Temper, temper...(Revisted)

My mums starting to get on my case a bit about this, (A LOT)…
Does anyone with EM feel there reaaaally short tempered with life/people? Even more so during a flare?. As I seem to be and even the smallest of situations frustrate me, I don’t mean to be this way and when I shake outta it I’m sorry for but it will still happen again!

Also with doctors I’m veryyyy short tempered with them, is anyone else? I get very snappy with them a lot when they just DON’T get it but go on a bit of stupid google info they read and think they know the lot! Trying to argue with me about my own suffering? Today for example, a nurse did a house call to see to my feet/leg sores and was putting quite a lot of plasters on it, and i said to her I can’t have too many on as it burns and irritates and she said no, air gets in to it? I mean really, I wear plasters all the time I think I know! The same lady also tried to tell me she saw you can’t use fans??? That was another argument, what rubbish! And to have ‘read up’ just a little and to tell me (wrongly) what I can and can’t do!

Am I wrong for being so corrective in a snappy manor? As I feel myself gritting my teeth… A LOT!

Hi laura i can really relate with you on short temperedness the way i see it is you dont understand how i feel how much pain im in so dont patronise me. I feel awfull later on but to be honest by now my nearest and dearest should know to leave me be when im in so much pain. As for the medical profession i really wish they would clue themselves up when they are seeing me its so frustrating when you explain wots going on and they have a vacant expression on there face or have the gaul to say whats that im being summoned to a medical as the disability laws are changing in the uk so no doubt they wont have a clue and deem me fit to work full time with EM in my hands feet,legs,face,groin,and underarms so im always in a flare up im really worried about it and its actually making my flare ups worse. I hope your well and staying strong take care jane xx

I strongly believe that EM is also a factor in short tempered behavior, which i have as well. I think that EM amps up our nervous systems so that we not only feel greater pain but also have a greater impulse reactions that are essentially nervous system driven.

i get snappy also, my boyfriend can ask me a simple question and i snap at him without meaning too. the doctors are just plain blind to this disorder, like you said they think what they read on google is what we all suffer from. when in reality it is different for everyone who suffers from EM. i had the doctors tell me at Stanford that my symptoms were atypical to EM, and that they are considering RSD. i know i dont have RSD. A neurologist already ruled that out.... i think they need to get educated on the disorder.....so i am starting to get pissed at doctors as well. and it is not like me to be bitchy to anyone.....but i remind myself to keep my center and not to play the victim.......EM has started to progress to my feet and legs and i told my doc a couple weeks ago and he say's (i think your suffering from restless leg syndrome) what a crock of s. .t. I think i know what it is, i have had it in my hands and arms for over 4 yrs.....i do a lot of research and i know its not RLS.....

1 Like

whow this is really me to a t!!!!!! i'm never seen my short temper assoc with em but when i sat and thought about this i went WHOW!!!!an answer Yes i get very short tempered for no reason. i get feed up with this condition and think why me and why do i have it, so for me when my feelings and thoughts wish i was perfect then my short temper flares badly also i'm struggling now with the change of climate here in nz.

Yes Lauren,my wife has EM in her hands and feet( right hand and right foot being the worst) and she does get a little short tempered at times hovever i try my best not to get to excited when her flares up happen. She also had a Hip Replacement In mid Feb. and just last week she fell and broke her wrist. She is really having a tuff time and I will be there for her as I am sure she would be there for me if the sitution were reversed.Those of us not living with this disease really have no idea how it feels when our better half says OMG their burning tonight but we have to do our best not to say or do anything to upset them and be there to confort them in anyway we can.The Drs. well thats another story , however my wife has a good DR. whose is trying her best to understand and help her as much as she can.

