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Amy

Unbearable leg and feet cramps

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Does anyone else get severe leg cramps and feet cramps? I do not know what to do as I cannot sleep. I don't about fatigue from pots because I am fatigued all the time because of true sleep depervation. Does anyone have any suggestions. I feel the need to go to the doctor but fear after what I have been reading from all of you that I won't get any response. I have just newly been diagnosed with this and do not know if my cardiologist it want to deal with the symptoms. My GP, I love him but he already told me he has never even heard of Pots, my oncologist has also never heard of pots. These are the two people I really rely on to keep me going and able to work. I am scared for my future for the first time in my life.

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Amy,

Yes, the POTS is very hard when you don't have a doc who understands. However, any compassionate doc understands pain. I would encourage you to seek out some medication for this pain.

I too get these cramps - actually I had them just last night. I have a variety of pain meds I use depending on the type and severity of the pain. At first, I was unwilling to take meds and valiantly put up with the pain. I've concluded that it's not valiant - it's stupid. If it destroys your sleep then you are just going to increase many of your other symptoms.

I also take a supplement called ZMA - it's a zinc, magnesium, B6 supp that helps with sleep and the magnesium is supposed to help with muscle pain. It does help my sleep a lot.

Hope you can find one of your docs to help with this.

Roselover

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Amy,

I have had this for years!!!! Quinine helps alot!!!!! You can get a prescription, or drink tonic water, Sugar free this is quinine water. It is often referred to as restless leg syndrome. Miriam

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Hi Amy,

I am really sorry you are having horrible muscle cramps. it is sooooo painful. i think i mentioned in like my intro post that i get those. no fun! :D I'll be praying for you. if your cardiologist is anything like mine, don't ask him/her (just to save yourself being treated rudely). I think it is worth askiing your gp. maybe there's something they can give you. i know sometimes i'll get it and be up until 4am (it goes from my belly button to my toes) and only becomes tolerable a few hours after taking tylenol if it does. So, i feel for you, but yours sounds really horrible :( i'm sorry :(

Well, I do know one thing: (and i'm knocking on wood as i'm saying this) i haven't had bad muscle cramps - i've barely had any - since i got an iv. and i had been having cramps for like months before the iv. maybe a coincidence. i don't know.

so, maybe drink lots of gatorade. the mango flavor is the flavor that doesn't make me feel like i'm going to puke.

other than that, i found stretching helps, but when you're beyond exhausted that's kind of a pain..but you can do it slowly and gradually. warmth is good, but when i take a warmish bath then my pots acts up bad and it's not worth it.

but cramping is horrible because it feels like the nerves went wacko and got struck by lightning and it's AWFUL! i'm sooooooooooooo sorry!

one of your doctors should care. if they don't, maybe look into a new doctor. you could always fess up to your gp and say that you sometimes don't want to say everything that's physically bothering you in fear of not being able to be helped or being not taken seriously. of course, my cardiologist thought that was tmi (too much info), but your gp shouldn't - cause that's his/her job..to take care of all of you. and if he/she can't help, he/she should send u to someone who can.

if no doctors can help (i do believe tho that someone will be able to help this) you can try acupuncture and all that stuff. many people swear by it. so, your hope is not up. it may seem like it, especially when you have another symptom piled on to the already numerous conditions you are dealing with, and that is completely (more than) understandable.

you're in my prayers.

good luck.

i hope you find some relief. have you considered taking some tylenol a while before you go to bed so it doesn't get too bad. also, fyi: i was given anti nausea medicine for my whole vomiting spell. one time when i took it i was also starting to get horrible that time of the month cramps but then that medicine completely helped them. one of my friends said it made sense...i don't know, but maybe there is some medicine that can help u. the only prob is that that medicine zonks you out - unless u take a fourth of the pill.

hugs, love, and prayers,

sun

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Tonic water and quinine are great for the cramps, as Miriam said. I hated the taste of it, but you don't have to drink very much for it to help. I have horrible cramps in my feet and calves and constant muscle twitches. Good luck, morgan

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Thanks everyone. I have taken Quinine before and found no relief. I get these cramps off and on all night long. I do take a bath to stop the cramping but, it comes right back later. What I think happens is everytime I move when I am asleep that it triggers cramping and that is why I am up all night. Just as soon as I get back to sleep here comes another one. It is very frustrating when you are exhausted to just get back to sleep or maybe just back to bed and then BAM! Also, I don't about the rest of you, but I jump up as a reation - and then really pay for that movement with severe dizzness from having moved so quickly.

I am sure it will get better, I am just having a bad time and finding myself short with my family and not having a good time.

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So sorry Amy, massage might help. I can't take baths, but sometimes I just soak my legs in hot water and then have the old hubs give them a rub for me. Sometimes just nothing works, so hoping you can find something! morgan

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Guest tearose

I'm not sure if this is the same as you Amy. I just recently for the first time, began to have excruciating pain in both knees. I can't lift them without help. I feel like they were crushed. My ankles are slightly achy but nothing as painful as the knees. This is a very new symptom of who knows what.

I guess it could be arthritis but I have never had that before. I just don't want to hear about possible MS again. My MRI last year was fine.

Anyway, I don't have a clue what your symptoms could be and this is new to me.

I have found that warm heat is soothing and elevation helps.

Let me know how things progress for you.

take care, tearose

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i would suggest triing taking a magniesium suppliment and some complete b vitamin.

i just found a group of books that have shed alot of light on how to deal with my pain. they are writen by John A. Senneff, call "Numb Toes And Aching Soles", "Numb Toes And Other Woes" and "Nutrients For Neuropathy". they have been helpful in pointing out things i haven't triied yet.

chronic pain has been a real challenge. are you in an area that has a pain mgt. clinic? that would be the place to start.

best of luck,

blackwolf

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Amy, sorry you are having this pain and I know that the poorer the sleep, the worse the next day will be. I had muscle pain in my calves for several years and the doctor was concerned enough to do ultrasound for clots (normal thankfully). Also, my potassium levels have always been ok. Last year a nutritionist told me to try magnesium supplements and after a few days I stopped having the pain.

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