Tag Archives: Pain

Changes: Living with Postural Orthostatic Tachycardia Syndrome

CHANGES: Living with Postural Orthostatic Tachycardia Syndrome (POTS)

“If I hear, one more time, how good I look I’d like to punch somebody in the face…” LOLOL

This video was created by the folks at DINET

There are more parts (4, 5 etc) listed on you tube for that video but it actually ends at part 3 (and then starts over again in error). I bet someone with dysautonomia uploaded it haha. 😛 Thanks to whomever did.

I’ve said before that this blog is where I complain about being sick so… venting ahoy!…last week was the first time I said to myself, f*ck it, this (being alive with EDS and POTS) is too hard, I’d rather give up. :/ Didn’t last long though; just have to rearrange my support system (down to 1 IRL person LOL) & have better boundaries.I’m working on my SSDI “function report” – SSA-3373 where you innumerate what you used to be able to do compared to now, in excruciating detail. Blurgh.Last week I also made an appt with the pain clinic (next month) to see about going on Tramadol or whatever. I was reading this thread about pain tolerance & I thought back to when I had my middle finger (ha) accidentally slammed in a car door and broken in a couple places. That was about a 6 on my pain scale. I am about a 4 or 5 all the time though, so maybe I should get something? I’ll talk to my pain Dr about it. I’m getting myofascial release tomorrow and that always knocks the number down for me for a week or so.I have been hesitant to go on pain meds because I don’t want to be all stoned & also, I go to the grocery store etc a couple times a month in the car & I don’t want to have to give up driving. :/

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Product Review: Therabath Professional Paraffin Bath

I’m doing some reviews of items that have made my life easier, as I’ve had to adjust to having an Ehlers Danlos syndrome body. I am not being paid nor am I receiving anything for writing this review, but if you click on a product ad and buy an item I get a % at no additional cost to you.

Product Review: Therabath Professional Paraffin Bath

As I mentioned previously, when I lost health insurance I purchased some things I thought might help with pain relief. This parafin bath was one of the items.


TherabathPRO Professional Grade Paraffin Bath, Lavender Harmony

I have joint pain, but what bothers me the most is soft tissue pain, and that includes my hands.

This is a well-made product, sturdy, big enough to stick your foot in, and it comes with a lid and wax.

Someone needs to invent a bathtub-sized paraffin bath, so you can put your whole body in there.

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Product Review: Shakti Mat

I’m doing some reviews of items that have made my life easier, as I’ve had to adjust to having an Ehlers Danlos syndrome body.

I am not being paid nor am I receiving anything for writing this review, but if you click on a product ad and buy an item I get a % at no additional cost to you.

Product Review: Shatki Mat

When I had to quit working (therefore losing health insurance) I bought some things that I hoped would help with pain relief. I knew I wouldn’t be going to the pain clinic anymore for trigger point injections. (Costs thousands….)


Shakti Mat TM – The Original (Green)

This is one of the things I tried. The Shakti Mat is a thin 17″ x 27″ fabric mat, with sharp plastic spikes on it.

It’s a portable “bed of nails.” One lies down on it, which hurts for the first few minutes, but eventually it creates an endorphin rush. The spikes are pointy so if you do use it, do it nekkidly or wear an old t shirt, because it will wreck your clothing.

I do use the Shakti Mat and it definitely helps with pain relief but it seems cheaply made (fabric is very thin) & so it isn’t worth the price. (Which has gone up since I bought it last year.) Maybe there is a cheaper knockoff?

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Product Review: Corelle Livingware

I’m doing some reviews of items that have made my life easier, as I’ve had to adjust to having an Ehlers Danlos syndrome body.

I am not being paid nor am I receiving anything for writing this review, but if you click on a product ad and buy an item I get a % at no additional cost to you.

Product Review: Corelle Livingware

I guess Corelle plates have been around a long time, and I think my friend’s family used them when we were kids, but I hadn’t heard of it until recently. (I grew up in a restaurant so I ate at the counter, on restaurant dishes.)



Corelle Livingware 16-Piece Dinnerware Set, Service for 4, Classic Cafe Red

Corelle plates are made of Vitrelle – layered tempered glass – which is used in scientific applications quite a bit. Beakers and such. It is very durable but can only go up to a certain temperature in the oven (350F).

