Sweating

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Sorry, this is kind of a long one.  Anyway, I've been sick for 11 years.  For 10 of them, no one knew what was wrong with me (The doctors in the US don't know about ME/CFS, so they sort of agree that this is what is wrong).  Approximately 2-3 years ago, I was feeling so tired and achy that I decided to stop exercising to see if that helped.  It didn't.  Of course, if I knew that I needed to rest entirely, that test might have gone differently.  Regardless, from that point on, I started to slow down.  I couldn't do my evening walks anymore, etc.  But what started happening was that sometimes with exertion I would sweat.  Not a little sweat, but I need a shower afterward sweat.  It wasn't too bad, since it happened only rarely.  Now that I am resting most of the time, and am not living on adreneline, I do feel better.  However, if I overexert in any way, I start sweating profusely, get dizzy and nauseous.  It is now must worse than when I was working full time and not resting much at all.  My doctor is worried; he thinks it might be my heart.  My cardiologist says no.  I think it is some weird symptom of ME/CFS.  Does anyone else have this problem?  Did anyone fine that it got worse after they slowed down?  Admittedly, I am a bit worried.  The doctors are scaring me into thinking something else is wrong.  However, given the number of tests I've had, I can't imagine what.  Anyway, any suggestions, support, etc, I would gladly take.  Thanks!

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  • Posted

    Did you ever get tested for lyme disease ?

    I have CFS, 15 months now,i'm 35 was 33 when i got this, and no sign of improving, i have been saying for a while now 'my heart doesn't feel right' it feels like it beats weaker and that's why i can barely do any exercise (used to be triathlete/marathon runner).

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    • Posted

      Yes, David, I have been tested for Lyme disease. I was told that I didn't have it. An infectious disease doctor ran multiple tests for any kind of infectious disease that I might have had and could not find anything.
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  • Posted

    Hi Ravenwood and David, firstly with ME/CFS the body doesnt self regulate temperature very well in some people (I am one)  i can break into a running sweat when it is cold cool or hot or not be in a sweat in hot of after exercise of any kind ... or feel appropriatly in whatever conditions also will appropriatly sweat  or feel warm or cool... so it is normal for our condition but... dont let that stop you being checked out for other things... David there has been some work done in the UK at Newcastle uni with ref to heart pumping volumes and work done by heart and ME /CFS which has shown an impact on the heart by ME also work genrally has shown an inflamatory effect on all tissue form ME. So yes it has an impact and is worth following up with cardiology to see if it is that and or what they can do to help or if it is something else and what can be done.During flare ups of ME/CFS you do get fever effects as well.
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    • Posted

      Thanks Andrew. I've mentioned the heart thing numerous times to GP and various consultants and they just don't take it seriously. At the end of the day what can they do to help ? Heart transplant ? lol

      I get issues with temperature too, cold hands and feet but not always.

      I'm currently dealing with extreme fatigue and past 2 weeks joint problems, borderline fibromyalgia. The illness just seems to progress no matter what i do.

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    • Posted

      David, if only we knew the answer we would help loads of people..... hmmm hopefully not a transplant be patient and positive and good luck luck, remember a little each day.... and be pleased with that first step, the second will come... at some point - honest! Look up Newcastle heart and me research it is also on here somewhere ... if i find it again i will post it for you! ( i will try and look later...)   
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  • Posted

    Whilst I don't get the same symptoms as you, i thought i'd message as being a heart patient as well, it might help put you at ease a little to know you can have heart symptoms without a serious/known cause.  

    I would of course still suggest you see about getting a second opinion from another cardiologist (especially if your gp still feels uneasy) as it's always better to be safe than sorry.

    I have a birth defect and had a pulmonary stenosis as a baby (now 38) and have a leaky heart valve.  I have struggled with chronic fatigue for at least the last 20 years.  I had always been told that my fatigue is not considered to be linked to the defect, as they would expect shortness of breath, which I do not usually get - certainly not often enough to warrant concern from cardiology.  

    I get palpatations, or palpatations followed by a sudden bang at the end and sometimes like andrew i just feel like my heart is slower or weaker than it should be.  

    I decided to get a second opinion when the heart specialist i was seeing told me it was normal to not get the feel good factor after exercise anymore (i just couldnt believe this was right and wasnt prepared to accept that either) I ended up being referred back to a well known cardiology hospital in uk, over this whole period I have had ecg's, MRI, exercise tolerance test and still nothing seems to be wrong and my heart is considered to be coping extremely well. 

    I would definitely try and get a second opinion for your peace of mind and your symptoms are very different, but thought it might just help to hear from someone who has chronic fatigue with heart symptoms but who has had very thorough checks and no known cause to be found.  

     

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    • Posted

      I have an appointment with my neurologist on Monday. Maybe he could shed some light on what's going on or refer me to another doctor, preferably a cardiologist. Thanks for the advice.
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  • Posted

    Hi Ravenwood, the sweating in CFS is caused by poor temperature control as a result of disruption to the autonomic nervous system (as long as other causes have been excluded).
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    • Posted

      Wow Emma679 right now I want to give you a great big thank you hug (not hard though).  Over the last three years I have been researching trying to work things out. Then above you mentioned Autonomic Nervous System.  I have been going down hill fast over the last three years with more and more things going wrong, it's been rediculas.  How my Gp doesn't say to me "what now" I have no idea (she is lovely).  Over the weekend I googled Autonomic Nervouse System.  Well the amount of things that controls is amazing!  Looking at the range of things which I am having problems with I can't believe The specialists haven't underlined it more to me. That little almonded shaped thing controls our heart rates or temperate understanding so very much! Meeting my M.E. clinic doctor week tomorrow and I'll be bringing it up with her.

