Hello, Mirta, how are you doing? I also have Ehlers Danlos. Your surgeries sound quite traumatic, I hope that you're doing well.
Hi there, EmmelBerry :) Sounds like you've had a lot going on! I hope the appointment with the physician is helpful for you and I'm glad that your neuro appointment went well for you. How are you today?
Now I'll play your ghost as my ace, whenever I'm led astray.
But I am actually good, can't help it if we're tilted.
I'm in my right place, don't be a downer.
I ask not to know my weight more so I don't slip into e.d behaviours now I'm actually fat aha. Sad times.
Does anyone with M.E have a heart beat problem? They noticed mine in august and it's only been higher, now on beta blockers but just curious if anyone else has this? Online tells me some m.e people get it. My doctor can't work out why mine is doing this though.
I didn't have to be weighed at my appointment :) It wasn't necessary to the consultation so they didn't make me do it.
My heart races and palpitates a lot, but I've been told that I have to drink a crap ton more liquids as dehydration can be a cause. If it doesn't improve after a couple of months of improved liquid intake, I have to go to the POTS clinic. Heart irregularities are common with people diagnosed with ME, though, what's your fluid intake like?
Now I'll play your ghost as my ace, whenever I'm led astray.
But I am actually good, can't help it if we're tilted.
I'm in my right place, don't be a downer.
It's... I don't know really, I don't drink enough but I don't think I'm THAT dehydrated. Like a have a glass of something a day at least. I may try and drink more though and see, the beta blockers have it controlled at the moment though.
There will always be a happy ending. If its not happy then its not yet the end.
After having a quick google (I wasn't sure what it was)...
I have like all the symptoms of POTS except my heart is always that fast, not just on standing and my blood pressure is okay... Almost thought I'd found a possible answer then! Hypermobile too which is a cause and it's post virus
Ah well!
There will always be a happy ending. If its not happy then its not yet the end.
It went okay, Caz. Needed 6 out of 9 markers for a Hypermobile Ehlers-Danlos diagnosis and I apparently have 9 of them with gusto, haha. I've been fighting doctors to take my pain serious for a really long time. Some doctors say Fibromyalgia is all in your head - doctors blamed my mental health for everything, but now I have this dx they can't do that. I've had this since the day I was born and they can't brush me off any more.
I dislocated my hip and damaged a tendon on Tuesday last week and holy **** it's been a rough week. I still can't put any pressure on that leg without a hell of a lot of pain, I tried today and felt my hip subluxing and thought I was going to pass out. On the plus side, I'm getting arms like hulk from using my crutches :P
I know I need to be patient whilst it heals, but it's so frustrating.
Changes in progesterone levels around menstruating time can affect cologen function, and therefore joint stability, apparently. TMI, I'm aware, but my period started this morning so maybe that's why I've not felt much improvement yet.
I don't know. I'm tired.
Glad you're okay Mirta :)
I'm glad the beta blockers are helping you, Caz :)
Now I'll play your ghost as my ace, whenever I'm led astray.
But I am actually good, can't help it if we're tilted.
I'm in my right place, don't be a downer.
caz, i'm glad they're treating it, just a bit confused as to why they wouldn't put me on a different form of iron that i could actually absorb. *shrugs*
also like rodolphus said, my dr recommended i drink looooooooooaaaaaaaaads of liquid. like 2 litres before midday loads. i don't get thirsty easily so i'd say i could easily drink under a litre some days. so i found that amount of liquid impossible, like even close to a litre before midday had me going every half hour for the day.
but i gave it a go, apparently it's standard advice for POTs like symptoms especially in people who are underweight. i found it unnecessary to be drinking that much but drinking more did help quite a bit! i'd recommend experimenting with it!
rodolphus, great you weren't weighed. i mean appointments can be anxiety inducing enough. hip and tendon damage must be horrific though :/ i don't have hypermobility really but my issues are related to my flexibility training (like a lot of circusers) so they kind of group me with it. sounds terrible.
Does anyone with M.E have a heart beat problem? They noticed mine in august and it's only been higher, now on beta blockers but just curious if anyone else has this? Online tells me some m.e people get it. My doctor can't work out why mine is doing this though.
Hey,
I suffer with quite severe heart problems due to my M.E[as well as my chronic anemia and other health problems].
It is very common for those suffering with M.E to struggle with heart problems, too.
If you google it, you'll find tons of information and others who struggle with it, too.
