little_blue_jay

Huh, I sit the opposite - leaning way back in the chair, legs stretched out forward i.e. as close to horizontal as I can LOL

Same here! I thought it was funny (in an odd funny way, you all know what I mean!) that sometimes my upper body is sweaty and hot, and at the same time my hands are ice cold! It would happen at work alot. My coworkers would be complaining about the heat, and I'd let them feel my cold hands, and they'd be incredulous.

Yes when I'm having a bad flare-up if I have to go to the store for something walking down the laundry aisle gives me a headache. So many super-concentrated fake chemical scents

Thanks AllAboutPeace, for replying! Sorry I didn't reply sooner, my computer's been acting up! (maybe it has dysautonomia LOL) Great suggestions on giving lots of details. I think I did that the first time years ago, but I am definitely worse now. And yeah when I have a flare-up I have had to take my dishes in 'stages'! Like wash a few, sit down & let my HR come down, wash a few more, etc. as my legs would feel so weak because of being so tachy, and the shortness of breath would be brutal. And as I wrote in the first post, when I was really bad I could not even take a bath! Absolutely agree on what you said about not knowing whether to commit to something when you don't know when you'll relapse! I am going through that now - I feel like I could *almost* go back to work now, but I just know I am a few bad days' sleep away from a relapse, and as I said in my first post I cannot just keep disappearing from work for 3 weeks at a time every couple of months, they will get real fed up with me! So I seem to be kind of committed now to going through EI and/or welfare. I am awaiting a tilt table test, but according to my doc it is a '1- to 2-year wait' to see the specialist! Next flare I will try to get an appointment and get him (my doc) to do a 'poor man's TTT' on me, so he can see me on a really bad day! I actually think the poor man's TTT is more accurate anyway, as the table test doesn't really represent what happens with you actually standing and having your legs support you (or try to!) I have tried to figure out what my 'triggers' are, and I can't figure it out. I was trying to get good sleep last time; I was only being given 3 shifts a week towards the end because I kept going home early, so I had 4 days off every week to catch up on sleep, and rest, and still I flared bad. So I don't know. Maybe it was the stress of the place? Tim Horton's can be very busy and stressful; you're expected to work fast, sometimes I'd be the only person on counter with a long line-up, etc. Sometimes I don't really like it, but in this economy I thought I should just be grateful to have a job! I really should start a journal of symptoms, writing down what I eat, etc. I eat nearly nothing 'commercial', i.e. with a brand name on it; I cook from scratch, fanatically avoid MSG, etc. So unless it's the stress of work I don't know what triggers my relapses! Do you happen to still have the links to the peer-reviewed articles you submitted?

"dilated hypertropic cardiomyopathy" , sounds scary, hopefully it isn't that! Sounds like you've got a great doctor! "Genius diagnostician", sounds like House! TMI coming: If you don't mind my asking, what did anyone tell you for the chronic constipation? I have that too. All my doc told me to do is 'take Lax-a-day till your poops are the thickness of your thumb'! Great, till I get dependent on it

I do! A couple of nights ago it was happening to me lying in bed trying to fall asleep. I hate those pains! For me they never happen on the right side, always on the left! And what else am I supposed to think but, "my heart!" If they'd happen on the right once in a while it wouldn't be so worrisome, but always on the left!!?? For me it's not usually "upper" chest, more like under my left breast or around the centre of the chest towards the left. It doesn't seem to follow any rhyme or reason - I've had them at work, at home, walking outside, doing light gardening or dishes, just sitting watching TV all relaxed, lying in bed, etc. I know my heart should be fine as I have had so many EKGs, Holter, loop recorder, etc and except for my loop recorder showing 'sinus tachycardia' which my doc wasn't concerned about (he is aware of my suspicions about POTS) nothing shows a problem.

Bump. Are there really no Canadians here on Disability?

Protein of some kind, usually poached eggs with butter & sea salt or salty bacon & eggs, always with a mug of tea.

