Jump to content

Hanging Around...


Recommended Posts

okay folks...

just wanted to give a hello & let you all know that i'm hanging around but just a bit hindered in my typing/replying at the moment. and there have been so many interesting threads that i'm wanting to chime in on!

i crashed fairly hard on wednesday this week. pretty much relegated to bed on wed & thursday. a few options of causation include my getting too gung-ho about starting swimming/lifting last week (but it felt SO good while i was actually doing it!) or perhaps starting melatonin last weekend. i took it for about 5 days before the crash with no problem & some benefit. i haven't taken it though since tuesday night just in case. or perhaps none of the above & just one of those things. i think it's too long after my move for it to be from that, and i definitely haven't been too overzealous about unpacking and whatnot.

late yesterday i started to feel a bit better in terms of the autonomic crash, but then some other fun ensued. i dozed for a bit yesterday afternoon & woke up with pretty icky lower back pain...not a norm for me. it has gotten worse since. along with some weird shooting/tingling stuff. i have a decent pain tolerance & it kept me up last night until around 4am (although i realize that it was also my 2nd night without the melatonin.) i can't get comfy at all which is what's making the typing thing tough. i wrote one lengthy email over yesterday & today and am having to fight tears as i'm sitting here typing this b/c i'm hurting big time. i've taken tylenol but don't have anything else that i can handle med wise. and of course don't have any docs here in cleveland yet (other than a urologist!)

i'm SO frustrated and while i'm just trying to ride it out and let it get better, i'd welcome any suggestions too. i've done heat & cold to the degree i can handle & that doesn't seem to help. autonomic-wise i'm almost back to where i was tuesday....except for the pain thing setting things off. ggggggrrrrrrrrrr.

and while i'm not quite at a freak-out point, knowing it won't help anything one bit, of course it's in the back of my mind that school starts in less than two weeks. not so much a concern b/c i think the current issue will still be an issue but b/c of the reminder of my being so succeptible to being out of commision at any point.

okay, i'm done with my whiney rant. my initial intent was to let ya'll know that i'm still around & am just sitting on the back burner with my replies, but it turned into a bit of a vent. so...thanks for listening. and if anyone has any grand advice to offer, i'm all ears.



Link to comment
Share on other sites

Hi Melissa!

Please take it easy and take care of yourself. You know my advice when anything unusual happens is "get to the doctor." There are always walk-in clinics and such until you get established with a permanent physician.

I hope you are feeling better soon!


Link to comment
Share on other sites

oh melissa,

i think you are gonna have to cave in on this one and see a doc...i don't know.

i hear you on 'lurking' but not typing, i do a LOT of that and sometimes i think i will go nuts! b/c i have all these reposnse going in my head.

i'm not feeling so hot at the moment myself,

so gotta go...i hope you and both get some of that darn thing called sleep tonight. the world would be a lot better that way!

hey, if you haven't already...i wrote a long post today under the EDS/POTS thread by MM...check it out, k?

later alligator!

keep us posted.


Link to comment
Share on other sites

Hey Melissa, Do you know what specifically happened to trigger the back pain? I see you've been doing alot with swimming and moving... I was just thinking that if there is a chance that it isn't an injury, it could possibly be a bladder infection. With swimming and stress, and I think I remember you do intermittant caths? that might be something to consider and make sure of. Also, you could try taking one tylenol and one advil together every four hours as it sometimes is a little more effective for muscular pain. Not sure if you can tolerate advil, but I thought I'd throw that out there for you. I'm sorry you are having such a tough time, hope you'll get yourself checked out just in case! Take care Laura

Link to comment
Share on other sites

Guest Julia59


I'm sorry to hear your not feeling well. Could it be anything to do with your kidneys? Or do you think it's a bad spell with your back? You may have to go to some kind of clinic. I just hope it passes---and it's just one of those things. I'll say a little prayer--------- ;) .

Take that unpacking thing one day at a time----very slow---and not until you feel better. I think you know that though------ :)

Heat for muscle pain----and if you suspect some other kind of pain, use ice. I find that Ice helps me a great deal-----especially very cold drinks as it gets the anterior part of my C-spine and cools things down, and also helps with the swelling. It really is a quick fix----but so darn temporary. I can't tolerate pain meds---so it's tylenol extra strength for me other then the ICE.