Thank you all for your replys! So good to know its what I thought (EM) and im not just moody for nothing!. Because those closest around me are there all the time they get it he most bt I’ve always said its my EM! But they see it as ‘yeah but were your family wouldn’t make you like that with us’ but trying to explain that it doesn’t matter the person,it just happens! I think even more so i snap with family easily too is because inside my head even without knowing so, it’s thinking ‘by now they should know this’.i try to explain to my mum with when she injures herself and is in pain she screams, curses a little if I were to say what’s wrong she would say ‘shhhh or shut up’ then scream some more, so I try to explain well EM is this constant so its that I wanna scream, shout feeling a lot! It’s soooo true!.

I find I am really short tempered too, glad to see I'm not the only one. I think the lack of sleep and constant pain just wear away at your patience. I also think Don is right, as I know when they did some of the first tests on me, when I was about 8 (so 1985/6) that they showed the effect of emotions on bloodflow and therefore pain. Any stressful emotion, such as anger or sadness, makes the pain worse due to our bloodflow changing, exacerbating the EM. If stress gives you pain, then your going to be snapping at people!

Again it just shows the power of this group that we can all share these things and find that you're not the only one who is doing or feeling things.

Gary, you're a wonderful husband to support your wife so well and to understand that she doesn't mean to be short tempered. It sounds like you're BOTH having a really tough time. You may not have an idea of exactly how the pain of EM feels but it sounds like you're trying to understand, which is more than most people do. Please don't forget that we're here to support you too.


thank you Jane!, oh i know disability laws in UK just now are a joke! Hope it works well for you as how can they expect us to workor even concentrate with burning feet! xx


jane said:

Hi laura i can really relate with you on short temperedness the way i see it is you dont understand how i feel how much pain im in so dont patronise me. I feel awfull later on but to be honest by now my nearest and dearest should know to leave me be when im in so much pain. As for the medical profession i really wish they would clue themselves up when they are seeing me its so frustrating when you explain wots going on and they have a vacant expression on there face or have the gaul to say whats that im being summoned to a medical as the disability laws are changing in the uk so no doubt they wont have a clue and deem me fit to work full time with EM in my hands feet,legs,face,groin,and underarms so im always in a flare up im really worried about it and its actually making my flare ups worse. I hope your well and staying strong take care jane xx

I am dreading my Work Capability Assessment. The person assessing you isn't even medically trained! They tick boxes on a computer program. I had a result come up on Google suggesting that about 32 people within a week of being found fit for work at these assessments. They found that one woman, who had severe mental health issues was found to be fit for work by the assessor as she "was not rocking or huddling in a corner". So when you get your assessment, crawl in and spend the entire time rolling around on the floor, writhing and screaming in agony. Then they might just tick the box that says you experience pain.

Seriously, just emphasise the mental health effects of your disease, such as depression, and always answer the questions as it would be on your worst day and without your loved ones helping you. When you have the assessment, if possible, take an "advocate", such as a family member or a social worker, in with you. I am lucky, I can take my dad, providing they don't change the rules, as I hope that his medical knowledge will help me to get a fair result.

I can totally relate to both your experiences. I get really annoyed when I'm limping to the toilet, whimpering with the pain it's causing me and my mum will say "what's wrong?"!! I know she means well, and she does a lot for me but that one just drives me mad!

Lauren said:


thank you Jane!, oh i know disability laws in UK just now are a joke! Hope it works well for you as how can they expect us to workor even concentrate with burning feet! xx
jane said:

Hi laura i can really relate with you on short temperedness the way i see it is you dont understand how i feel how much pain im in so dont patronise me. I feel awfull later on but to be honest by now my nearest and dearest should know to leave me be when im in so much pain. As for the medical profession i really wish they would clue themselves up when they are seeing me its so frustrating when you explain wots going on and they have a vacant expression on there face or have the gaul to say whats that im being summoned to a medical as the disability laws are changing in the uk so no doubt they wont have a clue and deem me fit to work full time with EM in my hands feet,legs,face,groin,and underarms so im always in a flare up im really worried about it and its actually making my flare ups worse. I hope your well and staying strong take care jane xx

i am pre-med so i pretty much tell my doctors what to do. if they say im wrong i bring in sourced material and say nooo you are wrong. doctors and nurses are just everyday people that get used to doing the same run of the mill disorders everyday. when they see something like what we have, they really dont know what to think.

