Twitching In Legs After Walking

[Kitkat33]

Hi All,

I am a new member in the forum but have been living with POTS for a number of years. I was diagnosed back in 2003. Recently, I have been very symptomatic (excessive fatigue, heard palpitation, increased heard rate, sort of breath, etc.) and am nervous that there is another condition going on as well as POTS. I have seen a number of doctors and am going to continue to go but, nobody has discovered any diagnosis other than POTS with no underlying causes.

One of my symptoms that I wanted to ask about and see if it is fairly common is muscle twitching after walking. This happened to me years ago but, has started up again recently. After going on about a .5 mile or less walk I have twitching that I can feel throughout my leg muscles. It is happening fairly deep in my leg muscles so, I cannot see if with my eyes but, I can feel it for a number of minutes after walking.

So, just curious if this is a common symptom for some on this forum?

thanks,

Kate

[looneymom]

The twitching is a symptom of POTS. When my son was walking it would start while he was walking. Our cardiologist called them orthostatic tremors. If you get on the POTS facebook group, this symptom is mentioned in many post. However, it seems to be more common with teenagers that have POTS. From what I have read it is a symptom that comes and goes.

[Kitkat33]

Looneymom, Thanks for the input. I did have this symptom more often when I was first diagnosed at 21. Now I am 33 and it seems to be starting again. Glad to hear I am not the only one.

Kate

[SarahA33]

Hi Kate,

Welcome to the Forum! I'm sorry that your doctor's haven't been able to come up with some answers for you, I'm sure that's very frustrating. Looneymom brought up a good idea, even though its common in teens, it couldn't hurt to maybe research some articles and bring them with you and mention it when you see your POTS doc at the next. appt.

I wanted to let you know that on DINETs main website we have a section, its a physician list, http://www.dinet.org/index.php/physician-list Here you can type in city/state you live closest to or willing to travel to to find a doctor who specializes in dysautonomia. I wish you the best of luck

Be well,

Sarah

[Claired]

I'm 19 and I get that all the time after walking once I stop walking. Probably blood vessels/pooling, as the other members said, if POTS related.

[SarahA33]

Hi Kate, I just wanted to throw this in there, for everybody who reads this post... It could very well be directly related to your POTS, but since none of us are doctors, that's why we stress Talking your symptoms over with your physician is the best idea, as not everything can be "chalked" up to POTS.

Just a few things I was thinking of today..

I. Have you had your calcium levels checked recently? hypercalcemia (high levels of calcium) can cause muscle twitches, and also Potassium, lower levels of Potassium can cause muscle cramping in legs...both can be checked by just a simple blood test, (BMP) Basic Metabolic Panel. My doctor usually adds on a simple Magnesium lab also

2. Have you tried applying heat to your legs? I know when I used to cheer competitively in college, I would get horrible muscle spasms. Ice made them worse in my case, but a really good heating pad made a world of difference. Everyone is different, so Ice may work for you

I hope you are feeling better today,

Sarah

[Chaos]

Interesting.

I have had this happen frequently in the past. Never associated it with POTS but makes sense that it could be related. Can't remember when it started relative to POTS though.

[Kitkat33]

Thank you all for your thoughts and input. I will need to check out the doctor's list. I have been dealing with pots and fatigue etc. for years but have had a really tough time these past 6 months. I am tired with no energy every day and with a number of random aches and pains to include new problems with bladder discomfort and constant back aches... just trying to feel better to improve my quality of life. I have seen a number of doctors but none specialize in Dysautonomia and the consensus with most of the doctors I have seen is that I am ok, and just need to decrease my anxiety and change my life style.

I have had my calcium and potassium and magnesium tested. My potassium on two test was low, around 3.2 but on another it was fine, 3.8 so my doctor (primary care) concluded no additional test were needed in that area. I was told my magnesium and calcium levels were ok but, am not sure regarding what exactly the numbers were.

I went to a cardiologist who did an echo and ordered a stress test that I am going to do next week. The Echo looked good. Although my heart rate laying down was in the 100s and has been much higher when standing (130 +). My blood pressure at my most recent appointment increased quite a bit and was 160/102, I have had blood pressure on occasions around 140/90 but never as high as some recent readings.

The cardiologist also ordered some test to check out my adrenal glands which potentially could be the cause of my increased symptoms if anything is found there. I know a number of similar test were run by doctors I saw back in 2003 but, am hoping maybe some answers are found now.

I really have been trying to ignore this condition for too long and would really like to find some answers if any can be found. I don't want to also assume everything is due to POTS when maybe something else is causing my recent problems but as of yet, nothing has been found.

Thanks again!

[SarahA33]

Best of luck to you Kate!

[fitnesskelly]

Do you take magnesium? My legs start cramping if I don't take plenty of magnesium. And my husband gets leg twitching if he misses a day of magnesium. I've read that the tests don't often really tell if there's a deficiency (in other words, you can test in range, but still have a deficiency).

[gjensen]

It sounds a bit like some sympathetic over activity. I used to get a lot of this. Not tremors, but muscle twitching. Particularly, after prolonged periods of stimulation.

[Lisakay]

Hi.. I know this post is a year old.. But I'm a 48 year old female who was just diagnosed with pots like a week or two ago  after having a bad kidney infection and surgery and I have the exact same symptoms.. the shortness of breath ..fatigue.. racing heart... twitching muscles and I'm kind of a geek, so I do a lot of research looking at scientific papers... I do have a degree in medical billing and medical coding so I can understand about half of these scientific research papers LOL and I found an interesting article about mitochondrial cytopathies... it's a disease and it mostly strikes people in childhood but it does strike a lot of adults and it's usually a little less severe when it strikes in adults and it usually flares up at times of stress and a lot of the symptoms people are talking about on this forum like the drooping eyelids, the shortness of breath, fatigue constipation or diarrhea .... just a whole host of General symptoms and I'm not talking about being winded I'm talking about air hunger and a whole host of other symptoms  that are actually symptoms that can go with this condition. I'm not sure how to go about getting tested for this I think it's a geneticist that would do this because it's actually like a strand of your DNA or your rdna that's  missing at a certain place in your body which would give you whatever symptom you get... but it's interesting and worth looking into it if you feel like it. I think I did read that vitamin B12 can help some people if it was an adult onset and if that's the condition.. also it never hurts to be tested to see if you have vitamin deficiency...