Is this caused by POTS or something else?

[Guest Julia59]

Here I am with another complaint----------

But I am a bit worried. Lately I have been pushing myself a little harder then usual. This is what helped with my decision to go for the disability---atleast for a couple of years. It has been such a hard decision---

Here's what brought me to this point;

I guess you can say this set back started after the John Kerry/John Edwards event.

Maybe the 5 hours in the heat was too much. I made it through---but it was tough---real tough. I had a lot of help with Ice---water---and the only corner of shade around. After the event---i'd say about two weeks or so I noticed more fatigue then my usual. A real dragging fatigue----legs don't want to move---and feeling on the verge of collapse. I have been recovering after resting in between, but now the resting doesn't seem to help as much as it used to.

Then I helped a friend who came to town for minor surgery at MCO so she could be where her POTS doctor was. It' not normally a big deal at all for me since I am so close to the hospital. It was hot that week and I noticed that even a couple of minutes in the heat was a killer. Back to dragging again. The fatigue kept getting more and more profound.

I was getting better at the handling errands like to grocery store and things like that for quite a while, but now can barely handle picking up a few items.

Then I just continued to go down hill from there. One day at K-mart I was waiting in line and I was so weak. I kept calm and continued to observe myself decline to a near passing out stage. Note that I am diagnosed with POTS---but have never passed out. I only came close a few times in the beginning phase of the illness, then improved in certain areas but not completely.

I did have a kind of routine helping my friend---and in actuality she helped me more then I helped her. By helping her on and every day basis, I found that working a job full time would not work out at all---and probably not part time eaither. I just have too many things going on with my health that need to be straightned out. Plus i'm handling some other things I can't really go into. Let's just say one day i'm getting a raise and an excellent job review in Dec. 2000 just after my health started to crash, but my employer was not aware until a couple months later after I missed a lot of time. Then In March during the multipal blood tests---and urine tests----I had a lead urine reading of 30.6 when the guideline is 8.0---almost four times the limit. Then In April the following month I have no job.

I think you can see I have a lot on my hands. A second lead test was done---but it was a different one---and it was normal. A third should have been done---I'm just realizing this now.

Anyway........

After my trip to New York---or even beforeI have had condsiderably more problems with my cervical spine, and a lot more pain in the back of my hed, shoulders , neck and upper back as I had told all of you about before. I simply feel I can't even sit up too long from all of this. I can't believe i'm saying this, but sitting is even a strain. I do it though---I stand, walk, still try to clean my house with help, and run errands. I also try to help my parents out from time to time.

Just lately I have found that all of this is becoming much harder. In the last three days or so I have found my legs to be very wobbly and weak. This morning I noticed that I had tremors in boths hands while I was holding something---but I can't remember what I was holding. I have had trouble articulating my hands doing small things----even handling larger things.

The biggest thing is the fatigue. I feel weak as a kitten.

Here's the thing that brought me to posting. I have tried to pace myself getting ready for a a small party my husband and I had last night. Wrongly, I decided I wanted our bedroom painted. My husband was glad to do it, but I went to get the paint, and the border, and I had to do more around the house because I couldn't expect him to do everything. I found that I had to walk on all fours going up my basement steps. I had to rest in between, and just didn't recover and I just kept going.

My son helped my the whole day yesterday before the party. All I had to do was dust, and make a couple of desserts and make one dish. Usually not a big deal, but it seemed to take me all day. I did have to go to the store and pick up Soda, and a couple of other things. I could barely get around the store. When I got home I was at the winey stage-----just totally wiped out. Anyway, at the party my husband did all the rest of the work----after working all day. I felt so bad, but what could I do. Last night I felt so bad that I was actually wound up if that makes nay sense. I was pacing and anxious because I knew something wasn't right. I was losing my balance----falling backwards, wobble legs---and a real bad pre-sync spell.

I feel a little better today fatigue wise, but I have just sat around. I have done nothing but watch TV or read. I still have the wobbly legs, balance issues, and weakness. I still notice tremors in my heands when I use them----even as I type this.

I better get to the point---huh----

Is this normal for POTS----or do you think it's more connected to my upper spine/brain stem issues.----Or is the POTS caoused from those issues...........

I'm very confused-------and worried about my legs. Sorry for rambling---but had to get it off my chest.

Thanks for reading.

Julie :0)

[calypso]

Julie,

My best answer is I don't know if your weakness and wobbling are due to POTS or chiari. But I will share my experience.

When I first started to get sick, I went through a three-month period when I would have strange weakness, where like you, I would have trouble picking even little things up, like coffee cups, and dropping things and having trouble with my hand movements (my handwriting changed to smaller letters, I had trouble with buttoning shirts, etc.). This lasted consistently for these three months; these were not spells. I seriously thought I had ALS at one point. I was also getting fasciculations - little muscle twitches - and was feeling so weak and tired.

