CFS and POTS

Treatment and medication
1

Hey guys, I posted the following in the forums for Chronic fatigue syndrome, but I thought some of you may be able to help me too

thanks.

Hey Guys, I hope you are all well.

I have a few questions to ask, about something that has confused me greatly following my mild (but still horrible) CFS diagnosis a few months ago.

Basically, I am kind of confused as to what constitutes PEM? Lots of sources say it is even greater exhaustion etc following mental or physical exertion.

When I overdo it, I seem to get the following symptoms: lightheadedness, a horrible feeling of pressure in my head, hot face, sensitivity to noise etc. This lasts for up to 5/6 days and I really can't do anything to negate the effects. However, I don't really get any more tired than usual, infact I probably nap less when I am experiencing one of these 'flare-ups' or whatever they are. These are currently occuring in about a 1 week on, 1 week off cycle.

However, the thing that confuses me, and what I wanted to ask about - these symptoms often come on even if I haven't exceeded my limits. Often I have had a very restful few days, no work, no uni, and I have spent a good deal resting, and out of the blue - these symptoms will come on. Other times, I will have had a really hectic night at work (i work in hospitality, would not reccomend with CFS lol), and a busy time at uni and I will feel no worse in the next few days????

This has kind of led me to believe that it may not be to do with PEM.

So what I was hoping you guys could help me with, would be to depart your wisdom on the subject of PEM. how have you found it to work? do you think what I am expereiencing is PEM?

OR, do you think I might be experiencing symptoms of something like POTS? I am not sure whether these symptoms warrant a visit to a doctor, or if a doctor could help me in any way.

Any help would be greatly appreciated, at this stage in my life (a 20 year old boy who was previously very fit), i have accepted that I will be unwell for a little while, I am OK with that and have made adjustments. However, these new(ish) symptoms are really a pain in the neck, and add a whole new dimension to this whole CFS experience.

Thank you for any help you can give me, i appreciate it.

 

2

Hi are you Hypermobile? Can you bend your little finger backwards, bend your thumb to your forearm, put your hands flat on the floor? If you can you are Hyper Mobile. It's NOTHING TO WORRY ABOUT. It is something to be aware of, being Hypermobile is the most common cause of POTS! Other causes which could relate to your age and sex are Alcohol and Diabetes. If you have had a lot to drink you may feel a bit faint, likewise if you have type 1 diabetes but I think if you would be aware of it. Stress does induce POTS, stress really is most unhelpful, I think you may need to address the cause of your stress to feel better. Have you been taking exams, are you looking for a job, problems with friends, girlfriend, parents? 

 

3

In the newish report from the Institute of Medicine in the US includes Orthostatic Intolerance - which would include POTS, Postural hypotension etc as a main symptom of CFS.  I've been diagnosed with both at different times.  They actually renamed CFS/ME Systemic Exertion Intolerance Disease (SEID).  It's a fab report.  I can't post the link here but if you IM me, I can let you have it.  They are so far ahead of us.  Forget the name - which hasn't caught on even in the US.  The report is a great read as it starts with a meta-anaylsis of all the research they could find around CFS/ME and they conclude that it is definitely a physical disease and not psychosomatic which all treatments in the UK are still based around.  Boo to NICE, boo to the powers that be who will ONLY pay for research around CBT and GET.  Did you read the latest - think it was reported in the Guardian?  The reason Graded Exercise Therapy doesn't work for CFS sufferers is because we are afraid of exercise.  What an insult!  I was running 10ks months before I was struck down and my life has slowly shrunk into four walls with a bed and TV when I can bare the light and noise!

4

Hi Pam, think I can post this link as it's from this site.  It does say the hypermobility is strongly associated with POTS but I don't think it is saying it's the main cause.  Sorry to be picky but I just, well a bit picky at this time of night!   

https://patient.info/health/postural-tachycardia-syndrome-pots-leaflet

5

Hi............What you have to find out is, has do you really have Chronic Fatigue the Syndrome itself, which, comes with a certain amount of disautonomia anyway so symptoms are very similar to POTS, or, have you got a form of disautonomia which inturn is causing your chronic fatigue,its a case of what came first the chicken or the egg, so to speak,  if you have real CFS your specialists who diagnosed you for this, wil be ale to tell you if you have unrelated symptoms to CFS, if, in his opinion, you have unrelated symptoms, he would suggest its something else causing your CFS, which is actually what happened with me, a lot of people are mis diagnosed with CFS, and what they actually  have is a nervous system malfunction, im not saying thats the normal for all CFS sufferers though!