Listen to your body---rest, rest, rest as much as you can.


Julie :0)

Link to comment
Share on other sites

Dear Melissa,

I am so sorry you are in pain. You've asked for suggestions...and below are my wild cards. I have a few pain protocols that have worked in the past sometimes. You know, with POTS, there's no consistency or confidence in any treatment... Life is so hard but I'm so thankful to still have it. What a conundrum.

Two things I sometimes do:

a) hot caster oil packs. I've read enough to be personally convinced that electric hot pads are contraindicated for medical healing intervention because of the EMRs and their effect at the cellular level. However, I do use a microwave heating pad. I soak cotton flannel with organic caster oil, lay it on the sore area, then put saran wrap (several layers so it doesn't tear) over the flannel (so the oil doesn't get on the hot pad or bed) and then put the hot pad on top. It should be confortably warm. And I let it stay on until it cools down. It usually helps.

:) coffee enemas. (Can you believe I'm saying this? It's for pain not related to GI motility issues.) I follow the Gerson protocol, and it is a great relief. If you are interested in finding out their approach, please refer to their book (available on their website at www.Gerson.org) or e-mail me and I'll give you the details. It's really easy, and has been very helpful.

Hope this wasn't too blunt. But pain is pain. I'll be praying for you tonight.

Link to comment
Share on other sites

thanks for asking laura...i was just about to post and you beat me to it B)

i'm not where i want to be, but am much better. POTShole-wise i'm out of my crash, and my back is at least heading in the right direction. since i have no idea how i did something to my back (as the pain started 2 days after my last swim/lifting outing) i was getting a bit worried about the kidney issue last night but since i'm feeling better rather than worse today i'm going to keep it in the back of my mind but not jump on getting it checked out. knowing my body, i wouldn't be feeling as well as i am otherwise (other than my back) if there was an infection going on, and i don't have any other UTI symptoms. i'm still popping tylenol & still hurting, but there are positions i can get myself into comfortably, which is more than i could say yesterday. and i can walk on my feet rather than on my tippie toes, which is all that would work yesterday...

i've heard the advil/tylenol thing works well for some others too but can't do advil myself b/c of GI stuff...one probably wouldn't put me over the top but it's not worth playing with fire. i played with some heat & cold and it helps some. and i did sleep better last night, so that can't hurt anything either.

i'd never heard of the castor oil heat wrap but will keep it in the back of my mind. yesterday couldn't have tried it b/c couldn't have gone out to get anything, but i do have a microwave heat pack i use that is full of grains/beans/aromatherapy stuff. the coffee enema was definitely a new one for me but i'll never balk at suggestions. probably not a good idea for me though as i have ulcerative colitis - it's under control at the moment but my GI tract is just pretty darn sensitive from top to bottom.

as you can tell, i'm avoiding the doctor still, although if i'd been worse rather than better today i had found an urgent care clinic to go to, so i wasn't being TOO stubborn.:-) as it stands i have an appt on wed with my old GP at my parents so as long as nothing's worse between now & then i'll be able to run things by her. my mom of course brings up the countless number of times i've fallen over the years & wonders what i've managed to do to my body...not a null and void point but not something i can be losing sleep over.

and yes, i'm resting. i have been anything but overdoing it on the unpacking (keep hoping the boxes will just unpack themselves & haven't touched a thing at all since monday.)

soooo....now i that i can be in a comfy resting position you'll all be subject to more of my ramblings....lucky lucky!

thanks for the support & suggestions...

:-)melissa, the sunfish who is a bit sunnier than yesterday but not quite swimming around in her fishbowl yet

Link to comment
Share on other sites

hey melissa,

i am so glad that you are feeling a bit better today...B) i know it isn't ideal, but it's always a pluse when things don't take a turn for the worse...especially over the weekend in a strange city!

i hope you can wait until your pcp appt. on wed. as taht will probably be much more productive anyway...at least it is someone with a clue! B)

more later when i can see above water...another sleepless night last night for me. i may lose my sanity soon. (okay, i know my sanity was questionable to begin with!)

anyway, take care, and i hope you start to feel a bit better each day and can just rest/wait it out a bit. and chug tylenol.

later alligator,


Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

  • Create New...