There have been many studies conducted about those who have M.E and having heart problems as a symptom, so you're not alone and it is very much so a part of M.E, unfortunately.
Beta blockers are very good for heart problems, so hopefully they should calm your symptoms down relating to your heart.
I hope you feel better soon, and your heart behaves itself!
*sends gentle hugs and positivity*
Quote:
Originally Posted by Rodolphus
Needed 6 out of 9 markers for a Hypermobile Ehlers-Danlos diagnosis and I apparently have 9 of them with gusto, haha. I've been fighting doctors to take my pain serious for a really long time.
Some doctors say Fibromyalgia is all in your head - doctors blamed my mental health for everything, but now I have this dx they can't do that.
I've had this since the day I was born and they can't brush me off any more.
I dislocated my hip and damaged a tendon on Tuesday last week and holy **** it's been a rough week.
I still can't put any pressure on that leg without a hell of a lot of pain, I tried today and felt my hip subluxing and thought I was going to pass out.
On the plus side, I'm getting arms like hulk from using my crutches :P
I know I need to be patient whilst it heals, but it's so frustrating.
Changes in progesterone levels around menstruating time can affect cologen function, and therefore joint stability, apparently.
TMI, I'm aware, but my period started this morning so maybe that's why I've not felt much improvement yet.
I don't know. I'm tired.
Hey lovely <3
I'm sorry you have all 9 of the markers for a diagnosis, alongside your other health problems too!
On the plus side, at least doctors can no longer blame your mental health!
Some doctors fail to look past the fact that okay, yes, you have mental health problems, but that does not mean you cannot have medical health problems, too.
I've had experience with this, too.
Luckily, my GP believes that I am ill, medically speaking, as well as other professionals.
I think when doctors come out with such utter BS as to blame medical problems on MH, I'd recommend they go back to college :)
Especially as there are many studies that have been conducted that prove both M.E and FM ARE medical illnesses.
And when you have dozens of symptoms that indicate as such, and they blow it off as part of your MH, it is just plain ridiculous.
I've learned not to take any notice of so called professionals, and those in society, who deny the existence of M.E/FM, it doesn't really do much except piss me off and that isn't exactly good for my health, either!
I just say to myself
"Yeah, yeah, whatever you think, because you've been in my shoes and suffered the symptoms that I experience every single day, that has affected my life severely, that has ruined my life, that has f*ked everything up for god knows how long now, so of course you're right!"
&Then smile and walk away :P
I remember you telling me about your hip, I'm sorry it's been a rough week!
Make sure you REST and do not do too much!
It could make it worse if you try to do too much and use your hip more than you should!
Hulk arms :P
Hmm, nice!
I know being patient is frustrating, especially when you are now more limited in what you can do, but you'll get there, time is a healer as they say :)
Periods can make things much worse, so it's no wonder you've not felt much improvement/are tired/and I imagine exhausted!
Rest muchly, fluids, try to keep eating and building your strength up!
Don't do too much pretty please?
<3
Lots of love!
xxxxxxxx
How is everyone else today? Sending love & positive vibes! x
Thanks guys :) I have googled, just my doctor seems to think it's something seperate so I was just wondering quite how common it is! I put it to him that it is a symptom and he agreed, he said it just seems seperate because it's not just fast, it's constantly racing without beta blockers. Hey ho! I don't mind now it's sorted tbh!
Marie, I'm really glad they can no longer fob you off with mental health crap, although obviously it's not great you have another thing to add to the medical list! At least now you know and will be taken seriously full stop.
God, I feel so much for you and your hip. It's not the same but I dislocated my jaw (watching tv and resting on my hand hah) a while ago and it was truly awful pain, constantly feeling sick with it - I can't imagine for a joint so big as the hip and so necessary! I really hope it starts healing soon for you.
Emmel, have you asked if there's another way to take it which might absorb better?
Emma, sorry to hear your struggling, I hope they start behaving soon and give you some peace
There will always be a happy ending. If its not happy then its not yet the end.
caz, i'm glad they're treating it, just a bit confused as to why they wouldn't put me on a different form of iron that i could actually absorb. *shrugs*
Iron is quite difficult for the body to absorb and other foods and drinks can limit it further. Have you been given any advice on how to improve the absorption of iron? I have a link somewhere I'll try to remember to dig it out
I think it's really neat that there is a thread just for this. It's easy to feel alone dealing with chronic pain and emotional issues. Seem like this would help us not feel so alone.
