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Extreme Weakness--i Can Hardly Believe It Myself


Guest Julia59
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Guest Julia59

It's been a rough road the last few weeks---or maybe I should say months.

My husband just called from the grocery store, because I can no longer go---not even with help, so he has to call with questions about the grocery list. I used to tag along with him, but I can't stand up very long without the floor moving on me. It's depressing to not even be able to handle going to the grocery store with my husband.

My muscles in my body are getting weaker and weaker. I haven't made an appointment with any of my docs because I see Dr. Grubb in April, and my PCP for a full physical in May. My PCP was great, and understands my situation. She also wants to learn about dysautonomia---and my other conditions---EDS, and Chiari-0/congenital cervical spine stenosis ect.

Since I have had this cold (five weeks now)----I feel I can barely get of of bed this last few days, but I do. Since January I have been recording my BP---and it's been an average of 76/55 standing, and 98/60 sitting. My heart rate does not go up to compensate for the lowering BP---it hovers in the mid 80s. Sitting it is in the 70s. I still get runs of tachycardia---but it doesn't matter weather I sit or stand, and it can be sustained for a while---especially at times when I eat---mostly in the evening. If I attempt to do anything, I feel on the verge of collapse. Today I went to the meat store for three items----that was a huge mistake.............I was praying I would make it to my car. The meat store is only about a mile from me.

Dang----I just like to try and help a little around my house. My husband just works way too much to be coming home and doing everything himself. I try to do what I can----even if I have to nearly crawl around to do it.

I feel like I have a load of bricks in my right lower rib cage-----and I still have a wet cough. I hate going to the doctor. I want this cold to go away so badly so I don't have to see my Docs until my appointments coming up. My Aunt who is a nurse said I should get a chest x-ray. And of course all the coughing is wreaking havoc on my upper spine problems----which in turn wreaks havoc on my POTS and EDS----and then they all feed off eachother. Just sitting up creates popping/pulling sounds all up and down my torso---(front and back) I don't have a fever---so I don't think it's a bacterial infection. It's a virus---so antibiotics aren't going to work----and they really mess my POTS up anyway.

Remember when I said at least I can still open jars------well sadly that little bit of strength has ended for me. My hands hurt--------along with all the rest of my joints. The only comfortable position is laying down. I still push to do small things around the house.

My brain fog has been so bad that twice when I went to turn on my curling iron, I got the blow dryer out, plus I tried to open up the garage door with the TV remote control. The other day I was going off a street called the Anthony Wayne Trail that cuts through town from South Toledo/Maumee to DownTown in North Toledo. I ended up merging onto I-475 interstate---instead of veering to the right into downtown traffic. I was so weak I couldn't feel my body, and there was a huge semi on my rear end, and I was boxed in by more of them, and they wouldn't let me merge. I haven't been on the interstate in years due to poor reflexes---over active reflexes, so I stay off them. You can imagine my fear. I got off on the first exit---then turned the wrong way away from downtown.

In addition to all this---I have been dealing with some past demons---(past family issues)----and (past traumas) with Dr. Davis---and another family therapist. It's so mentally and physically draining to sort all this stuff out--including all the health issues---I just don't know weather i'm coming or going.

I can't help but think that more is going on with my health---something neurological. I wonder if the pressure on my upper spine and brain stem can cause all this. And is POTS a separate issue all together?

I have had muscle wasting in my legs, arms and hands. Dr. Heffez---(NSG) did tell me I have myelopathy, but I just don't want to believe it I guess. And could that cause the muscle waste? And the PAIN-----well i'm about to scream on that one. There will definately have to be some kind of pain management discussion. The only problem is that I am sensitive to everything------so this will cause more havoc in my body. Trade on **** for another.

I would say sorry for the vent---but I know you all understand.

Julie :0)

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Julie,

I hope you get to feeling better soon!!!

When I got a virus in December it took me several months to recover from it so I think it's common for us to respond so harshly from common ailments.

Hang on for your appt's this next month. Hopefully you will get some answers.