      This maybe a big break through for me. Fingers crossed x Thanks

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    • Posted

      Hi Julie, the way it has been described to me is that in CFS the autonomic nervous system (ANS) goes into sympathetic overdrive (i.e. Constant 'fight or flight') and the parasympathetic part of the ANS shuts down (the 'rest and Digest' part). The result is that you start to produce far too much adrenaline and cortisol resulting eventually in adrenal exhaustion and an inability to deal with stress. It also means that you cannot sleep well because the parasympathetic part which promotes sleep, detoxification and digestion is not working as it should.  It is why IBS is common in CFS as well problems with detoxification. The ANS is responsible for your heart rate and blood pressure and temperature control, so if it is disrupted all these things can be abnormal.

      The cause of the ANS disruption in CFS as far as I know is unknown, but there are theories that a virus/emotional trauma can affect the amygdla in the brain which then sets the ANS into sympathetic overdrive, which also suppresses the immune system.

      In terms of treatment, I would be interested to hear what your doctors say, but I have read about the importance of trying to get the body out of 'fight or flight' and into the relaxation response as much as possible through meditation/ relaxation techniques, as well as CBT. The latter attempts to change patterns of thinking which might be perpetuating the 'fight or flight' response, for example negative thoughts which can cause panic and despair. I don't know if any of this helps, but I found meditation central to my recovery. CBT didn't work for me, but I found other techniques for trying to change unhelpful thought patterns very useful. Sorry if I am telling you stuff you already know. Good luck. 

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    • Posted

      Emma: Ditto for me, regarding meditation. I took a free online course on meditation and mindfulness. Both of those practices have been extremely helpful in promoting relaxation for me, as well as helping with my attitude. CBT didn't work for me either, though I'm sure it's a useful coping tool for some.
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    • Posted

      No you weren't, so thank you for describing it.  Mine didn't start from un illness we know that but I had a bit of a stressful family livfe so maybe?  Unfortunately there is also another element to Fight or flight which is not well understood and that is 'fight, flight or freeze'.  It is more understood in animals ie, when a rabbit freezes in car lights and when animals and insects fake being dead. Like u think a spider or mouse is head then it suddenly gets up and runs off.  It looks like my body can also 'freeze'.  It is known in humans during sexual assault and we have no control of it, but the Auotmatic Nervous System does.  Also I have been diagnosed with Funtional Movement Disorder, another thing controled by the ANS.  Looks like I could do with a replacement ANS cos mines got numerous faults. I'll let u know how the M.E. gp meeting goes.

      Must say I feel almost constantly stressed! x

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    • Posted

      Hi Julie, yes I have heard of the freeze response too and it makes sense with respect to CF too.
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    • Posted

      Yes unfortunately it does.  So far the longest I have been 'frozen' is 1.5hr.  Sometimes I can unfreeze myself. Other times it needs someone else to find me.  It can be just my legs or all of me.  It does seem to be a rare one so hopefully more of you won't have to suffer this one.  xx
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    • Posted

      Crikey Julie, not heard of a freeze response being so literal. Hope you don't suffer with this too much. X
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    • Posted

      Wow!  An hour and a half?  I, too, have never hear of anyone being stuck for that long.  Mine are like 30 seconds.  I hope you will be okay.  Take care.
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    • Posted

      It's strange how I get different levels of 'freeze'.  If it's just going to affect my legs and maybe arms too my eyes stay open and I can speak.  If it's a bad one which affects all of my body it will shut my eyes so I can't open them, also I will lose my speach.  To alert someone I try to say "stuck" but it has to come from using my lungs. Cos my mouth won't work to form words. It's very strange! I'm also stuck doing whatever I was doing at the time. So I've had a book stuck in my hands for over an hour unable to let go.  Sharp knife too. It's weird!!!

      Me and my hubby had this idea if my body is 'Freezing' me due to thinking it can't 'fight or flight', then maybe if I pictured the opposite emotion when it sets in it might release me.  So with the idea it's got my unconcious emotions in fear, I would picture a really happy moment which can't be linked to fear at all. Last night a 'freeze' happened so I then pictured Christmas day with my kids on the floor surrounded by wrapping paper and great gifts.  It worked! I instantally released. 

      I did then go on to have a really, really bad emotion related physical session which was not good.  So it's still definately in the earlier testing mode. 

      When I'm having the seizures if I stop them too soon sometimes it can then trigger more seizures again and again.  So it might be that I have to let the 'Freeze' happen for a time then release it with the happy thoughts. Giving the internal emotions long enough to work through without causing more internal upset with the emotions.

      Possibly complicated but I might of found out how to stop myself being 'trapped' in my body during a 'freeze' for long periods of time.  Which will be great! 

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