Tammy Posted June 17, 2011 Report Share Posted June 17, 2011 Even though there are so many symptoms to try to cope with while living the POTS, one of the most frustrating to me is how weak I feel off and on throughout the day. If I attempt to do anything more than reading, watching TV, etc., I am left feeling so weak. It doesn't seem like muscle weakness, it is more of just that my whole body feels very weak and I have to lay flat down for a few hours and then my body sort of can be upright again for a while. Anyone else have weakness issues? Quote Link to comment Share on other sites More sharing options...
songcanary Posted June 17, 2011 Report Share Posted June 17, 2011 You have just described my life in a nutshell. I have had weakness for four years now. And I just had a horrible spell of it last night when I tried to attend a seminar where my husband was speaking. Drove 35 miles with a friend and had to leave for home before it began. It was humiliating.The only good thing is that my husband is so very understanding. Otherwise, I would like to punch a wall The only thing that 'helps' me is to carefully pace myself, and do far less than I think I can. I feel like a branch that's about to break all the time. I understand how you feel. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted June 17, 2011 Report Share Posted June 17, 2011 I'm not sure what causes this but I also get this, with flare ups. I agree it is probably the hardest part of this condition b/c it is so disabling. It seems like the body can handle only so much of whatever it is that POTS is doing to it, and then can't handle any more! IV saline has helped me in the past get through this, or extra salt and fluids. Quote Link to comment Share on other sites More sharing options...
abnel Posted June 17, 2011 Report Share Posted June 17, 2011 This is one of my most debilitating symptoms. I get it now whenever I push myself beyond what I think are my limits. It doesn't take much. When I first came down with POTS I couldn't even bend over to reach for plates to make myself something to eat, or to pick up something off the floor without triggering extreme weakness, especially in my chest area. It sort of feels like you are dying. It is horrible. I am so sorry you are going through this. I hope it improves for you over time. Quote Link to comment Share on other sites More sharing options...
stacdliw Posted June 18, 2011 Report Share Posted June 18, 2011 For sure, the weakness is debilitating. There are days the thought of walking to the bathroom is overwhelming. Forget about making anything to eat-- I grab a granola bar or a piece of ham ( no bread) because I'm just too tired to exert any energy. I have had Chronic Fatigue, but the fatigue of dysautomia is as bad, if not worse. Quote Link to comment Share on other sites More sharing options...
heathmcev Posted June 18, 2011 Report Share Posted June 18, 2011 Me too - and on days when I feel especially weak (like right now) my hands feel a teensy bit shaky too. But I did too much today... which was barely anything! Quote Link to comment Share on other sites More sharing options...
Chaos Posted June 18, 2011 Report Share Posted June 18, 2011 You have a lot of company here, I think. I know weakness has been one of my most persistent and annoying symptoms. It has such a negative impact on every part of my life, it drives me crazy. It can come on so quickly and for no apparent reason that makes any kind of medical sense- at least from what I know. From my personal experience, it seems like it has to be some sort of systemic process that gets affected somehow. How else can I explain how I can walk into a test (e.g.catecholamine test) feeling fine and end up needing a wheelchair to come out of it because I'm too weak to stand, let alone walk...and breathe? And then the weakness lasts for WEEKS! It's nuts!Appreciate knowing I'm not the only one having this symptom because it doesn't seem to get as much attention as some of the other things connected to POTS, etc Quote Link to comment Share on other sites More sharing options...
DIXZELAND Posted June 18, 2011 Report Share Posted June 18, 2011 I have been going through a flare up since this past Tues. And yes, I feel so weak as one of my symptoms. I describe it as having a virus or the flu feeling. For everyday that my body is weak and tired, it will take me two more days to feel better. My heart rate is so high, I am having to use my alternate bp meds to help keep it down. I don't know what triggered my flare up again, but it's terrible.Hang in there, better days ahead as I always say. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted June 18, 2011 Report Share Posted June 18, 2011 Yes, me too. It's overall weakness, plus weakness to varying degrees in specific muscles. The mitochondrial explanation would make sense with this. Quote Link to comment Share on other sites More sharing options...
heathmcev Posted June 18, 2011 Report Share Posted June 18, 2011 So many of us deal with this - but what do you all do to help when it happens? Quote Link to comment Share on other sites More sharing options...
abnel Posted June 19, 2011 Report Share Posted June 19, 2011 Good question - I wish I knew something that could help. The only thing that helps me is rest (reclining) and time. Does anyone do anything else that helps to shift this feeling? Quote Link to comment Share on other sites More sharing options...