I wish I had more to offer; I can tell you I understand how bad the fatigue and all that comes with this disorder can be but I no that's not a big help to you except to let you know you aren't alone.

Wishing you better days soon!!

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Julie,

Wow. That's a lot to be dealing with. I don't know anything about what's causing what, or what is POTS/not POTS. But I just wanted to remind you I went through a period of six months (starting with my onset of POTS after giving birth to my daughter) when I lost a ton of weight, resulting in a major loss of muscle and significant strength loss. I have recovered about 20 percent of what I lost, so I still am not good. But I am better than I was. I have no idea what was the cause in my case; I had every test under the sun. But it did eventually stop, and for the first time since, I gained five pounds about a month ago. (Unfortunately, it all went to my waist -- yuck!)

But anyway, just wanted to say that strange, inexplicable things happen, and who knows what's going on. I would definitely get the cough checked out if you feel that sick. Are you having any difficulty breathing? Is the phlegm you are coughing up dark in color? Those would be warning signs of pneumonia.

I hope you start to feel better soon. Try to take care of yourself, and rest.

Amy

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Julia,

That's a miserable place to be! I'm so sorry it's all heaped up on you. You are a trooper, but you might have to go in if it gets any worse. Any chance you could be anemic?

Maybe some of the counseling stuff can wait until you have more emotional energy for that? Sounds like all your physical stuff is quite draining.

I hope things clear up for you soon, and you find some relief.

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Julie, I hope you feel better soon. I was just talking with my neighbor and they've had several relatives with an upper respiratory thing that's hung on for at least a month! Teri was at the doctor's office on Thurs for a sinus infection and the waiting room was full--that's a first--the doc said they've seen brochitis pretty much for 90% of their visits for a few weeks now. Not that it makes you feel too much better, but you surely are not alone this Spring!

I hope you can hang in there and that your body shakes loose whatever is hanging on. Nina

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:blink: Julie Hi dear!! i hope that you start feeling better soon!! I know that last week you where feeling pretty rotten when I saw you!!

:( :( :( feel better!! get alll your furry babies together..(dont lift spencer!! let him jump up!! lol) and climb in bed and take a nice nap.. pamper your self!! and yes please do call you PCP soon and get you chest listened too.. you dont want an upper respitory infection to turn into pneumonia!!

i had pneumonia right around this time alst year.. and it knocked me down for months.. so I know you feel like poo.. but if ron has a day off during the week this week can you have him drive you to the docs? HMMM...???

hang in there Julie.. feel better soon dear!!

lots of HUGS :) :)

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sorry to hear you are feeling so bad, you should really try not to do that much when your bp is so low and dont feel bad that you cant help, its not your fault that you are sick, when i had a bad wet cough, the herb mullein helped alot to bring up mucus and eventually get rid of the cough, just wanted you to know i feel for you and really hope you get some relief soon,

radha

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Guest Julia59

Thanks for all the support and replies everyone! :)

Linda, don't worry, I won't lift Spencer, but last night he thought he would take a nap on my chest, and had to nudge him away from my chest. I think he knows when i'm feeling crappy. He's a heavy boy---18 pounder, and he eats the same as Samantha---the 4 pounder. :)

I'm really on the fence on this one---not sure what to do. My PCP is a drive across town, and Bev is right around the corner. She could order the chest x-ray at least. This cold is really screwing with me---it seems like it's clearing up, then it keeps coming back. I just want to get rid of that load of bricks in my right side. Feels like they are all packed inside my rib cage.

Although I have been getting weaker, and more fatigued over the past few months----these last three/four weeks have really been bad---so fluish. But NO FEVER----------only a low grade one when this stuff started----now it's below normal.

I feel like a booger nose. :)

I think i'll see if I can get in to see Bev.

I'll keep you posted-------thanks again.......

Julie :0)

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i'm so sorry you have been feeling so badly. I can really relate since I got that horrible stomache flu about 6 weeks ago and it is still hanging on....

It is making life much harder... MUCH

My GP said that it is lasting 6 to 8 weeks in healthy people.. I was like GREAT ..waht does that mean for me?? 2 Years??????!!!! :)

Anyway, hang in there as best you can........ take it one step at a time and you will get through.

