Pains in lower legs

[calypso]

I am so sure you POTS veterans are sick of hearing the "is this because of POTS" question, but this is a new one on me. I have been getting deep, aching pains in my chins, about a few inches under my knees and toward the outer side -- right outside of where the shinbones are. I get them when sitting, standing, etc. -- doesn't seem to matter what position I am in. I don't know if it's a POTS thing from maybe the blood vessels in the legs trying to push blood back upward to the heart. I am hoping that's all it is.

I am getting so frustrated because I was really hoping that in the last few months I would start to make a little bit of a recovery from this illness. I figured being postpartum had to be making things worse. But I am getting no better. I am still losing weight and have literally no muscle mass or tissue left to protect my bones. I can't even sit in a hard chair anymore because my butt literally hurts from the pressure. I still can't breathe normally and feel like I am always struggling to take a deep breath, and like I have forgotten how to breathe.

I hate being whining so much, yet I feel like I have to every now and then! The only thing that has made me feel better in the last nine months is yoga. And the improvement is very small, but still an improvement. I am trying so hard to be patient and optimistic, but as every day goes by and I am not recovering, I feel resentful. Thank god I have my baby girl and a great husband to support me and cheer me up.

What's really horrible is that my mom is slowly dying of liver complications from being an alcoholic, and in the next few months I will probably have to be traveling back and forth from Wisconsin to Ohio to help take care of her. I am so angry that she will not stop drinking for more than a couple weeks at a time -- especially since I am struggling just to breathe and stand up and walk around when I have done nothing to destroy myself healthwise. I just buried my father not even two years ago after caring for him during his seven-year struggle with diabetes complications, and now my other parent is on her way. I haven't even hit 30 yet, for crying out loud!

OK, I think I feel a little better now.

Amy

[ramakentesh]

how long have you had full blown pots? I was worse late last year and have gradually over many months improved - still no where near normal, but i getting there slowly. I lost a lot of weight and was on a high high rice diet to try and out some back on - slowly but surely the betablockers and rice helped me avoid adrenaline burning the crap out of my fat stores.

My advise is that you will eventually improve - it took me a full seven months before i noticed an improvement - but it will come.

I do get a dull ache in my shins - like they are hollow or minicramping - its very strange. I took a multivite once and they tingled - in my imagination it was like they lacked something that the vitamins restored and i could feel them recharging - but the aches were back again a week later.

Also if i swing my arm around quickly it aches with mini-cramps.

[Ling]

My pain that I experience is apparently due to the Fibrom... I have. Some days I wish I could stand on my head my feet and hands irritate me so much. I would like to mention something to you. My dad has had two heart bypasses (early 30’s) and his complaint at the doctor was "I have a sharp pain under my chin." Just have it checked out and don’t worry. I am having a very hard time at the moment but what can you do but accept and go on. I have been underweight my whole life. I am now at a normal weight but only got there thanks to the Florinef I use to take. I think my body must do what it wants I cant do anything about it. I don’t have much advice, we can actually do nothing about it. But don’t give up and I recon you halfway there.

Thinking of you!

[Gena]

I can definitely relate to your shin pain problems. I just came down with these symtpoms about 2 months ago, so I have a long road ahead to recovery I'm sure. But I have had pain in and around my shins for several years, mostly after being on my feet for a while. I am also underweight and have lost 5 more pounds. I eat a lot and my body burns it off so fast. It's frustrating

And I know exactly what you mean about the breathing!! I didn't know anyone else felt that way too. I told my doctor that some days it's like my body has forgotten how to breathe. He looked at me like I was nuts! I have to force myself to breathe in and out and it doesn't feel natural at all. I have this breathing problem for short periods on a daily basiss, but I feel this way for many hours after an episode of tachycardia. It seems like the more I focus on it, the worse it gets.

However, when I do Yoga, somehow I forget all about the breathing problems and my body gets back in sync for a little while. It's really amazing.