During this process I lost a ton of weight and realized I was losing muscle mass, which seemed to be causing this "weakness."

I don't know if this is POTS or not, but it happened to me. Wish I could say I have recovered, but I can only say it has reached a plateau for me, and I have residual weakness and an inability to regain any muscle. But I do not "feel" as weak as I used to. Before I used to literally feel like I was dragging around a pile of bricks tied to each of my limbs. Now, when I go to pick up something heavy, I actually can't. So my perceived weakness that I had before has been replaced by real weakness. Does that make sense?

I don't know if this is the kind of info you're looking for, but thought I'd share.

Amy

[morgan617]

i have alot of tremors in my hands, especially if i try to lift or hold anything for any length of time. i get really bad muscles twitches in my legs and i have had my husband take my arm and just walk me out of a store and put me in the car to wait for him. i don't even say anything. he says he can just see me wilt and look like i'm going to collapse. i have such poor coordination in my hands it's not even funny. i have to proof read everything i type. so i guess, it must be part of the pots. i have never fainted either, i tried to explain how i feel to my doctor. i just told him i feel like if i don't sit or lie down, i will just fall down because my legs are going to crumple. is that how you feel? i am sorry you seem to be going through a really rough spot here. it sounds like you may have really overdone it and it just seems to take such a long time to recoup. hopefully you can take some time to just rest and take care of yourself. hope you feel better soon. no more parties for awhile girl! morgan

[Herdswoman]

Aw, Julia, quit painting the bedroom when you're exhausted will ya? You don't want people to think you're related to me, do you, lol? Eek!

Or is that where the party was? WOO HOO!

Seriously.......

I think we all have things like that........we know we have POTS, know we have limitations and we want to, strive to, be as active as possible. We all overdo and make bad choices for our health sometimes, because we constantly battle to balance the price we pay physically. Sometimes the price is higher than we expect, sometimes we don't care because the payoff is so great. Sometimes that sneaky, sneaky disease we have just is adding it all up behind our backs and then WHAMMO! POTS says "You owe me a full day - or two - in bed. OR ELSE!!!!!

So why is it that we are -really meaning I am- so reluctant to just suck it up and rest? Get the remote, the phone, a jug of water and go to bed?

I've had a few tremors (worse when tired) many, many brain fades (REALLY evident when pushing myself) and a lot of other symptoms when overtired. I really related to what you described as "the whiney phase" in the grocery store - whew! I'm not fit company for man nor beast when that happens. If I keep pushing, I'm sure to end up miserable, with more symptoms and then it's really hard to separate what's POTS from what's not.

What has worked for me is to rest, rest, rest.......until I wake up feeling good one morning. Then I start over, see if my symptoms have resolved and see what weirdness life has for me that day. If I've done my job completely - meaning rested and rehydrated well - then I'm normal. Or, as my husband would say, almost normal. And the balancing act starts all over again. BOTTOM LINE: If we don't take care of ourselves, no one else will either. And when we don't take care of ourselves, we don't have the quality of life we want and can't care for the people we love the way we want.

A big piece of this for me has been re-prioritizing. I quit work - and I've worked since I was 14. If the beds don't get made every day, that's OK. If the laundry piles up for a week, then it's a good thing we have plenty of underwear. We just thank God for big washing machines and that we have enough clothes in the closet to last. If the grass grows tall, I just don't cut it on "3", maybe I set the mower at "4" or in dire straits, "6." If the party is coming and the house is picked up, that enough. The food must be good and there must be enough chairs to go around. That's enough. The people, convesation and laughter will be great and that equals success. I really try to focus on the people I have in my home, second after that is the food. After all, that's what they'll remember.

If I've overdone for a consistent week or more - especially outdoors - I'll end up with asthma attacks and bronchitis. Bronchitis means a big ol' POTS flare. I will ONLY do that for a major, major payoff.......like right now. This past week I helped my daughter show her horse at the County Fair: dust, lifting, carrying, dust, stepping up into the horse trailer, dust, helping other kids in the 4H club, dust, set up practice sessions, work with her during fair and for weeks preceeding, heavy lifting of jumps and rails, dust, hard work hooking and unhooking the horse trailer, dust and more dust. But I watched her succeed beyond our wildest dreams. So I sit here, on steroids, waiting for the pulmonologist to open his office so I can have my antibiotics. This is worth every bit of physical price. I mean, where else will I be able to watch my daughter grow up?

[Ernie]

Hi Julia,

I am no expert but I think it is because you overdid it. I will probably take a few weeks of rest to get back to your baseline.