the person that can help you the most is you. i cant find em in most text books, let alone depending on a health care worker to remeber it twenty years after med school. bring in your papers, and be ready to summarize everything haha.

i love the temper i have now, i can get my way most of the time :D especially using em as an exuse, i can get a lot of favors/leeway with people

i think gabapentin with em, for me personally, makes my temper better. if i need to be mad at someone later on in the day, i just skip my morning dose of gabapentin. when i do get mad/cry/emotional at all, i flare. even if i laugh to much i flare

Great attitude Will

You made me smile this morning, thanks!

Dear Lauren

Thanks for starting this discussion, it's very interesting. I do find that I feel short tempered when having flareups and I know it comes from the pain and probably a combination of medication. However, I tried never to snap at my son and husband as I am so grateful for their presence in my life and also so sorry that my husband has to life through this debilitating disease while he is in good health and could enjoy a more "normal' life. I don,t know if you understand what I'm saying, I know it's horrible for me to experience constant pain but he's the last person I should be taking it out on. The doctors however, that's a different story, if they are trying to help, fine, but if the are patronizing without knowledge of the disease I feel enormous frustration and anger. Hope this helps...

I do have a good neurologist who usually helps me, she’s great but not lately! I only see her every 6 months and past few times changed my appointment to months later? But when I ask for earlier appointments it’s a no can do but she always changes mine for others! Past month I’ve been more or less paralysed in my hands, lower leg and feet… Can’t walk nor stand and cant hold things and struggle to feed myself. I can write this as its on an iPad btw, and my right hands better than my left. It happend over night (when I was in hospital!!) so I think it’s something they have done. Another month I have to suffer this to see my neurologist!!. We’re pretty sure its nerve related? But god knows how to fix it! I have nerve damage anyway had it for 6years, but 17 and un able to leave the house and relying on my mum to do everything for me is tough. Im snapping because I cant do it myself… She’s snapping because she hasnt got time for herself soooo hard


Yeah, I get what your saying… I have quite severe EM pretty much constant! So un meaningfully, I’m snappy and unfortunately my mums always thre so she gets it! When my EM gets bad and I know now il end up snapping I warn her so I’m not cheeky but she ignores and then that adds to the frustration! Especially out shopping. I apologise for it all the time anyway, but it’s just unfortunately how I deal with it.


Dominique said:

Dear Lauren

Thanks for starting this discussion, it's very interesting. I do find that I feel short tempered when having flareups and I know it comes from the pain and probably a combination of medication. However, I tried never to snap at my son and husband as I am so grateful for their presence in my life and also so sorry that my husband has to life through this debilitating disease while he is in good health and could enjoy a more "normal' life. I don,t know if you understand what I'm saying, I know it's horrible for me to experience constant pain but he's the last person I should be taking it out on. The doctors however, that's a different story, if they are trying to help, fine, but if the are patronizing without knowledge of the disease I feel enormous frustration and anger. Hope this helps...

Hi Lauren,

I'm really sorry about how bad your EM is, and it's terrible that your neurologist isn't showing more concern about the paralysis. I'd strongly suggest asking to be referred to Ninewells in Dundee, you'd probably have to be admitted as you've got all these problems, but you'd see experts in EM who won't mess you around. They also have the facilities to do scans of your bloodflow, etc. to see if the EM is causing the paralysis or not. You'd be able to see your neurologist too, so you wouldn't have to choose between them.