I am so sorry to hear about your mom and your dad. Those kinds of stressors really take a lot out of a person. I've gone through some similar situations with my own family. I'm only 36 and I feel like I've been through enough stress for several lifetimes! Stay focused on the positive things as much as possible so your body can heal. God bless.

[morgan617]

so sorry about what's going on! i have a lot of pain in my legs, but's more of a cramping behind my knees and in my calves. it is so painful, and my muscles twitch constantly. it sounds like you have shin splints without the benefit of running to get them. about your mom. my mom had 3 open heart surgeries and would never quit smoking. i finally just had to distance myself from her. i knew i couldn't help her and she certainly didn't want to help herself. i know how hard that is, but you didn't cause your mom to drink any more than i caused my mom to smoke, and i finally realized there were just things i had to take care of for myself. like my own family. i guess that will sound harsh to many people, but no one on this site asked to be sick and we would do anything not to be sick. it is so frustrating to me to watch people destroy their health when i would give anything to have my health. i know how hard it is to watch someone you love destroying their lives, especially a parent or a child, but don't destroy what's left of your health trying to take care of something that can't be fixed. you won't be a bad daughter, just a sick one. i wouldn't be saying this if i hadn't gone through it myself. i used up so much energy i didn't have for so long, to no avail. you and your mom will be in my prayers. morgan

[morgan617]

btw, that breathing thing drives me crazy! my pcp said it was sighing hyperventilation caused by anxiety, so i said well, why do i mostly only get it when i'm asleep and wake up feeling like i'm not breathing? no answer for that. but i have actually gotten sore ribs from it. bummer. morgan

[ethansmom]

Amy,

I just wanted to lend a little support to you, it sounds like you are going through so much right now. Keep your hopes high that you will continue to improve. Ethan is almost 2 and I only feel that I've been stable for the past 6-8 months- the first year after his birth was very shaky at times, it was as if my body couldn't figure out if was supposed to be pregant or not...the first few months postpartum I felt much better than the following 6 months. I am also sorry to hear about your mom as well- it surely seems that you are young to be dealing with ill parents already, and to have lost one of them so soon. My heart goes out to you

I hope things start to look up soon...they have a way of taking us by surprise. Give that baby girl a big hug!!

[MomtoGiuliana]

Calypso

I am so so sorry for all that you are facing right now. I can relate to the breathing challenges--I have felt that way when my POTS has flared. Also, I have found yoga to be quite beneficial for whatever reason. I have not had much pain like the pain you are describing, just weird tingly feelings in my skin and that kind of thing.

I didn't really feel "well" postpartum til after a year had passed, so it may still take some time for you too. I found the first year of "recovery" to be very very slow and to take unexpected twists and turns with symptoms--it was not a smooth progressive improvement.

And I did not have the stress of an ill parent, much less a recent loss of a parent, to deal with. That does affect your health, to have such significant stress in your life.

I am glad you are looking into other causes for some of your symptoms, it may be that you have something else going on too. When was the last time your thyroid was checked--I know you said it has been checked--but changes can occur fast with autoimmune thyroiditis--if only the TSH was checked, perhaps ask for a full panel and also a check for antibodies against the thyroid.

My thoughts are with you as you care for your mom, too.

Take care. Better days ARE ahead, I believe.

Katherine

[calypso]

Katherine,

I was told by three different doctors that TSH would pick up any thyroid abnormalities. However, I have heard from a couple people either on this board or the Preeclampsia Foundation board that they had normal TSH levels but antibodies, then I have heard of others whose doctors say they treat them based on symptoms. So if you have hyperthyroid symptoms, that's enough reason to treat it. But then I also learned that they're treated with beta blockers, and I already have been taking those for eight months. I did just stop taking them this week to basically see how I could function without them because despite all of this horror with the illness, I want another baby in the next couple years ... and I would have to be med-free.

So anyway. I will probably have to go back on the beta blocker because my heart rate refuses to stay under 100 when standing. It's better than it was when first sick but still 100-115. I really worry about developing cardiomyopathy or an overtoned left ventricle because of all of the extra work my heart is doing, so I will probably go back on a tiny dose of metoprolol.