Frugalmama Posted June 20, 2011 Report Share Posted June 20, 2011 Weakness is one of the most frustrating symptoms! You know, my symptoms kind of gradually became more and more debilitating so my DH and I hadn't really recognized how far I had slid. Then one day, we saw interviews on TV with someone with stage 4 pancreatic cancer and another person with an artificial pump working their heart, and we realized that their quality of life and endurance was the same as mine! It was a huge shock to make that connection! I find that resting is really the only thing that helps, as well as staying in nice cold air conditioning i've also started using a wheelchair so I can see my little ones enjoy activities, go for walks with them, etc. It's made a huge difference in increasing my quality of life Quote Link to comment Share on other sites More sharing options...
DIXZELAND Posted June 22, 2011 Report Share Posted June 22, 2011 So many of us deal with this - but what do you all do to help when it happens?I usually just relax all day and all night with little or nothing to do except watch tv, play a hand held game, crossword puzzles, etc. I take advil, and believe it or not, it actually helps me feel better. Be sure and drink lots of fluids too. It sometimes takes me a week to get better or longer before I can resume light activities. Quote Link to comment Share on other sites More sharing options...
futurehope Posted June 23, 2011 Report Share Posted June 23, 2011 In my case, once the weakness has set in, I need to rest. That's it.Obviously, it would all be easier if we could prevent the weakness in the first place. In the past, during vacations, when I've wanted to remain okay, I've used the motorized scooters available in the stores. I'll us them if I know I'm not feeling great and when others with me need to stand and browse. I cannot stand and browse.I can also use a seat cane in the above.Sitting upright for too long (like waiting at a doctor's appointment), takes everything out of me, and I need to recover.I haven't quite figured out how to prevent this, though.On the whole, I think other "normal" people would be surprised to learn the level of disability I deal with on a daily basis, especially since I do not talk about it. (I found out that talking about it does nothing, unless, of course, I need to talk about it to prevent a medical "crises"). Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted June 23, 2011 Report Share Posted June 23, 2011 I have all of this also, but in my case I'd say it's a mitochondrial root cause. Quote Link to comment Share on other sites More sharing options...
hilbiligrl Posted June 23, 2011 Report Share Posted June 23, 2011 hey all, This one symptom, is my biggest and like one of the others had said 'my life in a nutshell'. For 8 years I have had the relentless weakness..... i told my doc it's not typical fatigue, makes me mad when a doc puts in my records 'fatigue' cuz it's not. I can feel it inside as being weakness, no energy..... as if my ATP energy pathways are stopped in process therefore my body doesn't 'make' energy for me, therefore i'm weak from head to toe. It can get aggressive to the point of paralysis or it can less intense, however, still making it hard each and every day. In my worst bouts of it, I was literally bedridden for almost a good whole year..... if I needed to go to the bathroom, i had to slid off the bed and crawl.... walking... just wasnt an option. And to accomplish that, is a major feat.I have never been able to get any doc to understand how this 'feels'.... they put it down as fatigue, but i have to be doing something first, right? for me to have 'fatigue'. It's weakness, inside and out and i hate it. It's my worst enemy. I have been begging my doc to put me on mestinon for a while and see if it might work for me. But due to 'passing' all mg tests, he wanted to look into mestinon for a bit first and he actually wanted to know this site's name, cuz i told him many others on here have used it successfully, yet they dont have mg. He is suppose to be visiting here and reading up on some stuff.The weakness can almost feel like death, or a plague...... it's relentless every day.... even on my good days. It's the one symptom that is always ever present. I wish i knew what caused it...... just my thoughts (as my thoughts and mind isnt working all too well this morning.... ugh)best wishes to all my fellow weak ones out there!tennille Quote Link to comment Share on other sites More sharing options...