I deal with a lot on chronic pain/illness. I have chronic migraines, chronic neck pain, fibromyalgia and IBS. I know that dealing with all of this really makes my depression and anxiety worse. When my anxiety is worse, then I tend to cut more. It's a vicious cycle that I am sure you all can relate to.
^ So glad you've found the thread :) I made it for exactly that reason, the effects of chronic illnesses on mental health is seriously underestimated. How are you feeling?
Sarah, Emmelberry & Caz, thank you for lovely words :) <3
How are you all?
I went for a check up on my hip this morning. New doctor but she was nice, I've been referred for physiotherapy :) On crutches until I've seen the physio (and then it's up to them!) but she said that my muscles feel okay and I've not noticably damaged them, which is always good to hear, it's just tendon damage.
My lady found out about a gym membership which is unlimited gym and swimming for £12 a month :D I was told by the EDS specialist that the best exercise to strengthen my muscles are low impact like walking, cycling and swimming. When my hip is better, I'm going to sign up :) I adore swimming and having the unlimited swimming will be very cost effective and I'll be doing some very light bike and treadmill work when I can - I don't have any intention of bodybuilding or running a marathon, I just want to help my body :) I'm looking forward to it, and with it being unlimited and a good price, if I need to stop after ten minutes because it's too much, I can stop and try again the next day without feeling like I've wasted money.
Sorry for rambling!
Emmabob, are you feeling any better?
Lots of love :)
Now I'll play your ghost as my ace, whenever I'm led astray.
But I am actually good, can't help it if we're tilted.
I'm in my right place, don't be a downer.
My sleep pattern has gone nuts it's usually about 3am that I can sleep now, despite being more than ready to sleep from about 8pm.. My brain just won't shut off and it's so frustrating! It's since new tablets, due to call my doctor on Wednesday about them and been looking forward to it for about a week to either change them or up the dose.. I'm just getting desperate.
My concentration is shocking, I can barely do any uni work and I just feel really sore and miserable from it
Fingers crossed whatever happens on Wednesdays helps!!
I was on mirtazapine before this and it was wonderful for sleep, I felt much more alive! But I had a serious side effect of chest pains upon walking/ exercise so I had no choice but to change it.. Delayed telling my doctor about the chest pains for a week so that I could have another week of sleep after the crap sleep the weeks before! I want to go back to it but I'll never be allowed
There will always be a happy ending. If its not happy then its not yet the end.
I have not been feeling well and can't seem to catch a break. The frustration is making me want to cut. Does this happen to you guys? And what do you do to deal with the frustration without cutting?
caz-insomnia sucks. health impacting on uni sucks. i send optional sympathy and hugs. i'm assuming you've tried the usual sleep hygiene, whatever exercise you can do (as vigorous as safe and doable), maybe melatonin and calming stuff of choice (incense, pets, phone/computer off, ASMR videos, herbal tea, white noise, music, whatever). hope doctor helped!
alaura-don't deny your frustration. acknowledge why you think you should be allowed to be frustrated and write it/scream it/blog it/rant it. sometimes things are really damn unfair. that's ok. people deal with frustration all the time without cutting. i just have to remind myself of that. there are loads of things for dealing with anger, a lot of the time it's just getting through those really tough bits. you know all that stupid stuff people tell you to do? like punching pillows or holding ice or throwing something or crying or any of the calming stuff i mentioned above? usually i just write it off. it can be easy to react with WHY WOULD THAT HELP ME WHAT so just actually make yourself do it. make a distraction box. make a list to check off. i also find fatal to the flesh (the website) helps but other people find that really super triggering. tread. with. care. my mum runs a self help group and it really helps so many of her members. seeing people living with an illness makes it doable. you're in it together. you can give a big rant to someone about how awful being sick is or other times you don't need to because they already know what you're feeling.
Elderberry, I really appreciate your reply. You are right that those things do help, I just have to remember to use them. I am finding that distractions are helping me get through urges. Thank you for you input!
On a positive note, I recently started on some new pain meds from my doc and I have been feeling better. That is taking away some of the frustration that the pain adds. I hope everyone else here is feeling as well as possible!
more so I don't slip into e.d behaviours now I'm actually fat aha. Sad times. 
it's usually about 3am that I can sleep now, despite being more than ready to sleep from about 8pm.. My brain just won't shut off and it's so frustrating! It's since new tablets, due to call my doctor on Wednesday about them and been looking forward to it for about a week to either change them or up the dose.. I'm just getting desperate.
