imre Posted April 7, 2014 Report Share Posted April 7, 2014 I had mono recently, the symptoms started a little over a month ago and lasted for about three weeks. Needless to say this was awful and keeping up with normal life was really difficult. I have been feeling better for about two weeks but still feel a bit of the post mono malaise along with the usual tiredness and symptoms from POTS.One concern I have is that my weekly exercise routine was helping my POTS symptoms. Now with mono my doctor told me not to exercise for at least three weeks, after feeling better. (This was about a week and a half ago). I am fully prepared to follow this advice, but also, I am wondering if there is any special way to ease back into exercise so I don't over do it? I have heard stories of people developing CFS after mono because they have overtrained. Any advice on mono experiences would be much appreciated. Thanks. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted April 7, 2014 Report Share Posted April 7, 2014 I started slow. I had mono many moons ago. Just dx with pots last fall. When I started I did 5 min on the recumbent bike 3 times a week adding 2 min each week to 30 min 3 times a week. That's what my cardiologist recommended. She's not a pots specialist Quote Link to comment Share on other sites More sharing options...
Lethargic Smiles Posted April 8, 2014 Report Share Posted April 8, 2014 I didn't follow the advice to take it easy, although I thought I was. I was out of the game for about a week with a 103 degree fever and I was warned to take it VERY easy for several weeks, especially with how enlarged my spleen was. I took this to mean just don't do too much physical stuff. I sort of took it easy, but to me taking it easy meant still working most shifts, still turning in all my college assignments on time (which required walking a mile), and just excusing myself from class for a week or two, still doing all sorts of stuff..... And 6 years later I'm still sick. I was fine before that. I was predisposed to POTS by EDS and mono triggered it.I'd do anything to go back and yell at that ambitious 18 year old girl to just rest in bed for 2 weeks! I'd tell her just because she is typing research papers from her bed, it does not mean she is resting. I'd tell her she is tired because she needs to SLEEP and repair. I would tell her not to view the fatigue as a challenge, rather to view it as a message.Point: take it very slowly and keep a symptom journal so you can assess if you're going at a good pace Quote Link to comment Share on other sites More sharing options...
lejones1 Posted April 8, 2014 Report Share Posted April 8, 2014 Take it easy. Mono can be incredibly taxing on the body, with effects lingering well beyond the obvious time frame. I had it over a winter break during college. My parents withdrew me from school that spring and although I was furious with them at the time, I think it was definitely the right decision. I thought I'd be back to normal in a couple of weeks but the fatigue actually took a while to dissipate. It sounds obvious but really pay attention to your body - if you're still fatigued and you know it's not just from POTS, don't jump back into your routine. Like Jackie mentions above, it's not a challenge, it's a sign you need to rest. I don't know what your current exercise routine is but can you start back gently? Yoga, short walks, etc? Quote Link to comment Share on other sites More sharing options...
Gemma Posted April 9, 2014 Report Share Posted April 9, 2014 I also had mono, that I think onset my POTS symptoms. It was november 2012, right before my finals in grad school. I still went to all classes, and did all school work. I had 6 classes at that time, one of which was gross anatomy with cadaver lab. Too much stress from school, plus mono, just crashed me. Now 1.5 years later I am still very sick and fatigue all the time. I even start to hate my school now, and blame myself that I just didn't stopped it and maybe wouldn't be as sick now. I ended up taking a year off school anyways, but still sick. I also wish I could go back, and just do it differently and just relax and let my body heal. Quote Link to comment Share on other sites More sharing options...
looneymom Posted April 10, 2014 Report Share Posted April 10, 2014 I don' t have POTS but I had Mono when I was 28. I was teaching at the time and had to take a leave of absence for the rest of the school year. I will never forget it because I got sick on spring break. I had also only been married for 8 months. All I remember doing was sleeping. I could just barely get up, eat breakfast, fix lunch for my husband, and then make it back to the couch to sleep. It was terrible. I do remember that my husband would do the grocery shopping and he brought home lots of orange juice, fresh fruit and I craved oatmeal. I did return to work the following school year, but it was tough. I would come home and take a nap. It took me a couple of years before I felt like my old self again. So I would advise you to rest, watch your nutrition, boost your immune system with vitamins and supplements, and get to a doctor that understands mono. I was told not to think about having any children for at least 3 years. Mono tore my system up and I feel very fortunate to have recovered. Please take good care of yourself and find a doctor that can monitor your condition. Quote Link to comment Share on other sites More sharing options...
Gemma Posted April 11, 2014 Report Share Posted April 11, 2014 Can I ask. Are you sypposed to have fever when you get mono. Before my POTS onset I got really sick. I was so fatigue, my arms and feet felt so heavy and it was so hard to move around. Basicly my main symptom was very bad fatigue, then brain fog, some dizziness. I was told in the hospital that I had mono. However, later on I was told that the test that they did was just to see if I was ever exposed to mono. At the time that I got sick nobody ever ran a test to see if it was active at that time or maybe the blood work in hospital showed that I was exposed before. So, I wonder if one can have mono but no fever. I dont remember having fever at all. Quote Link to comment Share on other sites More sharing options...
Chaos Posted April 11, 2014 Report Share Posted April 11, 2014 I have heard stories of people developing CFS after mono because they have overtrained. Any advice on mono experiences would be much appreciated. Thanks.I believe the studies have consistently shown that about 10% of patients develop ME/CFS after mono so it's a serious concern, especially since you already have POTS. I'd suggest being VERY conservative in getting back into activity. Quote Link to comment Share on other sites More sharing options...
imre Posted April 11, 2014 Author Report Share Posted April 11, 2014 Thanks good advice everybody. I haven't been doing much exercise but I'm definitely feeling better. Unfortunately my school semester is tailing off so there is not much of a break there. I'm making sure I get plenty of sleep though. Thanks again for sharing your experiences. Quote Link to comment Share on other sites More sharing options...
looneymom Posted April 11, 2014 Report Share Posted April 11, 2014 Hey Gemma,Your box is full. I tried to pm you about Mono. I will try to pm later. Quote Link to comment Share on other sites More sharing options...
Gemma Posted April 11, 2014 Report Share Posted April 11, 2014 Ohh, thanks Rachel. I will try to clear it now. Quote Link to comment Share on other sites More sharing options...
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