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Just As I Thought Things Were Improving...pow!


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Things were looking up for me this past year; I still had a fast heart-rate but that is normal to me..all of my other symptoms seemed to lessen if not vanish all together...until last month. It all started with what I call my "attacks." Now I have a few small palpatations daily but during my attacks my heart beats out of my chest and can get up to 200, it sort of feels like a fish is jumping around in my chest and I can't breathe and go into fight or flight mode. I had one of these attacks one morning (oddly while bending down to pick something up, it just set it off?) and with it came back all those annoying symptoms including dizziness, shortness of breath, brain fog, and extreme weakness..the weakness come out of nowhere! When its really bad I just want to break down and cry ,but I feel to weak to even cry. I have also noticed an increase in leg pain..some days they ache so bad it prevents me from attending class.

In addition, I have noticed a grape sized knot under my jaw line that has been there for 2 weeks now. Im setting up an appointment later this week. Maybe this has me more stressed out..

Im also a mom to three beautiful children (all under 7) and my husband works out of town and is only home 4-5 days a month..I feel like such a bad mom at times; when I feel bad my patience is thin and I get upset because I can't do all the things I want to with them..my biggest wish is just to run with them and play tag, the little things..

Just seeking advice I guess and needed to vent..I feel like nobody understands and it makes me so angry when people without pots say they know how I feel (only if they could - just for a minute) Id never wish this on anyone, but I guess sometimes misery loves company :)

*Please excuse all the grammar mistakes..still getting used to this tablet and someime I tend to ramble!

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Oh I know how it ticks me off too when people say "they know how I feel", oh "no you don't!" I feel like saying! :angry:

The worst is when you try to explain that the more you try to do, the faster your heart rate gets, and they're like "oh you're just unfit, you gotta start exercising more!" :angry::angry::angry:

I can relate to just about everything you said (except for the kids part, I don't have kids!) I've been having a bad flare too, the last couple weeks. I have a roommate but he's starting a business and he's barely ever here and like you I hate feeling crummy when you're by yourself (well you're not technically by yourself as you have kids, but you know what I mean, no other adults around! I always am petrified that I'll faint when home alone and nobody around to help!)

My fatigue has been so bad lately too! I absolutely hate it! I know my sleep schedule is totally buggered up right now, I can't seem to fix it even by staying up all night and all day, it only makes me absolutely exhausted but my circadian rhythm just won't straighten out. I sleep during the day and up all night and I hate it. And if I'm not in a flare-up I sleep like 10 hours but still don't feel rested! But lately my sleep is so broken up, I toss & turn, it is very frustrating!

I had to get up early today for a doctor's appointment, and I have to wake up even earlier tomorrow for a house inspection (yearly thing from the place we rent from)

The grape-sized knot: sounds like a swollen lymph node perhaps? I know we have lymph nodes all over our neck, jawlines, etc. Is there a corresponding one on the opposite side?

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Thanks for the reply! Funny you mention that, I tell my husband "oh no you dont" many times..sounds horrible I know, but when you feel bad sometimes you just can't help it!

I have that same fear as well. Thankfully im not known to pass out *knock on wood!* but its still scary. I actually considered getting one of those medlife (think thats the name) buttons to wear in case something does happen since my kids are so young.

That sleeping schedule sounds crazy! Does your symptoms get worse with exhaustion? I notice if I stay up to late ill have a major flare. Im also scared of sleep apnea..every few days ill wake myself up every 5 minutes bc it feels like my body forgets to breathe..ive aways assumed it was just another pots symptom.

There is not another lump on the left side. Im hoping its just a lymp node so im trying to wait it out and see if it goes down...Lordy I just realized how screwed up my body seems to be :) Not sure why I found that ammusing lol, either laugh or cry, right?

Hope things get better on your end! Sometimes it really helps just having another person who can relate.

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It really does help! Like you said misery does love company! I remember how happy & relieved I was when I first found this forum and read so many other stories just like mine! Not happy that so many others have this too, just happy that I wasn't the only one nor was I going crazy!

I've come on here late at night when I'm tachy and short of breath and trying not to panic about it, and I read a few threads and it really helps, to know there are others out there who are feeling the same crummy symptoms!

Yeah I'm not known to pass out either *knocks on wood too* but I know I've come close - I had times standing at work when my heart rate was super high and my vision would start to go gray and blurry - I had to have been pretty close! That's what I felt like the last day I tried to work. That was it for that place for me :( (was a coffee shop, no sit-down jobs there!)

Oh yes I feel much worse when over-exhausted! And during a flare-up is when I need some good sleep, and that's when my sleep goes all haywire! It's a vicious circle!

Have you had a sleep study to see if you have sleep apnea? I've tried twice to do a sleep study but failed to sleep as I have a hard time sleeping in a strange environment, plus the room was super cold and I wasn't allowed to use the heater and the blankie they brought me didn't help much. The second time the room was warmer (was summer) but I could hear the guy across the hall blowing his nose all night :rolleyes: I'm being sent for a third attempt to a different sleep lab in November. I don't think I have sleep apnea, but I keep complaining to my doctor that my sleep isn't refreshing.

Sleep apnea sounds terrifying - I'd be afraid to fall asleep, and that's an awful feeling to have. Once I was on an antibiotic that after 1 pill made me feel like I had stopped breathing (I had laid down for a nap) and after I got it switched I looked up the first one and found several anecdotes of people who had had the exact same reaction as I had! The pharmacist hadn't warned me :blink: Even after I switched to a safer antibiotic (I had been on it previously so knew I could take it) I was petrified to fall asleep that night :wacko:

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Hi MomWithPots.

It sounds like you have a similar lump to one I had the other month. I have CFS as well as POTS, so am used to the lymph glands in my neck swelling and subsiding. However, I developed one grape-sized lump under my jaw on the lefthand side. It almost seemed as though it was attached to my jawbone and felt quite different to any other lump I'd ever had in my neck.

My GP gave me a course of antibiotics, but also booked me in for an ultrasound scan in 4 weeks time, in case the lump persisted. Luckily, it began to recede about 3-4 days after starting the tablets and hasn't returned.

I do hope things improve for you soon, and that your lump turns out to be nothing to worry about.

**Forgot to say, my GP attributed the lump to CFS, but said never to take such things for granted, always get them checked out if they don't go away after a week or so.

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I too had a lump develop right under my jaw and also had a bit of swelling. Thought sure it was tooth related because I have problems in that area. however x=rays showed no abscess etc... took 2 rounds of antibiotics and it finally went away. Is yours tender to the touch??

Isn't it odd how three of us have had this???

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