I have a question about working out. Does anyone have a hard time doing this? I get so lightheaded lately and then get breathing problems. Sometimes the problems don't come til later on that evening. I feel like when I close my eyes everything is spinning. Just so odd cause I used to be able to do this a year ago no problem! Just very frustrating and also want to know if it subsides? All my symptoms come and go but it seems this time, it just doesn't want to change.
So frustrated. Just want to stay in shape. I'm not getting any younger. lol
I don't seem to get light-headed, but the strain of working out gives me a horrible headache! I always have to sit down and close my eyes for a few moments before I'm able to get up and continue my workout. I understand your frustration!! I'm the same way.....I want to work out, but I feel as though I'm not getting anywhere because I can't seem to stay "up" long enough to do any good!!
I know, I feel like I get a good day in, sometimes 2 or three. But then the next week I am symptomatic and I can't get the results I am looking for. So frustrating because about a year a go I could work out on the elliptical for 40 minutes hard core and then do about a 45 minute weight session and now, hardly anything. I just don't want to cut it back, but sometimes because of my breathing issues I can't even do a brisk walk to get some good cardio in. I haven't done a new MRI in like 5 or 6 years. I guess I should to see if there has been any changes. It seems that as I get older, I get more symptoms.
Is that usually what happens with us Chiarians? Or is it all different with everyone?
That's how I am as well. I find that I probably shoot myself in the foot because I finally get a couple days where I'm not hurting that bad and not as tired, so I clean the house and wash all the clothes....etc, etc....so then....I'm down for the next few days because I overdid it! Ugh......
I was just diagnosed last month, so I'm VERY new to all of this!! Mine was found by accident because my mom had Multiple Sclerosis and so that's what my Neuro was looking for. When my tests didn't quite give her the results she expected, she took another look at my brain MRI and say the 10mm CM 1. I've been glued to the computer since, trying to educate myself so I can educate others when they ask me what's going on.
I was tired all the time too before I knew what I had. I couldn't do anything without having to just crash on the couch when I was done. Even just doing laundry. I was out of breath and drained like I hadn't slept in days. So weird. It all hit me at once. All the symptoms I had were crazy. Out of nowhere. So weird. I was tested for MS too. When I was finally diagnosed months later I found out I had a 7mm herniation. Dr's told me all my symptoms had absolutely nothing to do with chiari and it was just a significant finding. I did so much research and would tell the dr's that it had everything to do with chiari and they told me I was crazy and to stop looking at the internet that I was causing my own symptoms. One Neurologist yelled at me cause I told him he was wrong and I wanted other tests done and he got insulted. This is a very frustrating condition because a lot of doctors just don't have a clue. I am waiting to see my dr this month to give me a referral to a NS in Richmond that was on the list I got from this sight and am going to request a new MRI and CINE MRI to check for changes and my spinal fluid flow. I never had surgery and don't want to. It scares the crap out of me. lol
Lidia
TexasMom1977 said:
That's how I am as well. I find that I probably shoot myself in the foot because I finally get a couple days where I'm not hurting that bad and not as tired, so I clean the house and wash all the clothes....etc, etc....so then....I'm down for the next few days because I overdid it! Ugh......
I was just diagnosed last month, so I'm VERY new to all of this!! Mine was found by accident because my mom had Multiple Sclerosis and so that's what my Neuro was looking for. When my tests didn't quite give her the results she expected, she took another look at my brain MRI and say the 10mm CM 1. I've been glued to the computer since, trying to educate myself so I can educate others when they ask me what's going on.
Hmm…I don’t think that’s what I have…the only symptom I get is the pressure headaches when I over-exert myself, usually lifting weights or doing push-ups/crunches…
What is dysautonomia? What does it effect? I hate that I can't lift. I love using weights. I actually was looking better and more toned then when I was in my 20's. lol I miss the cardio. My butt actually looked like I wanted it too finally. hahaha. Well, I will do what ever is best. I hate feeling like I lose my breath and like I'm gonna pass out. It really sucks! But like everything else, I have good days and bad. I just have to do all in moderation. I do love yoga too. So relaxing but I feel like I'm not getting the results I want as fast. I try to drink lots of water. I also work two jobs and when I get tired, my breathing becomes affected. I have to sit on my massage chair to relax my muscles and then I can get my breathing back in order. I went to a NS like 2 years ago cause I wanted to have someone to go too if I had issues and he told me if I didn't need surgery I didn't need to be there. I was like, wow, who the hell can I go too when I have issues? My PCP has no clue and this guy just told me just moniter your self and if you get worse call me. Other wise, see ya! I feel like I have no where to turn and never will know if it's Chiari or another issue. This is so confusing. I have gone to the ER on so many occasions and have been sent home with a clean bill of health. I'm not complaining but I know that what I have has no set symptoms. It's an array of so many different things that it has the docs scratching there heads. So frustrating. I am a very active person, so doing nothing is not in my nature. If I feel good, I just go, go, go. Especially the gym. But just when I am on a good roll, I get smacked in the face with, "Oh no you don't!" Ugh! I just don't know if I'm doing damage or just go with the flow.
