It has been 14 weeks since I left Mayo Clinic. This morning I called Mayo Clinic because it had been nearly a month since I called asking if Dr. Fealey had any additional input. His secretary seemed horrified I had waited so long and told me Dr. Fealey would personally call me. I was so excited! If you’re just tuning in, Mayo Clinic in Minnesota is where POTS was “discovered” or whatever you would call it when they figure out the cause and name for a disease. He is a top research on the topic and among the best doctors you could see for POTS.
I immediately started making my list of what I wanted to hear his opinions about. It looked a little something like this…
Changes I’ve Made
- less carbs, switched out Gatorade for tomato juice for sodium
- taking sodium tablet
- doing recumbent bike and weights
- got rid of Ambien
- continued with compression stockings
- got fluids at the hospital as needed
Improvements I’ve Seen
- I am up 5 minutes on exercise, but have been stuck at 20 minutes for 8 weeks
- I am still nauseous a lot, but am not vomitting
- I had been told to expect to be easily doing 40 minutes of exercise per day by now
- Not only can I not do more than 20 minutes of exercise, I can’t really do anything else the rest of the day because it fatigues me so much and causes my symptoms to flare up.
- I take 5 mg of Adderall per day, but need to take 20-30 mg to do anything such as go to a family event.
- I have been getting low grade fevers, up to 101.00
- In the evening, I slowly start shaking and by the end of the night I am shaking so hard it can be difficult to even type without hitting the wrong keys.
Questions (answers in italics)
- Can/should I exercise with a fever?
Listen to my body. I should try and get the fever under control and get exercise as it is my treatment. However, don’t be stupid (my words) and overdo it.
- Fluid really help a lot. Should I schedule for weekly IV fluids rather than waiting until I need them?
This isn’t a good idea because my body would become dependent on IV fluids. I should try and get fluids orally. However, I should still go to the hospital and get fluids when I need them. They won’t hurt me if I need them. I just shouldn’t be getting them if my body isn’t in need.
- Is there anything else I should be doing?
I need to try and eliminate and avoid stress in my life. Stress causes POTS to flare up. Other than this, no 😦
The next 5 hours went by so slow. I expected the doctor to wait until the end of the day to call me since he has patients all day long. When he called, he came across as concerned and spent 30 minutes talking to me. He is such an amazing doctor. I trust him so much and never second guess him. He is not getting paid for this time and knows it is unlikely I’ll ever be back up there to see him and pay for an appointment. Here are the highlights of our conversation…
- He encouraged me to not give up hope even though I am only seeing tiny gains, especially compared to what was expected. He encouraged me to anticipate good days. That’s my kind of doctor 🙂 He thoroughly assessed me for signs of depression and anxiety (I could tell he was doing this since I used to do it myself)
- He said it sounds like I may have Myalgic Encephalomyelitis, ME for short, (AKA Chronic Fatigue Syndrome) in addition to POTS. The main things that lead him to this conclusion were the low grade fevers, severe exercise intolerance, and the intensity debilitating fatigue. Hearing this kind of jolted me because for 4 years, I was told I had ME/CFS. Then, I found out I had POTS. I thought, “Welcome back old friend…”
- According to http://www.mayoclinic.com
Chronic fatigue syndrome is a complicated disorder characterized by extreme fatigue that can’t be explained by any underlying medical condition. The fatigue may worsen with physical or mental activity, but doesn’t improve with rest. Symptoms include
Loss of memory or concentration
Enlarged lymph nodes in your neck or armpits
Unexplained muscle pain
Pain that moves from one joint to another without swelling or redness
Headache of a new type, pattern or severity
Extreme exhaustion lasting more than 24 hours after physical or mental exercise
- I have every single one of those symptoms. The enlarged lymph nodes, sore throat, and pain that moves from one joint to another are not that common with POTS. It is possible POTS causes some of these symptoms POTS is the autonomic nervous system malfunctioning. There is no way to know for sure! It is also to note, with ME, extreme exhaustion follows mental exercise/exertions. This is not true with POTS.
- Dr. Fealey made sure to mention he is no expert on ME and also pointed out, unfortunately, few exist. We discussed Infectious Disease Specialists and how they haven’t found a cause for ME. I’ve been to plenty of Infectious Disease Specialists so I knew that already! He cautioned me against people on the internet and people claiming to be “experts” who take advantage of people with ME who are desperate. I can totally see how someone in my situation would be easy to take advantage of. Fortunately, I am a Google maniac and I don’t do anything I can’t find empirical research on.
- The treatment for ME is similar to POTS in that exercise is encouraged. For ME, exercise isn’t really a treatment or solution. There is absolutely no treatment. For POTS, exercise and increased sodium intake can lead to recovery. There’s really no way of knowing what came first, although it is more likely POTS came first. The point is, despite the minimal progress I’ve made, exercise continues to be my only option.
- Being told I have ME is a huge bummer. There is no treatment. While there is no known cause of ME, that doesn’t mean a cause doesn’t exist. It is possible one day they will figure out what causes this and then figure out a treatment. With everything else scientists and researchers are doing these days, I think it seems possible!
- He asked about my social/emotional life. He really thinks the large amount of stress I have been under lately has stopped me from progressing. The doctor said it is a known fact stress causes POTS to flare up.
- He acknowledged it is difficult for someone to be happy that they can exercise 20 minutes a day and then do nothing else and that they aren’t throwing up on a weekly basis. However, these things are progress. What they originally thought I could accomplish in two weeks actually will take me a few months. I have been trying to be grateful for the progress I have made, but it was really nice to hear him say that it isn’t easy to appreciate.
- He told me to never to just accept being as sick as I am. I should always continue working on my treatment plan. My progress may be slower than the line at the DMV, but it IS progress and can’t be made if I don’t keep trying. I should always be thinking that this will pass. He said “anticipate good days”. I like this 🙂 He kind of seemed like he must come across a lot of patients who are just defeated and ready to give up. I already kind of thought all of these things, but it was still really nice to hear him tell me. Hearing a doctor say it makes me feel like appreciating my baby steps, and hoping to get back to full health, isn’t just me being a silly optimistic girl. A world renowned doctor agrees with me.
So in summary, I have ME and POTS. There is nothing more I can do about it because ME has no treatment. There’s no specialist to see or medication to try. I should expect my progress to be extremely slow. However, progress is progress and I should continue with my treatment plan.
Tomorrow I am going to see my GP to discuss the process I currently go through to get IV fluids. I’m hoping to get rid of the blood test!