Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
Hi everyone
I've just joined this site as for the past 3 months I have been experiencing some problems that a friend of mine has stated sounds like I have a case of mild CFS (he has ME himself so knows a lot about the symptoms), but I just wanted some other people's opinions on the situation and just to hear others experiences would be good as there aren't many people around me who understand what's going on.
I haven't been diagnosed by a doctor, I am going to go to the doctor at some point and explain all my symptoms but I know that western doctors aren't very clued up when it comes to CFS so am going to go when I have the energy to sit and explain it to them without them trying to convince me it's something else or that I'm fine when I know I am not.
So, about 3 months ago I was prescribed some antibiotics and ever since then I have not been right. I'm not saying that the antibiotics themselves have caused CFS as now I know what the symptoms are I believe this has been building up for some time, and perhaps the antibiotics were the catalyst for me crashing (again, my friend with ME said this seems to be the case for quite a lot people).
My first experience was when I was on a bus, before I got to the bus station I was feeling very odd...my body felt very weak, energyless and shaky, my mouth was very dry and my heart was pumping harder than normal. As I got on the bus the movement of it seemed to make it worse, after a couple of stops I got off and broke down in tears as I just felt so awful and had no idea what was happening. I went home and rested, but I didn't rest all day...I kept getting up and going into the garden and walking around until I felt funny again then would lay down.
That night I had what I call an 'attack'. My body started shaking and twitching, my body temperature plummeted...I was really cold even though I was in bed fully clothed...my heart was racing/pumping hard, my mouth was really dry, I felt nauseous and really lightheaded as if I could pass out but as I was laying down it didn't happen. I couldn't move all night because when I did my heart went faster, especially on sitting up or standing. I had to get my mum to help me walk to the bathroom in the morning as I was frightened by my heart racing/pounding on standing.
Since then I have developed some food intolerance's (my friend with ME also believes I have dysbiosis of the gut, and apparently this pretty much goes hand in hand with CFS), whenever I eat something that doesn't agree I get one of these 'attacks'.
My friend advised me to rest as much as I could, so I did that for a while. I then decided to do an experiment and try doing some yoga (which I used to do all the time), I simplified it but still did an hour, after which I was on my feet for another hour cooking dinner...by the time the dinner was ready I felt awful. I had to lay down in bed and had another of these 'attacks', I had to wait for a couple of hours before I could eat and it took me 2 days of complete rest to recover.
I find I can be on my feet for roughly an hour before I start to feel very lightheaded and need to sit or lay down.
I don't have much brain fog unless I have had a bad episode, in which case I find I can't concentrate as well as I normally can. One particular time I was recovering from an 'attack' and was trying to read a book, after about 20/30 mins of reading it felt like my brain was shaking and it felt harder to focus on the words so I stopped.
There's a lot more to say but I don't want to ramble on for too long!
I appreciate any responses and advice you have to give, as this is all new to me and it feels really strange to have been able to do whatever I want one minute and now I can only manage to do normal daily tasks.
Thanks so much for reading my long entry!
I've just joined this site as for the past 3 months I have been experiencing some problems that a friend of mine has stated sounds like I have a case of mild CFS (he has ME himself so knows a lot about the symptoms), but I just wanted some other people's opinions on the situation and just to hear others experiences would be good as there aren't many people around me who understand what's going on.
I haven't been diagnosed by a doctor, I am going to go to the doctor at some point and explain all my symptoms but I know that western doctors aren't very clued up when it comes to CFS so am going to go when I have the energy to sit and explain it to them without them trying to convince me it's something else or that I'm fine when I know I am not.
So, about 3 months ago I was prescribed some antibiotics and ever since then I have not been right. I'm not saying that the antibiotics themselves have caused CFS as now I know what the symptoms are I believe this has been building up for some time, and perhaps the antibiotics were the catalyst for me crashing (again, my friend with ME said this seems to be the case for quite a lot people).
My first experience was when I was on a bus, before I got to the bus station I was feeling very odd...my body felt very weak, energyless and shaky, my mouth was very dry and my heart was pumping harder than normal. As I got on the bus the movement of it seemed to make it worse, after a couple of stops I got off and broke down in tears as I just felt so awful and had no idea what was happening. I went home and rested, but I didn't rest all day...I kept getting up and going into the garden and walking around until I felt funny again then would lay down.
That night I had what I call an 'attack'. My body started shaking and twitching, my body temperature plummeted...I was really cold even though I was in bed fully clothed...my heart was racing/pumping hard, my mouth was really dry, I felt nauseous and really lightheaded as if I could pass out but as I was laying down it didn't happen. I couldn't move all night because when I did my heart went faster, especially on sitting up or standing. I had to get my mum to help me walk to the bathroom in the morning as I was frightened by my heart racing/pounding on standing.
Since then I have developed some food intolerance's (my friend with ME also believes I have dysbiosis of the gut, and apparently this pretty much goes hand in hand with CFS), whenever I eat something that doesn't agree I get one of these 'attacks'.
