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Mito Momma

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About Mito Momma

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  • Birthday 09/20/1978

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    Kansas City, MO

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  1. I have been having episodes of what seems like a sudden dysautonomia flare up, but I'm really not sure what's happening so that's why I'm posting. I have a sudden onset of multiple symptoms and I feel terrible. I just have to lay down until it passes, which could take anywhere from an hour to when I wake up the next day. My symptoms include a headache, extreme fatigue, dizziness, shaking, chills, and muscle pain all over (which I already have but it's significantly worse during these spells). I have 2 strange symptoms... the constant feeling of having to urinate and when I stand up I have the unavoidable need to stretch my legs. I had a spell yesterday. I get the chills with these episodes but yesterday I was absolutely freezing. My body must've thought I had hypothermia because my blood was being shunted away from my extremities. My fingers and toes were white. Does any of this sound familiar to anyone? I was diagnosed with POTS/dysautonomia caused by Mitochondrial Disease about 8 years ago. My dysautonomia is normally well controlled.
  2. It's been awhile since I've posted in here. I have been stable for awhile now. I have taken a turn for the worse though. My POTS is caused by mitochondrial disease so it's hard sometimes to differentiate between pots symptoms and mito symptoms. About a month ago I started having these episodes about once a day lasting 4-5 hours. My symptoms start with tingling and discomfort over my entire abdomen. Soon after, I get really hot and start to sweat a lot. I lay in bed w/ cold sweats feeling weak, nauseous, shaky and completely drained for a few hours before I slowly start to feel better. This happened almost everyday. About a week ago my symptoms became nonstop. I've also noticed increased mottling in my extremities and my heart rate is up again. I've been to the ER twice now (because doctors are so clueless and/or I can't get an appt for weeks). They've ruled out infection and a ct of my abdomen was negative. (No surprise there) Has anyone had a sudden increase in symptoms like this? Any thoughts as to why this would be happening? I've been stable on midodrine and metoprolol for many years now. I'd appreciate any thoughts on the matter. -Robin
  3. I have a lot of chronic muscle pain. My neuro at Mayo tried to tell me it was fibromyalgia. I know it's not. That's part of the reason why I have continued to look for a diagnosis in addition to POTS. It is possible that I have mitochondrial disease or other neuro metabolic disorder.
  4. I have applied. I think I started the process around November. I was just informed the other day that they are going to wait for the results of my muscle biopsy before they make a final decision. I had it on Dec. 8th and it's supposed to take about 8 weeks for the results to come back.
  5. I know there are quite a few nurses on here. I was just curious... For those nurses who have applied for disability, were any of you approved? And were any of you approved on the first try? Thanks!
  6. Hey all! I know there are multiple threads about applying and/or getting social security disability on here, but here's another one. I did a search for 'disability' and read many of those threads. Here's the deal. I am an ER nurse. (I know, you're surprised that I'm a nurse.) I can't work due to my dysautonomia. I am also having a muscle biopsy in a couple of weeks to check for mitochondrial disease. I started the process of applying for SSDI about a month ago by filing online. I was frustrated with our financial situation when I decided to apply. I have had recommendations to wait until after I get the results of my muscle biopsy to file. However, it's too late now. I went to my PCP the other day to ask her to write a letter of support for me. I got an example from the youdontlooksick.com message forum. BUT... she won't do it. Even though she's seen me through everything that's gone on since I started getting sick. She said that since she doesn't know anything about dysautonomia/pots, she can't support my need for ssdi. She said I need to go to a Physiatrist (physical medicine and rehab). She referred me to one. A new doc who doesn't know anything about me. A doctor who will do a physical and may not find a need for me to be on disability based on what he sees during the short time I'm in his office. I saw that one of the main things people recommend is supporting documentation from my doctors. I have a cardiologist, but whenever I ask him to do anything he says I need to ask my pcp. Sooooo..... What else do you all recommend? I want to try my hardest to get approved on the first try. I know it probably won't happen, but I'm going to try my damndest! Thanks, Robin
  7. Tearose - I have been trying to work myself even though it's at almost half my previous pay. Can you please explain what you were talking about regarding the "points" and ssdi? I am going to apply for ssdi but I wanted to wait until all of my tests are complete. That way, if I am diagnosed with something in addition to pots, I can add it to my application.