Well so I had a good few months since my last flare-up. I am having a bad flare-up the last few weeks. The last few days I tried to work a couple of weeks ago, I was so tachy I kept going home early, each shift I was leaving earlier & earlier. The last day I tried to work, I did not even last 20 minutes before I had to go sit down, and I didn't actually take my HR but I believe it felt like it had hit 200 or pretty close. The supervisor kept telling me I had to go clock out ("we can't pay you to sit here") meanwhile I was doubled over trying to catch my breath, fearing that I'd either faint or my heart would stop, no joke. So considerate, some of my co-workers, eh. She finally said "what's your code, I'll clock you out". I asked a cab to be phoned as even though I only live 10 minutes away I could not walk home. She said that before I leave I had to sign something saying they can take me off the schedule as I am "unreliable and can't keep going home right after your shift starts". Really I can't blame them for that. So she wrote up a note saying I give permission to be taken off the schedule. I'm not fired, they legally have to hold my job for me, but I cannot work. I didn't have the mental wherewithals to ask for a photocopy but I can acquire one - the manager there is very nice. (He wasn't there at the time this happened.) Sorry this is rambling already! Anyway years ago when I was first diagnosed with "fibromyalgia/CFS" I applied for Disability and was denied, as at the time I could work parttime on reduced hours. Now I have been "taken off the schedule" as I cannot work when I am having a bad flare-up, and I don't blame them for doing that, I am unreliable but I can't help it. My POTS waxes & wanes. That last day at work, I said to them, "nobody can say I didn't try". I have requested my family doctor refer me to one of two specialists in Hamilton Ontario who diagnose POTS. He has done this, however he warned me that the wait list is "one to two years"! (I keep reading that POTS is 'rare' - if it's that 'rare' why is the wait time this flippin' long??) He mentioned some heart drugs that potentially slow down the heart rate but to give him credit he does not seem like a 'drug pusher' type doctor - he did warn me that those drugs have bad side effects and sometimes slow the HR too much, and didn't seem keen on having me try any, and I told him I am very sensitive to basically everything (I've had reactions to vitamins and CoQ10!) I don't really want to go the drug route either. I have knee-high compression socks I wear to work but they sure haven't been helping much. Even if this flare-up goes away in a few days or weeks, I know that it will happen again, and when it does it is so bad I could not even take a bath. My heart rate was so fast for a few days I could barely look after myself, I had next to no appetite, and I ran a bath one night as it's summer here & I was sweaty, all I wanted was a cool bath & to go lie down again, and I did not even feel confident I could safely get in as my heart rate was so high, and I told this to my doctor, that I was afraid of fainting in the tub, that when it is bad it interferes with me caring for myself, let alone going to work. And say I go back to work and I have another flare-up - I can't be just disappearing for 2 or 3 weeks every month or two, they're going to get real fed up with me! (I work at Tim Hortons so it's all standing & walking! And you're expected to move at a fast pace too.) So without a diagnosis what are my chances of getting Disability this time? Today I applied for EI Sick Benefits which is for up to 15 weeks. I also applied for Ontario Works (welfare) so I'll go with whichever pays more. I was also given the ODSP forms for my doctor which he says he has no problem filling out for me again. Basically I would like to hear from any Canadians here on Disability or ODSP - how did you convince them to approve you since as we all know this syndrome is "invisible" and "you look fine" etc etc. How many times were you denied? Is there anything I can do or add to the application to get it approved this time around? Especially if anyone here has the 'relapsing/remitting' type? I am already fearing that if I have a Disability hearing that it'll fall on a 'good day' when I'm not tachy & gasping for air! Should I be starting a 'symptom journal'? How much would that help if they only look at the 'good days' and not the bad? If my POTS was always there I think I'd have an easier time to convince them in a way.... but I can't help that it comes & goes! I have tried so hard to work but in the end it was out of my hands that they took me off the schedule. Any advice or helpful hints? Thanks to anyone who read through all this!

I am interested in hearing more about this myself. Although when I was in my last bad flare I didn't dare use because it makes my heart rate go up and when I'm flaring I'm already tachy enough! When I'm not in a flare and I can sense I'll have one of my insomniac nights it definitely helps.

Yeah, I don't really talk non-stop but working in a coffee shop I talk alot, taking orders, etc. and I do find I get short of breath from talking and it helps to have a cup of water beside me but it's against the rules to have a personal drink out front although certain supervisors allow it, it's better than me having to clear my throat of phlegm every other minute! My voice gets hoarser and the constant throat-clearing drives me nuts. I catch myself mouth-breathing though and I've been reading that this is very bad - I need to start making a conscious effort to nose-breathe. I found this article just yesterday and he mentions 'excessive talking' affecting breathing negatively: http://fitness.mercola.com/sites/fitness/archive/2013/12/27/proper-exercise-breathing.aspx

lfreem02, I sigh alot too! Every few minutes really. I must sigh alot more than I notice because a co-worker mentioned it one day then I started paying attention to it, it is as though I am not getting enough air. It is a frustrating feeling! I had a heart ultrasound several years ago which came back fine. I wake up not at all refreshed, I've told my doctor I feel somedays I could get up, eat breakfast and go right back to bed. I've tried a sleep lab twice, first time I didn't sleep, second time I only fell into a light sleep and they said something about 'upper airway resistance something-or-other' which my doctor wasn't worried at all about, he said it's a BS thing they come up with to try to get you to buy a CPAP machine..... I did go to the walk-in clinic after work today and mentioned both of these symptoms. He typed it all in to the computer so my own doc will see the report. This doc listened to my lungs and said I'm not wheezy and my heart sounded good and even, I mentioned the worry about a blood clot and he said there would be certain pulse noises he would detect if that was the case. For the edema he ordered kidney function tests which I have to go back to the lab for tomorrow. I had blood work done only a few weeks ago and kidney function was just fine, the only thing was the low iron which I already knew about. So this edema thing is puzzling. I don't like my pants getting tighter! Any tighter than this and I'm going to have to ask work to order me a pair one size up

My 'meds' if you could call them that are listed in my signature. Not much but iron and vitamins really... the 23rd is the soonest I can see my own doctor.