My friend advised me to rest as much as I could, so I did that for a while. I then decided to do an experiment and try doing some yoga (which I used to do all the time), I simplified it but still did an hour, after which I was on my feet for another hour cooking dinner...by the time the dinner was ready I felt awful. I had to lay down in bed and had another of these 'attacks', I had to wait for a couple of hours before I could eat and it took me 2 days of complete rest to recover.
I find I can be on my feet for roughly an hour before I start to feel very lightheaded and need to sit or lay down.
I don't have much brain fog unless I have had a bad episode, in which case I find I can't concentrate as well as I normally can. One particular time I was recovering from an 'attack' and was trying to read a book, after about 20/30 mins of reading it felt like my brain was shaking and it felt harder to focus on the words so I stopped.
There's a lot more to say but I don't want to ramble on for too long!
I appreciate any responses and advice you have to give, as this is all new to me and it feels really strange to have been able to do whatever I want one minute and now I can only manage to do normal daily tasks.
Thanks so much for reading my long entry!
I feel a little alarmed that your heart seems to be a major symptom and I would say anything where your heart is racing or behaving oddly you should check out as soon as possible. Yes, it may be CFS but it may be something else too. Heart palpitations can be caused by lots of things and need to be investigated.
With CFS/ME there is usually muscle weakness and what is called postexterional malaise, where 24-72 hours after 'exercise' (which can be anything from running to moving), your muscles hurt, are weak, feel toxic, etc.
I know Western doctors are rubbish, but they are not rubbish at everything, so if they can diagnose something that isn't ME and treat it, then definitely get checked. In case it is ME, then definitely listen to your body and don't push yourself.
I hope you get some answers soon.
I totally agree with Lupin1. Get things checked out by a doctor.
There is always neurological Lyme to consider. But that can
be difficult to get a proper diagnosis as can DFS/ME itself.
The main thing is to get started Good wishes.
I just wanted to add that I have been to the doctors and had 2 lots of blood tests and everything came back clear. The hospital (after some persuasion) did check for Lymes Disease, but I am going to double check that they did in fact do this.
I have had 2 ECGs and it says my heart is fine.
With regards to the heart, I don't want to make it out to be so bad. It only pumps harder (racing probably isn't the right word because it's not going over the normal rate of bpm) it just seems to be working harder, and this only happens badly when having a bad episode after eating the wrong thing or pushing myself physically. The only other time it pumps harder is upon standing, especially in the morning but throughout the duration of the day it feels normal, which my friend told me was a sign of CFS/ME.
Also I do believe that what I experienced after trying to do yoga was postexertional malaise...my body felt really weak, especially my arms and I had to rest completely for 2 days.
If I don't do too much physically and stay within my boundaries, and don't eat anything that upsets me then all the other symptoms decrease greatly and I feel almost normal. So this is why I think it is a case of mild CFS, but also dysbiosis (imbalance of gut flora) and inflamed vagal nerve. (The vagal nerve system controls heart rate, sweating and salivation among other things, so when this is inflamed it can cause the things it is in control of to act oddly...this is why when I eat something that doesn't agree the symptoms get worse).
I have also developed chemical sensitivity, the smell of perfume makes me feel quite sick.
I am going to go back to the doctor this week and chat about the patterns I have found in the symptoms, and to try and get them to refer me to a cardiologist so I can have an Echocardiogram and a Tilt Table Test; and to see if they can do bloods for checking levels of vitamin D etc.
From what I have learned I don't really believe it is actually my heart that is the issue, it is due to gut inflammation.
I have also done some stool tests to find out the levels of bacteria in my gut and to see if there is anything out of balance...hopefully I should get the results this week.
I think I'm going to get an Adrenal test done to check my levels of cortisol and DHEA as I feel my adrenals are definitely fatigued, and I would like to get a hair mineral test done to find out if I have any vitamin deficiencies.
So thank you again for all your advice and kind words. It really helps!
I would definitely follow your gut, as it were (haha). Antibiotics kill the GOOD microbes we NEED, as well as the baddies. You might want to take a course of probiotics to restore your gut flora, or, if you can get or make some fermented foods -- sauerkraut, yogurt, kimchee, you could try that. Just be sure if you go that route that what you're eating is not pasteurized or otherwise heat-preserve. That kills what you're trying to get back into you.
You may indeed have ME/CFS, but restoring your gut flora is a great place to start since this started after a course of antibiotics -- it's easy, does no harm and will surely do you SOME good.
Best of luck and keep us posted. This is a very caring, supportive and knowledgeable group.
Jack
Geez, I'm sorry you're going through this. I hope you improve. Best wishes to you.
As for the antibiotics, it would seem to me that the illness you needed them for would be more likely to be the catalyst if this is CFS than the actual antibiotics.
At the top of my list to expect your doc to eliminate would be hypothryoidism, lyme disease, hypoglycemia, vertigo and possibly panic attacks. Docs love to diagnose panic attacks.....
But don't let them call them panic attacks and just throw meds at you and send you away. Get the other tests as well and keep a diary as to when it happens, what you were doing, when you ate, were you stressed.
Wishing you well, sorry no energy for more today, Sick with flu and crashing.
Sadly it's a long rode to this diagnosis.