Lidia Beeba said:
Have you all researched dysautonomia? The symptoms you are describing sound eerily familiar. None of us are getting any younger - lol!! And as a dr said when I pointed out I could do flips on my trampoline before all this hit "well there are no 42 year old gymnasts!!" No chit mon!! I wasn't training for the Olympics!! But I could do it. And when things change drastically why are we the only ones who question it. If you really want/need/should continue to work out - this is what I was told. Do not heavy lifting (especially to large muscles - legs) Pilates are great at a lower resistance than you can actually do. Do more reps but not to exhaustion. A recumbent bike is better all the way around. I can do more with my arms than legs as that will really give me the dreaded palpitations. Drink tons of water. Avoid sweating. If indeed dysautonomia is the case - you do the opposite of what you have always been told - you need the salt - it increases blood volume. Even though I have high bp I was instructed to salt everything. Which really sounds strange. When I limited my salt to help with bp - I felt horrible and my bp actually went up. Yeah nuts!! Dysautonomia does ebb and flow. I do try to enjoy the good days but also have to be aware that if I take too much advantage I will pay. So even when I feel like I can do more - if I don't have to I prefer more moderate days than the big highs and lows. I do seem to be in a good phase right now but I hate to jinx myself. I have had time where I think whew!! That over! Than bam. I always plan as though that may be the case and then get pleasantly surprised - it works better for me than planning for the best and being disappointed. Sorry if I jumped in on this conversation!! Haha. I have had 2 decompressions last one being just over a year ago. Anything that gives you a headache - I say avoid it!! Best of luck.
OK, will do. I heard it mentioned but never looked it up. Thanks :)
Emmaline said:
Yup research POTS(dysautonomia)...exercise intolerance is one of the symptoms. Just got diagnosed with it myself, tho I guess I already knew it from hanging around here...
I have palpitations. Had them since my 20's and all my tests from cardiologist are normal. I have never passed out but have felt like I was going to on several occasions. I will talk to my doctor about this next week. Thanks so much. I will check out the website as well. I am finding out more and more and I thank all of you so much. I was up at 2 am having breathing issues last night and I am feeling so discouraged.
Beeba said:
Lidia - please go to DINET.org. Also go to search tab under the discussion tab here and type it in. I think you will be surprised. I have found few of us who have any residual issues who actually get tested that don't have it. Getting that under control improved symptoms dramatically. What you are saying about exercise is key. Any palpitations? Ever passed out?
lidia said:
OK, will do. I heard it mentioned but never looked it up. Thanks :)
Emmaline said:
Yup research POTS(dysautonomia)...exercise intolerance is one of the symptoms. Just got diagnosed with it myself, tho I guess I already knew it from hanging around here...
Oh wow! Yeah, I never had the test and sounds kind of scary. I only really get dizzy on rare occasions. It has happened to me when I went outside to take a walk and all of a sudden I thought I was gonna drop. I was at work and had to lay down on the floor cause I felt like I was gonna pass out for some reason. Was so weird! The breathing is on and off too. But when I work out I never really noticed which thing I'm doing. It always seems like when I am doing cardio, (sometimes) and the leg machines. But it is never consistant. Even sometimes when I take a walk I will be short of breath. Also, sometimes it happens when I am laying down. So weird. It is never consistant. I will also wake up at night and have shortness of breath and my lung tests came out perfect. So weird. I guess I will just see if I can set up a test to see if I have it, but it is hard to diagnose I read. I do try to stay away from sodium. I do love salty chips though. lol But I try to watch my weight and stay fit. I crave the salty chips occasionally and only sweets at that time of the month. I do get anxiety sometimes when I am short of breath. That's when I sit in my massage chair to relax my muscles, and then I can get a full breath. Cause that is what happens, It's not like I can't breath, I just can't get a full breath. Only at times like when I am having a bad day and just want to walk, I feel like I am out of breath.So odd when my lungs are normal. I have had so many breathing tests and docs look at me like, "hmm, what next?"