futurehope Posted June 23, 2011 Report Share Posted June 23, 2011 Toddm,Has your treatment for mitochondrial disorder helped you? What have the doctors suggested for you as a treatment? Quote Link to comment Share on other sites More sharing options...
hilbiligrl Posted June 23, 2011 Report Share Posted June 23, 2011 Toddm,Has your treatment for mitochondrial disorder helped you? What have the doctors suggested for you as a treatment?Im with future hope.... i just read up on the mitochondrial disease and i am amazed! Sounds like something worth looking into and will be the next thing I will give to my doctor!! However, there can be hundreds of different mitochondrial diseases from what i read? Wow..... I wander how a doc tests for this???? I would like to know more from anyone with it! thanks for sharing this Toddm!tennille Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted June 23, 2011 Report Share Posted June 23, 2011 Tennille that's exactly how I feel, and I've stopped using the F word. What I feel is exhaustion, everytime a doctor says the F word, I say no.... it's exhaustion. The best place to start checking for mitochondrial testing is on MDA.org find the closest MDA Clinic to you. Get and appt with one of the doctors listed there, they will either be a neuro or a geneticist. They can start the proper testing, becuase there are blood and other tests that need to be run before looking into a muscle biopsy. But the bottom line remains if you have a breakdown in any of the 4 complexes of your Electron Transport Chain only a fresh tissue muscle biopsy will find this.As for my treatment helping.....well it hasn't made me feel much different, but most times the best treatment avilible today only slows the progression. Again this is just my case, I hope it helps. Quote Link to comment Share on other sites More sharing options...
hilbiligrl Posted June 24, 2011 Report Share Posted June 24, 2011 Tennille that's exactly how I feel, and I've stopped using the F word. What I feel is exhaustion, everytime a doctor says the F word, I say no.... it's exhaustion. The best place to start checking for mitochondrial testing is on MDA.org find the closest MDA Clinic to you. Get and appt with one of the doctors listed there, they will either be a neuro or a geneticist. They can start the proper testing, becuase there are blood and other tests that need to be run before looking into a muscle biopsy. But the bottom line remains if you have a breakdown in any of the 4 complexes of your Electron Transport Chain only a fresh tissue muscle biopsy will find this.As for my treatment helping.....well it hasn't made me feel much different, but most times the best treatment avilible today only slows the progression. Again this is just my case, I hope it helps.Todd~!!! Thank you so much for sharing this info. Im gonna look hard into it. Believe it or not, I went to the MDA.org websit and i looked up a clinic and there is one that is only 1 hour and 45 mins from where i live (it's in knoxville, tn).... Im going to contact my doctor tomorrow about getting me in.... plus im gonna call them tom!!! I'll have to let you know how things go..... im hoping like heck that they take my insurance. But i guess i'll find out about that tom. thanks so much again!!tennille Quote Link to comment Share on other sites More sharing options...
futurehope Posted June 24, 2011 Report Share Posted June 24, 2011 Do you guys mean UMDF.org? MD is muscular dystrophy. Quote Link to comment Share on other sites More sharing options...
hilbiligrl Posted June 24, 2011 Report Share Posted June 24, 2011 Do you guys mean UMDF.org? MD is muscular dystrophy.future hope:im not sure.... I am checking out the umda one right now and seeing what all it says. Hmmm.... now im confused? I'll wait and see what todd says on here? thanks for pointing that out!tennille Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted June 24, 2011 Report Share Posted June 24, 2011 Mitochondrial disease is an MDA disorder, MDA clinics will see other patients with mito problems and are much better at assessing and running the proper tests. UMDF.org, mitoaction.org and MDA.org are all great informational sites, check them all. For finding docotors close to all of us MDA clinics are the easiest way to go. Good luck I hope you find some answers. Quote Link to comment Share on other sites More sharing options...
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