But what would be causing mine if I'm not on any meds that would do that? I'm seriously trying not to scare myself that it's something bad like a blood clot in the lung (which my doctor ordered a test for a couple years ago when I had bad shortness of breath, it was normal thank goodness, he frightened me!) or pulmonary hypertension or something. I've just searched for any correlation with MCAS and edema and I can't find anything that links them...

Yes avoid MSG, it's poison!

Yes, now that you mention it! I do always have the indentations around my ankles from my socks. I've pointed this out to a doctor I saw at the walk-in clinic and she said 'everybody gets that, it's normal' but it does seem like it's gotten a bit worse lately. What would this edema indicate?

Has anyone else had both unexplained weight gain and worsening shortness of breath around the same time? Are they connected somehow - i.e. not enough oxygen carried to cells cause weight gain? The last couple weeks I've been getting a bit pudgier, I'm too afraid of the number I'll see to step on the scale and find out but everything's getting tighter below the belt. Absolutely no change in diet, low carb Paleo, etc. No addition or changes in meds etc. Plus I am having worse shortness of breath - now the last couple days here in Ontario it has been getting damper which isn't good for lung issues but this seemed to have started before this rainy weather so I can't figure it out. I do have a Ventolin puffer but it makes me jittery & tachy so I don't use it unless I really feel I have to. Every few minutes I feel I need to take a deep breath but the lungs feel like they don't want to open - I think of it as an old accordion that I'm trying to open but it won't I do have a doc app't on the 23rd, that was the absolute soonest they could get me in, he is always prebooked so far in advance and it's a b*tch to get in to see him. I wondered if anyone else had these two symptoms get worse together and how/if they're related? (Sorry if this is TMI but I'm after my period so the weight gain isn't that!)

Totally relatable! Thanks for the laugh! I did an oops the other day at work myself - I work in a coffee shop and went to go make someone's tea and put the teabag into the cup, then actually put the lid on. Sans hot water. At least when I picked it up and noticed how light it was I realized the oops Wow, what a scatterbrain moment eh

Mike, I've heard of that book before, so I just went to both ebay and amazon to check for it, wow that's an expensive book! Nothing below about $66 on either site! She does have a cheaper book called The Wahls Protocol which is about $16 for the Kindle version, I wonder if most of her principles from the main book are mentioned in that one....

JuneFlower, yes I've asked him, he just chalks it up to the IBS-C! Which doesn't really explain anything.

My abdominal pain doesn't happen often, not every day at all, but when it does it is not a general pain all over but more of a sharp stabbing pain deep in my guts in the lower abdomen. Sometimes I think it is gas pains but it seems to make no difference whether I've 'gone to the bathroom' that day or not. They'll be so sharp that I literally have to stop what I'm doing and bend over at a 45 degree angle and clutch my abdomen and it takes my breath away. The good side is it's usually gone in 5 or 6 seconds. Never tried abdominal compression. I wear knee high low compression stockings at work because I work in a coffee shop standing, they do seem to help the blood-pooling feeling in my legs. If anyone else gets sharp stabbing pains like what I've described and you've figured out something that helps, let me know!

If you were biking outside I'd guess you were riding into the wind and having to struggle to push against the wind, but if this is exercise therapy being indoors sans wind then I don't know! Good suggestion to post that question for the newsletter.

I don't remember my dreams. Sometimes I wake up thinking "that was a strange dream" but I don't remember a single detail of what it was!!! I have researched since last summer something called "Pyroluria" (I think I have/had it) and one prominent sign is poor to no dream recall.

Doesn't seem as though there's anyone who's tried Quercetin?

I get this when I am just on the moment between awake and asleep, it'll feel like my heart's stopped for second longer than it should, and sometimes I gasp a breath in feeling like I've almost just died! It's scary and if it happens a couple nights in a row I sort of dread falling asleep for fear it'll happen again. And trust me I want to fall asleep! Just sans the heart stoppage feeling. I've had 2 holter monitors and many ecg's and my heart is fine, but it's still scary!