Ernie

[Guest veryblue]

sorry to hear that you overdid it...try to get some rest...it's strange cuz I can do tons of stuff and I never pay the price...I mean sometimes I play 3 softball games in a row and then stay up late and get up and go to work as a server the next morning...dont feel weak or anything...so sorry that I cant relate! That must really be hard! Hope to hear that you are up and walking soon!

[DawnA]

I get this if I overdue myself. My electrolytes seem to be totally out of wack. Rest, salt and fluids are what help me. But too much rest can make me worse.

Amy, your permanent weakness sound like more than POTS. Have you had an EMG. My first EMG was normal. I had another one by a different Dr. who was supposably better at it and it was abnormal...showing definite muscle disease. I was told the person performing it can make a difference and it definitely and art. Your muscle wasting definitely sound like muscle disease. I hope you can find a Dr to take this seriously.

Tomorrow I get my results back from a muscle biopsy. I was told it probably would not yield much information. Yaay another test that comes back normal! It would be nice to get some answers, but that may not happen.

Best Wishes,

dawn a

[blackwolf]

Dear Julie, Personally, I hit that same stage a lot lately. I know part of it is the heat and humidity. Our weather has been really wild, a few days like July, a few like April and then Mid Sept. suddenly shows up. Tonite is loud thunderstorms with rain and small hail(NOT mid Sept weather).I also have had a major family problem that I know has really kicked my symptoms into high gear. I pass a lot of my time by sewing child and lap quilts and crocheting. I find that my hands shake to much to do the fine work of thread crochet, but I can do larger threads or yarn or just quilt, or nothing at all. I even have trouble just holding a book or magizine sometimes. Even coming here and typing can be a major undertaking. Walking has become the process of using a cane on most days to the occasional shopping trip with a wheelchair or electric cart(supplied by the store). And, of course, there are those days that, no matter what I do, I just don't have the energy to do anything and start shaking almost immediately when I start moving. I was dx'd with orthostatic hypotension in March of 2000 and POTS just a few months ago. My cardio conciders them interchangable. I also recieve SSDI. Thank goodness for it. Enough rambling! Any way, just try to remember that you need more time to get things done. Rest when needed, and, not to be rude, but I agree with Herdswoman, if your guests wheren't going thru your room, who cares if it was done or not. We moved in March and still haven't finished painting and unpacking. Just one more note, even or my worst days, I still try to do some daily stretches, light weights(arms) and leg lifts over the side of the bed. It might take all day, but I get it done. Drink plenty of fluids, eat healthy snacks(vitamins and minerals help to) and DO NOT RUSH IT! I plan 1 project a week, yes ONE. Take it easy and just remember you are the one how knows when you have done enough.

Blackwolf

[Guest Julia59]

Yes, I'm thinking the heat has a lot to do with it...........Big time.

For some reason the heat has been more of a killer for me this year then the past two years.

Also, my gut motility is worse then ever-----or should I say bowel motility. I'm ready to jump off the bridge. I'm tired of feeling like there is a bowling ball inside of my---------well-----body...........

Senokot doesn't even work. I really can't handle much more of the gut motility issues. I have a wedding to go to---and important wedding. My niece is getting married--we're very close. My husbnad is singing Ave' Maria which is a hard song to sing---practicing every day-it's in italian...............My husband has a beautiful voice, but he doesn't have the time he used to to----so he's s bit out of practice.

I have a very nice dress---and I don't want to be miserable when I wear it.....

I am miserable almost every day with constant constipation/ I do not remember what it is like to be normal in that area any more.

I really think it has a lot to do with the brain stem pressure issues. Since I have had more pain and symptoms---I now have worse bowel motility. My fatigue has gotten a little better though. I was able to shop a little with my mother yesterday and not really pay for it like I usually do. I have been good and rested for a couple of days-----so I think I just need to listen to my body more.

So far I have tried Miralax, senokot, milk of magnesia------------MOM only partially owrks---miralax doesn't work at all---and senokot used to work---but now it doesn't work eaither. I just have a very sluggish colon. I could take more of the senokot---but then I don't want to become dependent. I'm always careful to rotate more natural methods with the stimulant type laxitives.

i was given reglan----but I am afraid of the trade off---all the side affects that I have read about don't sound too good for POTS. Especially since I have brain stem involvement.

Yesterday while shopping I dropped my purse on my shoulder---pulling at my neck a bit. Although I did OK in the fatigue department---I really pulled something when the purse fell. I felt it in the back of my head----how weird is that. Then I had a terrible headache and when I got home I couldn't hold my head up. WEll---I iced it----and took tylenol----I woke up this morning with only a dull headache. Look's like I escaped another mishap.............let's hope.....

God I wish I could get these guts to work----the have been bad since I was 10 or 12............sure am sick of it.

Julie :0)

[Merrill]

What about taking something like Colace regularly, say, twice a day? Just a thought. Hope you feel better soon,

m

[michiganjan]

Hi Julie,

Have you ever tried taking metamucil 2 times a day or even increasing it to 3 times a day. If you want to try it and never have, starting out once a day is advised and increasing gradually will cut down on possible effects of gas.

