dizzyallie

Yep xhale I hear u. Ive had CFS 11 yrs now, Pots for 4. I was too at the time of my pots diagnosis to try move as much as possible otherwise I would decondition fast both cfs wise and dysautonomia wise. Which is **** hard when u feel so sick! I don't sleep in the day. Probably at most if I lay its not beyond 40 mins. The rest of the time is either sitting up on bed, in recliner, on lounge or wandering about. I feel your frustration, at times u have no choice but to lay.

I don't run fevers as such outofadream, but I do have body temp problems mainly overheating and sweating. Doc asked me the other day does my menstrual cycle impact but I don't think so. Hope u can get some answers. Sorry uve had this trouble.

Hi Christina, welcome. Its a great forum, has helped me a lot. I am in Australia, I often feel not many know of my conditions either. Sounds like u have been thru a lot. But at such a young age. You have a great attitude. Nice to 'meet' u

Sorry you're havin migraines. Not nice. I hope u feel somewhat better soon.

Dizzygirls ive been thinking of u and your daughters since I read your post. I had episodes of constant dizziness say 3 months at a time back in 2007 but one morning in 2010 I got vertigo, and have been dizzy ever since. Its only the past yr I can manage typing here more, or say reading, or looking at the tv for an hr. Mine too is concluded as brainstem dysfunction from the central nervous system. Many doctors have not been able to help. I kinda cried reading your post because I feel no one should have to deal with this. I try to keep as mobile as I can - I don't work, cant. By mobile I mean, practicing sitting up, walking about the yard. The odd trip to a shop. I do it because I afraid I I don't I ll get worse. That's all docs have advised. I have started seeing a psych to deal with it the past yr. Please give my best wishes to your daughters. I pray that they improve over time. And hugs to you too.

Hi dizzygirls - yes. Ive had constant 24/7 dizziness then I get bppv on top in episodes, for almost 5 yrs now. It is my main problem. And awful I know. I feel for you and your girls xx will re read others posts above when I can focus more.

I'm sorry your daughter has such issues and at such a young age. Lately I have developed being very sweaty, and am on propranolol 30mg to see if it helps. definitely something not right with the ANS. Sorry I can't help much more.

Interesting. Thanks for the replies everyone. Yeah I've never been this oily - mind you it is summer here in Australia but still. I have very sensitive skin also. Not exactly sure how to treat it at this point. I pop zyrtecs every now and then. Think allergies wouldnt be helping.

I'm wonderin if its related to dysautonomia, POTS, last couple months my face has been extra oily,itchy, pimples, I know its probably stress more than anything but just curious if others have noticed changes compared to how they used to be?

Yeah its obviously not that unusual then. Those beds would be great Dawn! just what you need. I was made to think it was very unusual. But no, it isnt.

Its hard artluvr I sympathise with u. I do very lil with my days. I try to keep moving when possible so I don't decondition but its still tough dealing with symptoms everyday.

Thanks TCP for the link, I'm trying to address my diet more. Probably finding gluten the hardest to cut out. Plus, cant afford to lose more weight. Keep us posted how ur going with it.

I too have moderate depression so can relate. Its tough trying to keep it in check I know. Thanks for sharing your experience.

Hi Sheri, I tick every one of your symptoms except falling asleep easily and weight gain. I have had CFS/ME for 11 yrs and Pots the last 4. I hope u can get dome answers. For me the dizziness, vertigo and fatigue are the worst symptoms.

Wow, good thing u were with a doc, and really the best place and time for him to see it. That's interesting,maybe related to inflammation? Prednisone can be handy from what I've heard.

Wow that is low katie far out. Yes I shouldn't be surprised then I guess. Bp seems to do what it wants. In the 60s I cant imagine how awful that would be felt.

Hi guys, I'm curious, do others Bp drop when they lay. I can be 110 standing then lay and it goes into 90s. When in hospital they kept checking it and scratching their heads. Any ideas???

Well that makes sense. Ta for the explanation. I should be using a chair, did couple yrs back but found it hard to do actual washing. Might have to try it again tho.

Hmmm cerebral hypoperfusion, doesn't sound too good. Ive noticed it mainly happens when I shower.

Its odd isn't it. I have wondered about it the past yr more so. Its like I'm in a dream state and not present. Must be somethin goin on in us hey? I don't like it tho, its almost like an aura of something...hard to describe. I wait til I come back so to speak.

Sure is annoying Stefanie, some days r worse than others...like today...and a wk of above 40 degree celcius here in Aust this week!!

Hi Bridgerunner, yeah oi isn't my main prob either. Funny u mention hyperhidrosis, ive been bad too. Its sooo many symptoms at play in the body. Ready to hit something I swear!

Thanks for the tips guys. Msy have elements of leaky gut, then again probably have elements of lots of things when I go looking. Had allergy test this morn so we ll see. Will look up klonopin.

Ive noticed a lotof pooling in feet lately. Today, getting bloods taken I looked down, feet all bloody purple.

Artluvr I know what u mean, I get these episodes only last few mins and mainly in the shower, when I feel detached and outside of my body. Like ur gonna have a seizure or somethin. It all feels quiet and odd. Ive never known what is tho.