Beeba said:
I too have had the gamut of heart tests. All normal. I don't categorize mine as POTS but just dysautonomia. Pots indicates your blood pressure drops by 30 points upon standing. Of course nothing with me exactly fits that box!! Lol my symptoms if it clarifies are exercise intolerance, mostly legs, after eating my heart rate and palpitations increase like crazy, cold feet (probably would be called raynauds) a definite "just strange feeling" upon waking. Most people with pots have low bp mine is very high and most meds will make symptoms worse even including making pressure higher. If you want a more distinct diagnosis you want to request a tilt table test. If you take any bp meds you need to discuss stopping for a few days before test as being on them can mask accurate results. First if you pass out there will be no misinterpretation but if you don't and just have an extremely unpleasant experience you want it reviewed by a cardioelectrophysiologist. What they see can be different than how other cardiologist read it. Just to give you some hope - I went from being bed ridden for the most part to doing 14 hour days in Disney world - literally in 48 hours difference. Now not everything is perfect but the correct meds and the many things you can do at home can strongly improve your health and feeling better. I too always liked weight lifting over other exercise - I can still do my arms but legs are a big no no. Too much blood leaves my head and my heart. Even loading up on groceries and doing my steps to bring them in can set me off. Can you describe your breathing issues? Is it like you just ran and can't catch your breathe? Or are you actually having trouble breathing. What I experience would feel (and been misdiagnosed) as an anxiety attack but my mind is blank and I have no "scary" thoughts just sitting and watching friends and mind a blank. Of course your heart beating at rest at around 110 can certainly cause anxiety. But figuring out what is coming first helps not to have that panic feeling. I certainly don't like it but I don't freak anymore now that I am aware of the physical and not the losing my mind feeling. Also youtube pots - there are some great videos - including one where a girl actually make it happen doing lunges. She is young and laughing with a friend and you think it ain't gonna happen then out she goes. Also videos explaining it. Let me know if anything looks familiar. I never passed out so I always dismissed it - but looking back I have always done things to prevent it. After a hot shower I always say for 5 minutes. I talk and if I get light headed I just sat. When I stand still too long I alternate weight on my feet - these were actually all unconscious coping skills. After being in the sun - I come home and just guzzle a coke - salt and sugar!! Ahhhhhh!! Do you crave salty foods or sweets? What we crave is usually more of what our body needs.
This is such a great thread! Thank you. Until this time last year I was running 10km every Sunday & ran 4km twice or three times a week as well. I did my garden with gusto & worked lots. Last time I did my garden I ended up in ED the next day (CT showed nothing). So, I walk for as long as I can - & that is not long 40mins if that. At least I can do that! Most of my muscle is depleted. Dysautonomia is frustratin, because it is not explainable to cardiologist or GP!
Before I had surgery I had a lot of trouble working out. I would get so fatigued I'd be nearly bedridden for days after exercising. Plus my arms would get so weak it would cause me problems. After surgery I have no real issues exercising provided I don't lift heavy weights overhead. If I do I get spasms in my neck.
I am the same way. I can usually walk long periods. But sometimes I can't. I just don't get it! I have not been diagnosed with anything yet. But it all sounds like I might have it. I don't have the rapid heart rate though. Just tire easily and the respiratory issues. I guess I will suggest the test to my doctor. But a tilt table really does not make me happy. I used to go be able to do spinning rides too and when I tried, oh boy was I dizzy. I was done for the rest of the day. :(
Sonj said:
This is such a great thread! Thank you. Until this time last year I was running 10km every Sunday & ran 4km twice or three times a week as well. I did my garden with gusto & worked lots. Last time I did my garden I ended up in ED the next day (CT showed nothing). So, I walk for as long as I can - & that is not long 40mins if that. At least I can do that! Most of my muscle is depleted. Dysautonomia is frustratin, because it is not explainable to cardiologist or GP!
The thought of surgery scares the crap out of me. I hope I never need it but I just don't know if things progress and some day I might. The way things are changing, who knows. It is just so weird how one day you can do something, then all of a sudden, you just can't. Sometimes I just want to sit in my room and cry. How can you be so normal one day and then the next day, you're just not?! I just want to scream!
Anglyn said:
Before I had surgery I had a lot of trouble working out. I would get so fatigued I'd be nearly bedridden for days after exercising. Plus my arms would get so weak it would cause me problems. After surgery I have no real issues exercising provided I don't lift heavy weights overhead. If I do I get spasms in my neck.