Sweating

Hi, I've had M.E./cfs and Fibromyalgia for 23 yrs.  In the last 3 years I have been going down hill extremely fast.  I have had to slow down due to how it is affecting me but it just on keeps getting worse.

I have the problem with heat that suddenly I'll go extremely hot for no reason.  My problem is that I don't sweat in comparison to how hot I am feeling.  In fact my skin can still feel the cold of the outside least I am boiling hot inside.  Now that really is confusing!  Unfortunately because I am not sweating the heat out I have now collapsed twice (once very severely) when where I am is hot to non M.E. sufferes.  I now can't be in the changing rooms and by the pool during my kids swimming lessons cos that is where it has happened.

In terms of Heart I have had a 24hr ECG done and if I am standing up I am always over 100 going up to 145 just going up a flight of stairs.  A Cardiologist is refusing to see me cos I have M.E. He says I have Sinus Tachycardia and the Ischemia was nothing (it did happen 3 times though inculding in my sleep!)

I have now recorded my blood pressure.  It was fine when sitting and laying down but not when I'm standing.  My pulse pressure (the difference between the 2 blood readings goes between 7 and 51 within 10 minutes.  40 is the normal with according to the internet anything else not good.

In a couple of weeks time I'm going back to the M.E. clinic to show them my findings and hopefully get some help.  My Gp thinks my bodies regulator of the pulse pressure has gone wonky, same as my temperature regulator.  Wish I was a car so they could just be easily replaced.  My luck if I was a car they would just scrap me saying it's not worth it cos something else will go wrong before you know it.

Hello Ravenwood,

I don't have any answers for you (!), but I wanted you to know that this is the first time I have come across someone else with these symptoms. I call them my 'attacks', and most people don't understand or believe me - except my GP, and I have been tested for everything, but more of that later, and my 'ex'. This is what happens throughout the day: I suddenly get a 'funny' feeling, and no it's not a panic attack, then I start the extreme nausea, have horrendous palpitations, start burning up, and eventually sweat all over profusely. When it happens I just have to sit it out, or lie on the floor if I am at home, and tell myself that it is physical and NOT mental. Once it passes I am 'alright' again, as far as you can be 'alright' with CFS. This happens at night too, which is even worse, and when I do too much it stops me sleeping almost completely. The only solution is to do hardly anything for a number of days!

I was diagnosed about 7 years ago, tried to keep working and crashed about 4 years ago, against all the odds was retired on an ill-health pension, thanks to an excellent GP who investigated/referred me for everything under the sun, but no abnormalities AT ALL except a query over Epstein-Barr (yes, I had glandular fever as a teenager, and never felt the same since, and that's decades ago) . In fact I believe I have had CFS proper for at least 12 years.

My theory is that possibly the body is trying to get rid of toxins (the one expensive thing I did 2 years ago was have all my amalgam fillings removed; I continue to take supplements to detox from mercury, and I am definitely better than I was prior to this), and/or it is as a result of mitochondrial failure - they are the powerhouses of all our cells, and one theory is that the mitochondria in CFS patients no longer work properly. I will ONLY follow things for which there appears to be solid medical evidence. This latter idea is appearing in the press a bit now, so I try to stay positive. 

Obviously I want to get properly better, and it is a real challenge to stay sane sometimes, as my old life involved being active, holding down a job, climbing mountains with friends, but I am not giving up. So I am thinking of looking at diet and even maybe fasting, as there was research on this possibly resetting the immune system. 

Don't take my word as gospel, please, these are only my theories relating to me, as everyone has a different story, even if some of their symptoms are the same. I do actually believe that one day an answer will be found. In the meantime, I'm not giving in to this. 

Sorry to ramble on; this is the first forum I've ever joined, so it's good to let off steam!

Look after yourself.

 

I, too, live in the U.S. As with any other country, many doctors here are uninformed about ME/CFS. But there are doctors who are informed and even specialize in this illness. Is there any way you could see one of these doctors? Where do you live in the U.S.? You can do a Google search for specialists in your area. It would be so helpful for you to have a professional in your corner.

Hi, you could perhaps get your thyroid checked for any problems

Hi Ravenwood.

I also have a problem with sweating.  It happens a lot if I walk too far or too fast, even on a freezing cold day. It's horrible and it makes me feel quite sick and dizzy too. Genarally I find it difficult to regulate body temperature and over-heat easily which i am sure is down to the ME. Just getting dressed or cleaning my teeth can have me sweating buckets most days. This has not been a consistant problem though - bad at the onset 9 years ago and then it seemed to improve for a while but got worse again in the last couple of years. The fact your sweating has become worse since slowing down is probably quite random - you know how this illness can fluctuate and not necessarily corralate with activity levels.  As you said, you had to slow down because you were struggling to cope with the symptoms so it's not really so weird that a new symptom developed as you entered a different phase. If the cardiologist isn't concerned then try not to worry and sress about it; presumably you've had a trace done on your heart rate recently? If not then ask for one just to rule it out.  Are you getting any chest pain or shortness of breath? I sometimes do, but despite this and having had both chest ex-rays and being wired to monitors nothing out of the ordinary found.

I think we probably all get a bit scared sometimes when a new symptom arises or gets a lot worse but nothelesss it is wise to get it checked out.

Well, I went to the doctor yesterday.  He had nothing to say.  He suggested it might be my heart, but I told him I just say the cardiologist a few weeks ago.  The only thing he wants me to do is to check my blood presurre during these episodes.  He thinks it might be informative.  Sigh.