I got the dinnerware because it is very very lightweight, and very very tough. That makes it easy on one’s joints & forgiving of EDS klutziness. These plates are way way lighter than the bowls and plates we had been using.

It’s been about 5 months since I started using it, and I’ve had no problems at all. It would be nice to have salad plates with the sets though.

I see the dinnerware sets have gone up in price about $5 since I got mine….

(Like everything else these days.)

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The Complete Tightwad Gazette

side effects, sleep, etc

About a month ago, the pain clinic put me on a med (the name of it kind of sounds like cymbals hint hint) to help my myofascial soft tissue pain, and it works pretty good! The only thing is that it makes me crash. As in sleeping 15-20 hours. 😦

So we’ve tried switching from taking it in the day versus afternoon, etc. and somehow I have gotten on this sleep schedule that has me sleeping from 3 to 4 am (insomnia) until 4 or 5pm in the afternoon. Gah. Sleeping 12 hours vs 20 hours is on the right track though.

I’m naturally a night person & I can usually do the “stay up all night” trick to become sleepy the next day, in order to sleep at night like normal people. Not working now though.

I’ve decided going to stick it out for 1 more refill because it is working for my leg muscle and arm muscle pain. I guess you just have to decide if the side effects outweigh the benefits.

*****

One of our cats has been missing for 2 weeks now. If you friended me on facebook that’s her picture in my facebook profile. I’m really sad about it because I must have accidentally let her get out (indoor cat). That’s why I re-joined Facebook – my (small) town is on FB so I’ve posted about her.

For the past 10 years she’s slept right on me every night, so her presence is definitely missed. Very sweet healer kitty.

There’s going to be an ad in the local paper the day after tomorrow; I’m still looking.

Product Review: Zibra Universal Package Opener

I’m doing some reviews of items that have made my life easier, as I’ve had to adjust to having an Ehlers Danlos syndrome body.

I am not being paid nor am I receiving anything for writing this review, but if you click on a product ad and buy an item I get a % at no additional cost to you.

Zibra Open It Universal Package Opener

Zibra ZPCOPEN-OR Open It Universal Package Opener

This is stupid, I thought, when I bought this thing. I have scissors and knives.

But I have to admit, this thing does the job. On one end is a clipper, and inside the other end (handles) are a retractable screwdriver and boxcutter.

This is why the Open It opener is better than scissors: the clipper/scissor function is SPRING LOADED. So if you have hand pain or weakness you can still cut through that ^#%@ plastic clamshell blister packaging without dislocating or bruising your entire hand.

Plus when I would use scissors I would invariably cut myself on the packaging and bleed all over the durn place.

 The product description on Amazon suggests that it “Solves wrap rage.” I don’t currently have problems with wrap rage so, indeed, it must be working.

NCAA Tennessee Volunteers Garden Gnome

The Zibra opener only comes in 1 color – blaze orange (AKA Vols Orange, in some parts of the country). The color is handy for knowing where it is at all times,  and is fashionable if you live in Tennessee, but may be problematic for consumers who live in FL or AL.

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Product Review: Slimfit Wrist Support Brace

I’m doing some reviews of items that have made my life easier, as I’ve had to adjust to having an Ehlers Danlos syndrome body.

I am not being paid nor am I receiving anything for writing this review, but if you click on a product ad and buy an item I get a % at no additional cost to you.

Wellgate for Women Slimfit Wrist Support


Wellgate for Women Slimfit Wrist Support, Right

I have a skinny upper body and a fat lower body. My arms / wrists are thin so I was happy to find a wrist brace that has an adjustable and comfortable fit. I can sleep in it with no problem because it has cozy memory foam inside and secure straps on the outside.
The Slimfit Wrist Support brace is wearing very well – I’ve used it a lot and the seams and fabric are holding up. The manufacturer says to hand wash the brace but I’ve put it in the washer in a lingerie bag and then air dried it and it didn’t get wrecked.
This wrist brace never gets a sweaty stinky smell, either. I hate that foam rubbery stinky smelly stench that some man-made fabric or foam can get.
[Joan Crawford voice: “NO FOAM RUBBER, EVER!”]

