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I’ve been suffering from this problem for some time, it’s rather bizarre but I actually feel worse when laying down, the flatter I go, the worse I feel. I have experienced this in both chronic-mild and very acute forms (in one instance my heart went crazy & irregular whenever I lied down, as well as other horrible symptoms), in the acute form it lasted for a few days (I mean that’s how long I couldn’t lay down without really bad symptoms, my heart wasn’t going nuts for two days straight), during which if I raised my legs higher than my body, it got a lot worse.
I’ve not been diagnosed with EDS but I’m awaiting an appointment to be diagnosed. I normally have POTS-like heart rate increase when I stand up (+20 to 30 bpm, starting laying really flat) but my heart rate monitor has run out of battery power at the moment.
It’s not strictly about being “flat on my back” it’s more of a continuum from upright to flat to flat with legs raised higher than my body. There’s no paralysis.
Any suggestions?
I’ve been suffering from this problem for some time, it’s rather bizarre but I actually feel worse when laying down, the flatter I go, the worse I feel. I have experienced this in both chronic-mild and very acute forms (in one instance my heart went crazy & irregular whenever I lied down, as well as other horrible symptoms), in the acute form it lasted for a few days (I mean that’s how long I couldn’t lay down without really bad symptoms, my heart wasn’t going nuts for two days straight), during which if I raised my legs higher than my body, it got a lot worse.
I’ve not been diagnosed with EDS but I’m awaiting an appointment to be diagnosed. I normally have POTS-like heart rate increase when I stand up (+20 to 30 bpm, starting laying really flat) but my heart rate monitor has run out of battery power at the moment.
It’s not strictly about being “flat on my back” it’s more of a continuum from upright to flat to flat with legs raised higher than my body. There’s no paralysis.
Any suggestions?
Hi PhoenixDown, I know what you are talking about! When I was first sick, the doctor didn’t suspect POTS because I had some of my worst symptoms while lying down! I almost fainted once, LYING DOWN. Ditto with my son. I had weeks where I didn’t have 3 normal heartbeats in a row. This could be from a few things, and for me, I had to peel back the layers one at a time. Do you have any symptoms/signs of hydrocephalus? Histamine problems? Gastroparesis/constipation? If you could fill out this symptoms checklist, it will help us figure out what is going on. The checklist is here: http://prettyill.com/resources/view/symptoms_checklist
I don’t think you are alone with this, but I’ve noticed that it is more typical for those who haven’t been sick for very long (less than a year or two, perhaps?). Thanks! 😉
Thanks for your reply.
Yes I had very severe Gastroparesis/constipation issues and the most excruciation pain I’ve been in during those attacks (felt like my insides were ripping apart). I’ve been ill a lot longer than two years, duration of my illness depends on which symptoms we’re looking at. I’ve never self diagnosed as having POTS, but like I said I have the heart rate signs.
Looking back through my notes it seems laying on my sides helped during an attack but doesn’t make it go away.
Interesting that you mention histamine, I found out that an anti-histamine I was taking triggered these attacks in a reproducible fashion, which was disappointing because for a while they helped a lot. I suspect I have mast cell issues but the doctors where I live are not fans of testing beyond a few basic bloods. Doctors in the UK are strictly told these (FM/ME/CFS/IBS/MUS) are psychosocial problems, with psychological answers. They all seem to make the grave mistake of thinking idiopathic illness is psychosocial by default, they need to be retaught the scientific method (assuming they ever learned it) and be made to practice these three words, “I don’t know”, as some of them seem to think a psychological answer is better than no answer.
This is the kind of research they favour:
http://jp.physoc.org/content/590/15/3413.fullThey ignore sudden onset POTS, also check this out:
“POTS is a syndrome that is diagnosed far more frequently in young and middle-aged women than men, and by the time of definitive diagnosis patients have typically spent several years seeking expert medical opinion for their symptoms. Frequently, these individuals report a distant flu-like syndrome followed by a period of inactivity, followed by more inactivity in response to the unpleasant sensations they have while standing or doing mild physical activity. Thus, a downward spiral of inactivity and deconditioning occurs. This downward spiral can be made worse by related perceptual issues including somatic hypervigilance and fatigue that can be improved with exercise training (Benrud-Larson et al. 2003; O’Connor & Puetz, 2005). However, when these individuals seek medical advice their responses are seen as abnormal and frequently pharmacological treatments are prescribed (Joyner & Masuki, 2008).”
Basically saying: You’re merely paying too much attention to pain signals, and that you’re not really as ill as you say you are, no evidence or objective test for this “somatic hypervigilance” offered, of course, but who needs evidence when you have dogma?
I could go on & on about poor or misleading research.
PS: Why can’t I PM you? I have important (not to mention private) things to say. You are so hard to get hold of.
“The inboxes for the following members are currently full, and to send this message you must remove them from your Recipients or CC fields: Dr. Diana”
Here’s another fun link about medical students misconceptions (You would think these guys are suppose to be up to date on modern research, unlike some of the older generation of doctors).
“If the patient doesn’t agree and they think there is. . .something
actually physically wrong with them, then it is not going to work
‘cos they are not going to believe in it”There is also a double standard where if a patient said that quote, they would be accused of stigmatising those with mental health conditions (Implying only physical illness is real), but it seems ok those in the medical profession to make this distinction.
Thanks for your reply.
Yes I had very severe Gastroparesis/constipation issues and the most excruciation pain I’ve been in during those attacks (felt like my insides were ripping apart).
PS: Why can’t I PM you? I have important (not to mention private) things to say. You are so hard to get hold of.Hi PhoenixDown and other who suffer from that horrible gastroparesis/constipation/delayed gastric emptying! I am working on setting up the treatment trials now. It may be 3-4 months before they begin, but I wanted to give you some hope!This stuff works (I had to run a mini-trial in order to get the patent), so please stay tuned. 😉 As far as PM’ing me, I am SO swamped as it is, and none of us are easy cases, right? I have an advocacy arrangement for personal consults (see the front page of the forum), and I’ve done a couple of those.;) Don’t hesitate to utilize that if you need guaranteed one-on-one, OK? Otherwise, the point of the forum is for us to share our commonalities and learn from each other. (Not to mention I wouldn’t have time to move us all forward with the research if I provided consults all of the time — that would work against what we need, right?). I will continue to answer as many questions as I can, as often as I can, but please keep in mind that I am able to find answers because I have the same symptoms and struggles you do! And with my kids affected, you KNOW we spend a fair amount of time trying to duct-tape everyone together as I work through this! Thanks for understanding…:)
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