The thing that worked the best for me is something a coleorectal doc once told me. He said to eat one of the 2 high fiber cereals for breakfast. There are only two that I know about . . . Kelloggs All Bran with 13 grams solubable fiber and General Mills Fiber One with 14 grams. I think there is actually one out there with 15 grams of soluable fiber. If you can find that one, it is even better.

The doc told me that a person needs 25 grams of fiber every day. No one gets that much! Starting off one of the above cereals makes it possible to get there . . . you have to get the other 10 grams from foods the rest of the day. And even if you don't you will be getting lots more fiber than you are now.

Anyway, it worked really well for me. And too well, in fact. After about 5 days on the cereal, I was too loose! So it takes less for me than it says on the box. But it did work. Getting used to it and learning how much it takes for you is an experiment.

AS for the tremors. I get those too. They happen when my sympathetic system has been overworked. The extreme exhaustion follows when the parasympthetic system swings into high gear when the sympathetic system can't hold up any longer. I am not a doc, I just think this is what happens to me.

Anyway, you have done too much and put yourself in a "debt" situation. Go to bed for a few days (of course you need to get up and move each day to prevent blood clots) You shouldn't stay in bed all day, but you should not go placees and do things and you should get as much sleep as your body dictates. Also a tranquilizer if you can't sleep even though you feel tired may help.

You will get your equilibrium back. Then don't push yourself into losing it again.

Hugs!

Michigan Jan

[MomtoGiuliana]

Julia

sorry that you have been through so much. A lot of it sounds like 'normal' POTS stuff to me--the weakness, wobby feeling and the tremors. I get many of these symptoms you describe too when I go through a bad spell.

Like me, it sounds like you need to work on pacing yourself and allowing yourself to have bad episodes and listen to your body, and letting some things go. Hard I know.

I hope you start to mend soon.

Katherine

[Guest Julia59]

Thanks for all your support everyone!

Jan, I have all bran in the house and it woked for a while, but then that fizzled. Also I eat a lot of other fiber. Sometimes I get worse when I do the metamucil thing. I still have it around, but I know it doesn't work anymore.

I know my problems are probably from damaged nerves or something in that line. My bowels are very slow---and some types of fiber actually act as a plug. I have had IBS for so long----and lately it's gotten much worse with the constipation.

I also have a diverticuli in my small bowel near the jejunum and bile duct area's. Not a good place to have it---it's about the size of a quarter. I know this is gross, but I have actually seen whole wellbutrin---color--blue come out the other end. You know those pills must get stuck in that pocket in my small intestine festering things up even more. My bloat is right in the center of my gut.

The thought of all this is making me more depressed. I'm simply going to bring it up to Dr. Grubb again when I see him on the 22nd. I just don't want to have a bunch of GI testing again. At some point, I know I can't avoid it.

I just wish there was a drug with little or no side affects that would work some magic on this bowel junk with me. I'm starting to get cranky-----

Oh---Merril----Colace did nothing for me eaither. Stool softeners won't do the job unless combined with a stimulant. I avoid stimulant laxitives---but once in a while I get so bad, I have no choice---Then i'll pop the senokot-s----and sometime's that doesn't work right away.

Julie :0)

[Babis]

Julie,

My best answer is I don't know if your weakness and wobbling are due to POTS or chiari. But I will share my experience.

When I first started to get sick, I went through a three-month period when I would have strange weakness, where like you, I would have trouble picking even little things up, like coffee cups, and dropping things and having trouble with my hand movements (my handwriting changed to smaller letters, I had trouble with buttoning shirts, etc.). This lasted consistently for these three months; these were not spells. I seriously thought I had ALS at one point. I was also getting fasciculations - little muscle twitches - and was feeling so weak and tired.

During this process I lost a ton of weight and realized I was losing muscle mass, which seemed to be causing this "weakness."

I don't know if this is POTS or not, but it happened to me. Wish I could say I have recovered, but I can only say it has reached a plateau for me, and I have residual weakness and an inability to regain any muscle. But I do not "feel" as weak as I used to. Before I used to literally feel like I was dragging around a pile of bricks tied to each of my limbs. Now, when I go to pick up something heavy, I actually can't. So my perceived weakness that I had before has been replaced by real weakness. Does that make sense?

I don't know if this is the kind of info you're looking for, but thought I'd share.

Amy

Have you had your growth hormone / IGF1 checked?

Growth hormone deficiency can cause muscle loss, decreased cardiac output and sympathetic overactivity. The latter is one of the main causes of POTS.

(I was told this by a very sharp and well-informed neurology professor in Europe; most doctors are not aware of this connection unfortunately).