Thanks, everyone, for the vote of confidence that I will improve. It keeps me hopeful.

Did you breathing thing happen all the time, or was it just when standing, or what? Mine is absolutely constant -- it has been there since day 1 and never gets much better, except when I lie flat. Then I breathe at about 75% instead of what I feel is like 50-60% capacity.

Amy

[MomtoGiuliana]

The controversy over TSH never ends, it seems! Most doctors use it alone to make a decision about dosage. However, many patients and more doctors now believe that the entire panel needs to be reviewed as well as the antibody test(s).

I'm not an expert on this by any means, but I am pretty sure your heart rate needs to be pretty consistently in the 120 bpm+ range to develop cardiomyopathy. It does sound though that with a standing rate of 110-115 bpm that is consistent, going back on a small dose of BB makes sense. What is your heartrate when sitting or lying down, just out of curiousity?

I noticed the breathing thing most when feeling overheated or after eating. No connection to standing for me. It felt like my lungs were filled with glue and breathing was a bit of a chore.

My main symptom now are the darn PVCs and flutters, and tachycardia at times. At times my heart rate will be in the 80s standing, other times over 100. When I was first diagnosed it was consistently 120-160 standing! So, it has been a great improvement. Like I said tho, it definitely was a year postpartum before I got to that point.

Katherine

[calypso]

Katherine

That's so great you are able to be med-free! I am jealous! When I am sitting, my heart rate seems to stay in the 60s-90 range, and when lying down is rarely over 75. But before POTS I am sure my heart rate rarely broke low 80s because I, being overly sensitive to that kind of stuff, would have noticed. So this is a big change for me to have a heart rate this high.

So what did your cardiologist or doc say about cardiomyopathy? If the heart rate is consistently in the low 100s when you stand, is that enough to cause damage? I have heard conflicting info on this subject. I figure if I am standing or walking around at least a third or half of the day, that this would be inevitable after a couple years.

Amy

[Merrill]

Amy, I know you addressed your question to Katherine--but would you mind if I threw my 2 cents in? My POTS was diagnosed by a cardiologist...I had a whole battery of cardiac tests to rule out a bunch of problems before beginning autonomic nervous system testing. My resting heart rate when I went for my stress-echocardiogram was 148; it was also 148 when they strapped on a holter monitor weeks earlier. My heart rate has ALWAYS been high--at least since I was a teenager, anyway... and I'm nearing 43. (In the past, doctors said things to me like "does your heart always beat this fast" and I'd say "yes" and they'd move on. Next question? I guess it hasn't bothered me too much in the past--you accept what you're used to.

ANYWAY, I don't want to make this too long... but because the structure of my heart is OK, the cardiologist assured me that I oughtn't worry about the kind of "inevitable damage" you describe. The heart is responding properly to the lack of venous constriction in my legs. It's not dangerous (tho it can certainly be uncomfortable at times! And yes, I have tons of irregular beats too...) I suppose I'll be monitored a bit more closely now that we know why my body is doing what it's doing...but it's certainly not a given that I'll suffer heart damage as a result of POTs!

The salt, fluid, and high compression hose have brought the rate down to probably between 105 and 130 most of the time, and that's fine with me...

Take care,

Merrill

[calypso]

Wow, Merrill. That's a fast heart! I guess I didn't realize your RESTING rate was that fast. I feel very reassured that you are living proof that a heart can be healthy even with a rate that high. The only thing I wonder about is if it's any different for someone like me, whose heart rate was never that high until last year and POTS developed. If my body is used to a normal heart rate, it seems as though it has to work so much harder to compensate with the high heart rate. Plus I have borderline high blood pressure to worry about.

I guess I can't really worry about it. I am going to probably start taking a tiny dose of the beta blocker until I plan to get pregnant, then I will just have to live for 9 months without it somehow or another.

Thanks for your advice!

