondered the same thing. I always assumed it was just being an adult, but I also know I don't sleep well which I know contributes. I do think my energy for being busy is less than others.
Our muscles have to perform the jobs that our tendons and ligaments cannot, holding our bodies together. It is a physically taxing job that occurs during all of our waking hours and we are not even aware that it's going on. This is one of the reasons for fatigue in EDSrs.
I’ve found a natural product that helps my fatigue. It’s not for all as it does have caffeine in it but the rest is all natural herbs and medicinal mushroom