Ihope you start to feel better soon :)

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A cold that won't go away? Could be hayfever, on top of other things. It's tree pollen time in the US.

www.pollen.com

Allergies hit POTS patients especially hard. As soon as juniper pollen shows up in the pollen counts, I get severe tachycardia. Sometimes without even a sniffle. Ask the doc (and the pharmacist) if you can take some antihistamine.

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Guest Julia59

Tomorrow I go and see Bev in Dr. Grubb's office. I have never had allergies before---not one sniff....

I would see my PCP, but she is on the other side of town, and I have to go alone, as my husband can not take time off work for every appointment. Usually driving accross town is no problem, but lately I have been struggle just to steer the car.

I am sneezing several times a day---like I usually do at the BEGINNING of a cold-----but this is lasting, but the main problem is that I feel like there is a load of bricks in the right side of chest. I'm still coughing quite a bit. The cough came first---and my cold started in my chest-----when my colds usually always start in my head first. This is the most unusual cold I have ever had.

I will mention allergies, but I doubt I can handle any antihistimines. My heart is so touchy---I would probably get tachy and stay that way. I still get tachy on my beta blockers. The lymph nodes in my arm pits are very sore, and the it's difficult to use my arms because of this. All my POTS issues are just so much worse, and I just feel like a train wreck.

Jenn202----I hope you feel better soon---that doesn't sound too good either. I heard the bugs this year are lasting longer. Must be more then one bug----my stomach is OK---however, my appetite is pretty low from all this. I CAN'T TASTE CHOCOLATE!--so what's the use of going on-------LOL

My husband has brought me my favorite candy bar---DOVE, and I usually take two squares and give him the rest---now he just gets the whole thing in his lunch the next day.

Now I know the world is ending---- :)

All kidding aside-----tomorrow I will be getting things checked out---and hopefully start to get better.

I will request a chest x-ray----gets these lungs checked out.

I can't imagine allergies----that would sure throw a monkey wrench into the mix---wouldn't it.............. :)

Julie :0)

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glad that you are finally going to be seen!! make sure to get that chest x-ray done!! hopefully they can help you with this!!

HUGS

Linda

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How'd you do with Bev? Personally, I have terrible seasonal allergies and live on all sorts of allergy meds. It does make spring and fall more fun when I'm not wheezing, sniffilling and clearing my throat all day and night ;) If that's what's got you in it's grip, then there are loads of good allergy treatments out there to help you be more comfortable, and maybe help you not feel so worn down. Allergies on top of POTS or NCS can really just be that "straw that breaks the camel's back".

Fill us in when you get the time. Nina

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Guest Julia59

Thanks,

My appointment is at 2:00pm today. I'll fill you in on what I find out. ( by the way, is the time on this forum screwed up---because it never has the right time on there?)

Main focus will be getting my chest x-ray to make sure my lungs are clear---I think they are---but....

Next----my low BP----average of 75/55---something like that standing)---sitting---100/60 average.

I'll bring up ANS testing---such as catecholamines ect. I will discuss that in more detail with Dr. Grubb on April 18th---my appointment.

And of course I will bring up allergies---------I know it can happen later in adulthood. Seriously I never had a sniffle in my life other then when I had a cold. Now I can't get it to stop---and sneezing a lot/

This is so weird. Maybe when I was 16 I had hayfever that late summer---someone commented on that in summer camp. 30 years later---well it would just be weird. But I know it happens---it happened to my sister in law (husband's sister) when she turned 50.

Is it common to have a little blood streaking in the mucus?-------sorry, a bit graphic.

Julie :0)

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When my allergies are really bad, I get blood in my mucous too. My nasal passages get really irritated. I've also gotten a few bad nosebleeds during my worst times--the doc then has me use a nasal spray decongestant, like dristan, which helps the bleeding to stop. worst case scenario, I go to his office and they cauterize it if it wont stop with spray.

I didn't get allergies until my late 20's. Nina

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