CFS & POTS Connection?

[sarahbp93]

Hi guys, I've been diagnosed with both CFS and POTS (Postural Orthostatic Tachycardia Syndrome) and I was wondering if anyone else has been diagnosed the same? I've noticed that there is a lot of overlap with both sets of symptoms which can make it difficult to know which is giving me the most grief on each day and I was wondering if anyone else out there has any ideas to help? My GP seems a bit stumped on how to help me because for POTS people recommend gradual exercise but my CFS makes that next to impossible! Help me Obi-Wan! You're my only hope!

[Alibobs]

Hiya, yes I have been diagnosed with M.E, Pots and peripheral nerve hyperexcitability. With regards to symptoms, they do overlap and it's rare I can pinpoint which symptom belongs to which illness. Have you tried listing your symptoms daily and what you have done daily to see if you can see a pattern.

I know that if I overdo things i.e. Having a shower and going shopping in the same day then my m.e symptoms flare up 36 to 48 hours after I've done too much. It can leave me unable to get out of bed/leave the house for afew days after overdoing it.

I hope ya feel better soon and manage to work out what is causing what symptom!! Let me know how ya get on xx

[sarahbp93 in reply to Alibobs]

Hiya, I have been making notes of my symptoms as often as I can, but as you say it's difficult to pinpoint which one comes from which illness. I think I might just have to try and work with them as well as I can!

I hope you keep well as well!! It's not gonna be easy but we can do it!

xx

[Julia_M]

I have issues with my heart rate. AF and Tachycardia. I still use graded exercise. It started with walking for 2mins only. Just making the effort helped. Now six months down the road i am walking 30 mins per day. How ever it is not running, jojogging or fully exerting myself. It is just a very steady walk. If i am not up for it i do a couple of mins and come back. I found initially my heart rate was quite high but it has started to come down over time. I presume i am getting fitter. I do still have days when just getting out of bed and walking to the bathroom sends my heart rate sky high and causes breathlessness. Then I have a rest day. But get back to it as soon as i feel better.

Listen to your body. Graded exercise works for me. Give it a go, but don't over do it.

Julia

[Lilly2017]

I have both! It's annoying I know. After I had been tossed in a psych ward at 18, after years of telling my mom I didn't feel well, but apparently according to her and my dad I was crazy.

I started fainting after I had my daughter 10 years ago. Despite my diagnosis of CFS and blood work to prove I was right but no...they were smarter than doctors!

I found the psych ward records a few years ago in a box in their basement. I felt ill. I was ill. I had been ill.

Because my BP was too low, my heart rate too high, all symptoms of CFS that she threw in a box without reading it, giving it to me or a doctor, she had my life, the truth, the answer buried down there in a box.

It matters not what I say. I was devastated and angry. I was 19. I had a chance. Now I'll never get over this. And she's still STILL telling me it's all in my head.

I wish! Anyway the point of the story was I was prescribed salt tablets back then, helps the blood pressure.

So does Adderal and it gives you energy. But you also don't want to be put on a controlled substance which you will eventually crap out on. But it's good on occasion. (Then I was crazy and a drug addict..,these people!!!)

When I brought her the records weeping in grief...I TOLD you mom!!! God I told you I was sick. How can you not have looked at this!!!

Shrugging, sorry she said. And walked away. Yesterday I had symptoms of having a flare up. I was ill. Oh think about something else, get out of your head!!

I hang up when she does it now. I just hang up.

Salt. And a ton of water. Adderal is a listed approved drug that will boost your pressure, just be careful. We have medication sensitivity. But I'd try everything else first. Good luck!!