Mommie Dearest (Hollywood Royalty/Special Collector’s Edition)

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Product Review: TENS Unit Electrodes

I’m doing some reviews of items that have made my life easier, as I’ve had to adjust to having an Ehlers Danlos syndrome body.

I am not being paid nor am I receiving anything for writing this review, but if you click on a product ad and buy an item I get a % at no additional cost to you.

Premium Pre-Gelled TENS Unit Two Inch Round Reusable Electrodes 1 Packs of 4 (4 Total Electrodes)

These 4 TENS electrodes are available on Amazon for $3.49 to $2.50 and free shipping; a very good deal.

I have sensitive skin when it comes to adhesives, due to Classic Ehlers Danlos syndrome. These electrodes don’t bother my skin at all, while also being very sticky and not budging from wherever they are stuck to. (My back and my shoulders, primarily.)

I’m not sure if buying in bulk would save one money; larger quantities are available on Amazon for a lower unit price. I was afraid to buy in bulk with these – how well do TENS electrodes age? Does the sticky gel degrade? Dry out? Start to stink? I don’t know.

I’ve been reusing these & they still stick OK so I’m “sticking” with them for a while before I need to buy some more hardee har har har.

Get Thee To A Punnery

Get Thee To A Punnery

>
Get Thee to a Punnery: An Anthology of Intentional Assaults Upon the English Language

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Product Review: Amco Swing-A-Way Easy Crank Can Opener

I’m doing some reviews of items that have made my life easier, as I’ve had to adjust to having an Ehlers Danlos syndrome body.

I am not being paid nor am I receiving anything for writing this review, but if you click on a product ad and buy an item I get a % at no additional cost to you.

Amco Swing-A-Way 6090 Easy Crank Can Opener


Amco Swing-A-Way 6090 Easy Crank Can Opener

I can (heh) vaguely remember my grandparents having an ancient wall-mounted Swing-A-Way can opener in the kitchen of their farmhouse. Amazon has those too, but I figured it would just be another object that I would accidentally give myself a black eye on (latest object: hairbrush) so I got the portable, handheld version. It is really easy to use – the crank really takes pressure off of hands that hurt.

Just look at this thing:

This is the can opener I would want for the apocalypse. I’d push it in my cart, along with my tarp and my ad hoc oil lamp, as I walked thru the grim and birdless landscape:


The Road

But for now I keep it on my counter top, because it’s too big to fit in my utensil drawer.

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Product review: Peel N’ Stick Body Warmer

I’m doing some reviews of items that have made my life easier, as I’ve had to adjust to having an Ehlers Danlos syndrome body.

I am not being paid nor am I receiving anything for writing this review, but if you click on a product ad and buy an item I get a % at no additional cost to you.

Grabber Adhesive Peel N’ Stick Body Warmer – 12+ Hour (Box of 40 Warmers)

Grabber Warmers Grabber 12+ Hours Peel N’ Stick Body Warmer, 40-Count

Hmmm 40 sticky hotty things for $32 or 9 sticky hotty things for $18? Which is the better deal, hmm, haha.

ThermaCare Air-Activated Neck, Shoulder and Wrist HeatWraps, Powerful Pain Relief Plus Deep Tissue Relaxation – NEW shape for improved fit – 9 HeatWraps


Granted, the ThermaCare warmers are bigger, but the Grabber warmers work just as well, I’ve found. I’m glad I stocked up when I had the $$.

I stick them on the inside of my shirt, because I have shoulder pain all the time and my classical ehlers danlos syndrome skin + adhesives is not a good combo.

Sometimes I use 2 at a time because I invariably

a. turn a t-shirt inside out

b. think “ok it’s my right shoulder I want it on” so I stick the warmer on the right side

c. turn the t-shirt correct side out and put it on

d. curse, because now that the shirt is correct side out, the warmer is now on the left shoulder

e. take t-shirt off, turn it inside out, put an additional warmer on in the correct spot

The label says not to use while sleeping, but I’ve fallen asleep with them on. Probably not the safest thing to do.

Ablaze

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