  8. I just revisited my cardiologist last week. He said that my pots was under control. They did orthostatics and my heart rate really didn't change. I was shocked considering that my symptoms are still there. Anyway, he told me that I have gained 20 lbs. since I last saw him and that's probably why my pots is better. I had never heard of this. It really didn't occur to me what he said until after I left. On another note, I wish I hadn't gained those 20 lbs. I wasn't underweight in the first place. I was just in shape. Running marathons and lifting weights will do that to ya.
  9. I take Ambien on very rare occasions. Unfortunately, I usually just lay in bed for 1-2 hours with my eyes closed, counting sheep, before I finally fall asleep. I have only used the Ambien a few times. Those times that I used it I had had something really stressful and/or upsetting happen and I knew I would not be able to sleep due to anxiety, etc.
  10. Wow. I am so surprised how many people are nurses and/or in the medical field. That's very interesting. I am (was) an ER nurse. I have not worked as one, though, since Dec. 1st of 2009. I am currently working PRN as a monitor tech. Of course, I only work 2-3 shifts a month and I am getting paid monitor tech wages, not nursing wages. Even those 2-3 shifts are extremely tough for me. They are still 12 hour shifts. I am usually knocked down for two days after I work one shift. I also think that my nursing knowledge and prior association with the docs I saw helped me get a diagnosis quicker. My PCP is completely clueless. A cardiologist I worked with really advocated for me to help me figure out what was wrong. He knew me fairly well as a nurse and knew that I wasn't the same person anymore. It's interesting that I came across this thread today. I actually had something happen at work yesterday that really upset me. You can read about it on my blog if you want... http://1fastnurse.blogspot.com/ I, too, wish I could use my RN degree (I even have a Bachelor's) for something. If anyone ever figures out something to do from home, let me know. I am waiting until after my muscle biopsy to file for ssdi.
  11. Thanks guys. I got on the bike on Tuesday and felt pretty sore and tired on Wed. However, I wanted to try to do it every other day so I did it again yesterday (Thursday). Now, today, my muscles hurt SO bad. My legs feel like they have 10 lbs. weights on each. I have zero energy. I don't see how I could possibly get on the bike again tomorrow. I am returning to Mayo on Aug. 11th. I had asked to see a neuromuscular specialist. However, they scheduled me with the autonomic nervous system doc I saw the last time I was up there. She didn't want to schedule me with a NM specialist. I ended up talking to her on the phone and she said, "I think you just need more time." She didn't pay any attention to me when I explained my muscle pain and fatigue. I wanted to know what you all thought about exercise, and how it makes you feel. For me, it doesn't seem to exacerbate my typical POTS symptoms (i.e. nausea, dizziness, shortness of breath, etc.). It just causes more pain and fatigue. That's why I want to get evaluated for mito.... If only I could convince my doctor to do so.
  12. I have a question for you all... When you exercise and you say it exacerbates your POTS symptoms, what symptoms does it cause? (i.e. dizziness, fatigue, nausea, headaches, muscle pain, etc.) I have been told that I need to exercise in order to get better. However, 5 minutes on a recumbent bike causes a lot of muscle pain and fatigue. A lot of times I don't feel it until the next day. It's not like the muscle pain experienced the day after lifting weights either. Sometimes I go ahead and exercise on the bike 2 days later so I can get into a schedule of every other day (or at least 3 days a week) but the second time makes me feel even worse. It seems to just compound. FYI - I have been diagnosed with POTS only.
  13. I have the same problem. My lower legs, primarily my ankles, are almost always really cold. If I sit with my legs hanging down or stand for any period of time it gets worse and they also start to ache. I usually try to keep my legs up when I'm sitting.
  14. My "prescription" for a cure was to exercise. When I was diagnosed my docs said that I would slowly get better over the course of a few months with exercise. Yeah, if I'm able to exercise! You said you have not been cured by exercise... What exercises have you done to try to help? Are you on Dr. Levine's program?
  15. Unfortunately this muscle pain is not going away anytime soon. It has been constant since November of last year. I, of course, have my ups and downs. Maybe it just seems like it's getting worse because I'm trying to do more. I don't know. There's no way I could have a massage right now, my muscle are very tender to touch. Issie - I had some of the same issue. I was getting massages once a week for awhile when my headaches first started because I had horrible knots in my upper back and shoulders that just would not come out. They thought that might be causing my headaches. The massage seemed to make me feel worse though so I quit after awhile. I was taking Tramadol at one time which would help but my docs will not prescribe it anymore because they said it can be addicting. So I get to be in pain instead. I am returning to Mayo on August 11th to see a neuromuscular specialist. I will bring up EDS at that time. I just want to make sure all of my bases are covered, you know?
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