I hope that helps you and your EM is a little better.

star x

Lauren said:

I do have a good neurologist who usually helps me, she's great but not lately! I only see her every 6 months and past few times changed my appointment to months later? But when I ask for earlier appointments it's a no can do but she always changes mine for others! Past month I've been more or less paralysed in my hands, lower leg and feet.. Can't walk nor stand and cant hold things and struggle to feed myself. I can write this as its on an iPad btw, and my right hands better than my left. It happend over night (when I was in hospital!!) so I think it's something they have done. Another month I have to suffer this to see my neurologist!!. We're pretty sure its nerve related? But god knows how to fix it! I have nerve damage anyway had it for 6years, but 17 and un able to leave the house and relying on my mum to do everything for me is tough. Im snapping because I cant do it myself.. She's snapping because she hasnt got time for herself soooo hard

Thank you very much for that il speak to my GP and neurologist about it as hopefully when I see my neurologist at the southern she will admit me because it’s the best thing to get this sorted! Get EMG testing too see if something’s effecting my. Nerves. I really think its a reaction to steroids I was on in hospital a month ago and my dr said its quite possible! Who knows? My neurologist at the southern is in touch with a EM expert down in London so I hope she asks for his input.




starsmurf said:

Hi Lauren,

I’m really sorry about how bad your EM is, and it’s terrible that your neurologist isn’t showing more concern about the paralysis. I’d strongly suggest asking to be referred to Ninewells in Dundee, you’d probably have to be admitted as you’ve got all these problems, but you’d see experts in EM who won’t mess you around. They also have the facilities to do scans of your bloodflow, etc. to see if the EM is causing the paralysis or not. You’d be able to see your neurologist too, so you wouldn’t have to choose between them.

I hope that helps you and your EM is a little better.

star x

Lauren said:

I do have a good neurologist who usually helps me, she’s great but not lately! I only see her every 6 months and past few times changed my appointment to months later? But when I ask for earlier appointments it’s a no can do but she always changes mine for others! Past month I’ve been more or less paralysed in my hands, lower leg and feet… Can’t walk nor stand and cant hold things and struggle to feed myself. I can write this as its on an iPad btw, and my right hands better than my left. It happend over night (when I was in hospital!!) so I think it’s something they have done. Another month I have to suffer this to see my neurologist!!. We’re pretty sure its nerve related? But god knows how to fix it! I have nerve damage anyway had it for 6years, but 17 and un able to leave the house and relying on my mum to do everything for me is tough. Im snapping because I cant do it myself… She’s snapping because she hasnt got time for herself soooo hard

I recently used topical steroids and they have exacerbated my EM. They stimulate sodium retention which is also the channel for pain for EM.

Lauren said:

Thank you very much for that il speak to my GP and neurologist about it as hopefully when I see my neurologist at the southern she will admit me because it’s the best thing to get this sorted! Get EMG testing too see if something’s effecting my. Nerves. I really think its a reaction to steroids I was on in hospital a month ago and my dr said its quite possible! Who knows? My neurologist at the southern is in touch with a EM expert down in London so I hope she asks for his input.




starsmurf said:

Hi Lauren,

I’m really sorry about how bad your EM is, and it’s terrible that your neurologist isn’t showing more concern about the paralysis. I’d strongly suggest asking to be referred to Ninewells in Dundee, you’d probably have to be admitted as you’ve got all these problems, but you’d see experts in EM who won’t mess you around. They also have the facilities to do scans of your bloodflow, etc. to see if the EM is causing the paralysis or not. You’d be able to see your neurologist too, so you wouldn’t have to choose between them.

I hope that helps you and your EM is a little better.

star x

Lauren said:

I do have a good neurologist who usually helps me, she’s great but not lately! I only see her every 6 months and past few times changed my appointment to months later? But when I ask for earlier appointments it’s a no can do but she always changes mine for others! Past month I’ve been more or less paralysed in my hands, lower leg and feet… Can’t walk nor stand and cant hold things and struggle to feed myself. I can write this as its on an iPad btw, and my right hands better than my left. It happend over night (when I was in hospital!!) so I think it’s something they have done. Another month I have to suffer this to see my neurologist!!. We’re pretty sure its nerve related? But god knows how to fix it! I have nerve damage anyway had it for 6years, but 17 and un able to leave the house and relying on my mum to do everything for me is tough. Im snapping because I cant do it myself… She’s snapping because she hasnt got time for herself soooo hard