A fresh start (4)

Hello everyone,
It has been a while.. I stopped visiting Phoenix Rising for a time because other things happened in my life, some complicated turns in life made me too tired to focus on anything else.
The medication was working, I felt better on that part. Not 'great', but slightly stronger in most ways. Still massively tired and exhausted but I was better able to deal with it. Less trembling, less dizziness, less moments of feeling excessively hot and ill. The muscle twitches had stopped, and my eyesight/focus was better. I felt more clear in my head, could ride on my bike and notice all the traffic around me clearly etc.
It was better.
But it changed about three weeks ago.
Everything started to get harder because exhaustion was getting worse and worse. My muscles feel so tired, so feverishly tired. Even chewing my food makes me take 'chewing breaks' because my jaw muscles feel so tired and heavy. Opening a bottle-cap, or writing with a pen. It all feels heavy and difficult.
I feel so hot all the time, feverishly hot. My back feels that way the most, it feels so hot that I really feel ill. I just want to lie down all the time, and wait for it to go away. But it does'nt, nothing makes the overheated feeling go away. I have no fever, I have no idea why I feel so hot.
When its morning, and when I wake up I feel so horrible. My brain is a heavy haze of heaviness, my whole body feels overheated and sore. My left side is most sore, especially my left chest and back.
When I wake up in the morning my eyes cannot focus well, and my balance is off. When I go to the toilet often stagger and bump into things.
Drinking lots of water when I wake up makes no difference anymore. I still do it, but it has no effect.
I have some other odd things going on too. My nose is constantly irritated, each morning some blood comes out. When I touch it on the left side, it hurts because inside its never really healed yet. I suspect it might be a cold sore kind of thing that is not going away.
The worst thing of all is that my memory problems are really terrible at the moment. I am dazed and confused. I am trying so hard every moment of the day to focus on what has to be done but I forget absolutely 'everything'. It drives me crazy. I cannot think, cannot focus, cannot finish thoughts. I feel so horrible. I am in the house all the time and never go anywhere anymore.

My next appointment with the neurologist is in October. I have this festering fear that he will stop helping me after that. The Tilt Table Test was done, medication was prescribed.. I fear that that was it. I fear that there will be no more help. My blood pressure is normal-ish at the moment, its often around 110/70. So that cannot be the issue right? Maybe I should do a standing test here at home again to see what happens.

I went to my GP yesterday, to ask if she could test my blood for vitamin, mineral etc shortages. And whatever she thought would be useful with the symptoms that I have.
She turned out to be ill, so I had another one. He, had 'no idea' about what POTS was, what the medication was and could not open the files made by the neurologist. He could not see anything about POTS in the files except for the fact that I had asked if it could be tested. So he questioned me about if I was medically trained or not. I said no, and explained that I had been searching for the cause of my problems for years and years. He did not answer to that. I do not know what his thoughts where.

I asked him to test my potassium levels, which is what the neurologist advised, he had told me to wait for three months and then have it tested. So I asked for that.
I also asked what else he thought would be good to test, to find what the cause is of the symptoms above. He said he was not sure. He decided to do the general blood count etc.
I asked him to add other electrolytes and he added magnesium. And I asked him if he could maybe search with me for reasons of tired muscles and hot flashes. But he was not sure what to test for.

So, the bloodwork is done now, I have to wait for the results. But my hopes are not really high.
I wish my own GP had been there, she does not know anything about POTS either, but at least she is open to my worries and thoughts.
I wish someone could help me. I really hope that the neurologist will not stop helping me in October. I hope, hope, hope that he will search with me. And help me.
If not, I am lost. I do not know where to go anymore if I cannot go to him.


"I am trying so hard every moment of the day to focus on what has to be done but I forget absolutely 'everything'. It drives me crazy."

same here, its highly frustrating.

I strongly suggest at this point to seek out a ME/CFS specialist if you can who will know what directions to try to take with your case. The neurologist probably isnt going to be much help thou its good that you are seeing one to be checked out.

Anyone who has ME should see a ME/CFS specialist.
I was just looking back on your other posts and saw that you posted this in June

"For some reason, walking the stairs after riding the bike, causes me to become really weak and feel really bad.
I still force myself to do it because I know my body needs some moving around, otherwise I will just cause it to decondition. Which will make everything worse.
So I do these things even when it takes such a big chunk out of my energy supply."

Im thinking that if you've made yourself worst from pushing yourself like that (or do you know another reason why you've crashed from 3 weeks ago?).

Though exercise is good for POTS patients, it isnt necessarily all that good for those who have the POTS due to ME and it can make things worst. If your POTS is secondary to the ME, you make your ME worst with exercise and your POTS could get worst too.

Whatever medications etc you try may fail if you arent pacing right and over doing things and hence then getting worst (or the medications can for a brief time cover up that you are getting worst from overdoing it as they helped).

its can be very important to be staying within your limits when dealing with ME (your limits now with getting worst are probably less then they were before).

Take care not to further harm yourself by pushing yourself. There is more risk in that with a ME patient then the risk that deconditioning causes. As a ME patient improves, its fairly easy to gain condition again (but not before).

By doing too much it just causes more deconditioning to happen as one finds oneself actually able to do less and less without getting ill till there is a point in which the person can not even push through it anymore as it becomes so profoundly disabling.

Pushing yourself to do stair climbing and go out bike riding could well end up putting you into a wheelchair. (Many POTS patients do end up in wheelchairs esp probably those who also have ME). Take care and start listening to your body more. Do not ignore your ME.
Thank you very much for your replies, they have been very useful to me because you where very right.
I realized you where a little while ago. Every time I take good rest, I get a slightly more clear head the next day. Every time I push myself, I can be in trouble for several days.
I have noticed that my resting heart rate changes when I rest a lot. It goes higher after some days, making me feel better. When I have been really active, the day that follows will often be a day with a really low heart rate. Sometimes below 45. I do not feel good then.
I am not sure yet, about this phenomenon, I want to keep on checking it to see if I am right or not. In any way I now know that going to far in spending energy, is like robbing my body from the energy that it needs to fulfill its basic functions. My whole body seems to slow down, whenever I have done too much. As if its an energy saving modus, where only the basic things are still active.
I still have to learn how to pace, I did not know the word until I came here. I have never had any advice about it from a doctor. I guess its probably just listening to your body as much as you can.

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