CFS / tachycardia / AS

[Worldofmeb]

I always seem to have CFS ever since i could remember from bout of mono. Fast forward ten years later got sick with some sort of uti that caused prostatitis along with ReA (Reactive Arthritis). Ultimately, this moved up to the spine causing AS, maybe who knows.

Symptoms are always new and of autoimmune. I frequently get bout of tachycardia (Fast heart rate) out of nowhere. The doc mention IST (inapp tachy syndrome).

I have taken everything from abx to NSAID and nothing seems to be to help. Along with this came to blood pressure which I take Bp meds but also needs NSAID. I was advised not to take both so I'm not sure what to do.

I've taken TNF in the past without much success but I can tell it was reducing inflammation for sure.

On top of this, I have elevated Ck Levels. The biopsy shows some sort of mitochondrial issue. So the doc said I have a mitochondrial mild version.

The doc is also saying I may have POTS since I'm always feeling dizzy & lightheaded.

I am so freaking confused as to what to do at this point. Can't take NSAID due to BP, abx don't seem to help anymore. I'm always in pain and fatigue as well moody.

The only option I have at this point is another TNF. The worst part of all this is random tachy feeling I get.

Anyone else in similar situation & what have you done?

Situation: CFS / AS / BP / POTS

 

[Worldofmeb]

Any suggestion by anyone?

Lately, I have been having bad episodes of feeling really lightheaded, out of breath from simple activity, shortness of breath, fatigue, heart burn type of symptoms. I went to my doc who did an EKG and it was abnormal with ST elevated in Lead 2. Doc said he would get with cardio and call me back. The EKG it self show inferior myocardial / pericardial but doc called and said cardio didn't think it was important, no worries.

Where are my symptoms coming from?

 

[BeautifulDay]

Hang in there. I suggest doing a search of POTS on this site. You'll find a lot of information.

Everyone has different experiences. But here is mine.

Along with lots of symptoms I had POTS early. I'd get that feeling of doom before the electric shock that sped up my heart. Sometimes I'd feel slightly nauseous. Often mine was triggered by walking to my car and driving, but often it just would decide to go off on it's own. Now that I'm older, I no longer have tachycardia's, but instead low pulse pressure. If I stand for a few seconds without moving, my blood can't make it back up into my head (from my thighs and stomach) and down I go. So in stores when the kids stop to look at things, I've gotta keep moving my legs to get the blood to my head or I go down.

Since then our family has been diagnosed with Mitochondrial Disease. What helps us:

Pacing (listen to your body and take it easy when needed). That when needed part changes depending upon if recently ill, or heat of summer, or for countless other reasons. Listen to your body. Reset your expectations.

Coenzyme Q10 (me 600 mg a day (me) and 300 mg a day (9 year old) and B2 (100 twice a day me and 100 once a day 9 year old). We also take D3 (daily in winter) and B12 (once a week).

Exercising when we can. Exercising when exhausted is counterproductive. Don't do it. However, exercising (walking for me helps when I'm up to it). But it's like a mountain. Right now I'm doing an hour walking on the treadmill a day. My current routine. 12 minutes at 3.2 mph. 3 minutes at 3.6 mph. Then repeat three more times. I'd like to be healthy enough to not have to rest after each section -- but I do. So it's actually 12 minutes and then lay down for a while. Then 3 minutes and lay down for a while ..... Yet, two months ago, I was at 30 seconds of 2.8 mph and that was it.

I expect it to be knocked back down again and then will have to re-climb the workout mountain again for whatever reason. I also don't do it when I'm tired, or feeling worse than the day before. The problem is people with mitochondrial issues don't produce enough energy and overdoing it can cause a lot more harm than good. Yet, exercise can increase the number of mitochondria producing more energy. So it really needs to be directed by the patient and what he/she is feeling. There is no guilt for going back down, or taking days off. Listen to your own body.

Have you had the exercise stress test and do you know your oxygen uptake and also how quickly you flip to aerobic energy usage? Any issues, such as dental cavity, yeast infection, etc.... can make the POTS worse -- so try to be the healthiest you that you can be.

Here is just one of many examples of POTS being related to mitochondrial issues.
https://www.autonomicneuroscience.com/article/S1566-0702(15)00290-8/abstract

 

[Worldofmeb]

Do my symptoms really sound like POTS? But, my heart doesn't race if I'm standing up nor my bp drops?

I usually get really bad migraina type of headaches every single day I never had before. I feel like there pounding and blood rush feeling.