Amy

[MomtoGiuliana]

Amy--regarding high heart rate, I doubt that the fact that you have developed POTS now as opposed to when you were a teenager would make you more susceptible to heart damage--unless, like Merrill said, you have some kind of heart structure problem. That said, it would be reassuring too to talk to a cardiologist about this question. Like Merrill, I have never had a doctor express concern about my heart rate being over 100 when sitting or 140-160 standing--and I saw many doctors during pregnancy and post partum (post partum is when it was regularly 140-160 standing). Even when my POTS flared at age 30--probably in response to my developing Hashimoto's, and my heart rate was around 90 to 120 night and day, no doctor expressed any concern about it as far as my long term health. Regarding heart rate being in the low 100's, my understanding from talking to both my endocrinologist and my POTS specialist is that this is not dangerous or going to cause long-term damage in an otherwise healthy heart.

But--I understand! This stuff worries me too--and b/c I still have a lot of tachycardia I am thinking about going back on a small dose of bb.

I think the high blood pressure may be a higher concern and more of a reason to take a low dose beta blocker. Again, talk to your doctor about that. I am in the same boat now with that. I used to have LOW blood pressure. Now I have borderline high blood pressure--my hope is that I will go back to my pre-preg state, but that may not occur.

Take care, Katherine

[Merrill]

Amy, I spoke with a high-risk cardiologist as I was undergoing (unsuccessful) fertility treatments, because I too was curious about all the "what-ifs" ... and knowing that heart rate increases with pregnancy anyway. And I wondered about beta-blockers etc... She said that if it was necessary, we could consider beta blockers AFTER the first trimester ... but that it was better if I could avoid. I know many people do take them successfully throughout pregnancy (or at least during the last two trimesters). But in any event, my regular cardiologist said he wouldn't give me beta blockers without also putting me on midodrine; he said that in my case, given what he knows about me and my particular physiology, they would make me feel worse.

Just to clarify--my hr does go down to the 60s and 70s during sleep... resting as discussed below meant lying down for awhile ... and like I said, the non-med treatments and trying hard to keep stress at bay or redirect my focus with meditation-type techniques when things get icky help a lot to keep my hr closer to 110-120 than 150!

I should also mention that there have been some years in my life when I think my rate was slower and I was healthier overall. In my late 30s, I gained 40 pounds without trying (and I lost about 20 also without trying when my pots got bad again about a year and a half ago). The heart is a very strong and flexible muscle... My simple advice is to try not to worry about it or think about it too much if you can.

take care,

m

[morgan617]

my bp and pulse used to be way high, now they are in the pits! what a crazy illness. my doc said he doesn't have to worry about a stroke anymore, just me passing out and getting a head injury! it's one extreme to the other. i have an echocardiogram about every two years. my heart hasn't changed much. and i'm going to be 50. i have been sick a long time. so if the structure is okay, i agree with others, you don't need to worry to about it. it's just annoying and frustrating. i decided since my heart rate has dropped from the 100's to the 60-80's at rest, i would start to exercise. well, am going one minute and heart rate goes to 130. all i'm doing is going up stairs. go figure. maybe will get better with time and conditioning. morgan

[calypso]

To make sure I have a structurally normal heart, is an echo sufficient, or do I have to have a stress EKG or stress echo? My cardiologist says i don't need a stress test, but I always am in favor of thorough testing when the answers aren't clear and the illness is something like POTS that isn't very well understood. I have also had a Holter and an event monitor, but no actual stress-type test.

What tests did you all have cardiac-wise?

Amy

[Merrill]

Amy, it's a good question, and you might want to start a separate strand with that title... (I'll post my answer there... unless you don't, in which case I'll come back and post here! )

[MomtoGiuliana]

Others should chime in too on this. I THINK an echo is sufficient. That would identify valve problems, and size or shape problems. I've had several of them over the years and everything has always be 100% normal. I've never had a stress test--but I don't think that would id structural problems? Keep in mind that invasive tests may have unnecessary risks associated with them and may not be recommended for that reason.

I agree with Merrill--start a new thread on this!