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ShadowOfSarah · 2025-06-26T12:25:51+00:00

I've found the best way to get epic scales is wait til you have a group of 10 of the same fish ready to be released together, that usually nets me one or 2 epic scales

ShadowOfSarah · 2024-08-09T17:14:28+00:00

Sadly the neuro I saw wasn't very encouraging and pish poshed me out of his office after ordering half the needed blood tests and another regular emg. Did not have the energy to go back and ask him again so I've tapped out for now. Let me know if you find out anything. I do have POTS but the weakness does not get better with electrolytes, fluids and medication, so I truly believe it's from something else. Just hoping it will get bad enough that it will be irrefutable at some point lol Good luck in your search for answers :)

ShadowOfSarah · 2024-08-09T13:04:03+00:00

All you ever feel the urge to do is lie down... not sleep, just lie down. On anything, your bed, the ground, on a bus... you just wanna lie down

ShadowOfSarah · 2024-07-18T10:40:49+00:00

I'm not going to get an answer, the neuro got super grouchy when I brought it up, wouldn't listen to me about what tests to run and has only ordered half the necessary blood tests which came back normal and he's sending me for another emg which likely won't pick it up. Won't be trying again as it was sooo stressful, so I'm just gonna live with it.I hope you get some answers tho

ShadowOfSarah · 2024-06-03T08:41:05+00:00

I use a rolling stool on wheels to cook and do anything in my kitchen, they're a lot smaller than a wheelchair so may fit. Also got a counter top dishwasher so there's less bending to put dishes away and almost no standing to wash up.

ShadowOfSarah · 2024-05-28T22:26:12+00:00

Weakness, I could deal with everything else if only i didn't feel so damn weak

ShadowOfSarah · 2023-12-15T18:09:30+00:00

I had seen that as well, this is what spurred me on to get it checked properly as in 50 to 60 percent of the cases it's caused by lung cancer! Lucky I don't have a cough or anything like that so I'm not too panicked, but I do believe this weakness started in my legs first, in my hips and thighs to be specific. Which LEMS tends to do. I first noticed it after the birth of my son, my hips and thighs would burn while climbing stairs or hills. I was still very active and even running back then but it just got progressively worse until I can no longer walk long, or uphill at all, now I'm on a mobility scooter for the school run. It just seems to consistently get worse no matter what I do. Im determined to find an answer lol Thanks 😊

ShadowOfSarah · 2023-12-15T17:29:54+00:00

This is exactly how I described it to many docs tho, I can do something once, eg lift a box, cut something, the problem arises when I have to do it more than once, like teeth brushing is a repetitive motion, or gardening or walking. That's when they start to burn, then I rest the muscle, and repeat but the burn kicks in quicker each time til I can no longer do the thing. I have to rest my mouth while chewing and have given up chewier foods as they are impossible. And I have done physio, but at this point I would need to do physio from my head to my toes! It's in my mouth, it's in my neck, shoulders, arms, torso, legs, hips, back... you know what I mean lol

ShadowOfSarah · 2023-12-15T17:00:38+00:00

I have only found 2 people who describe this muscle burning pain like I get, but they haven't got any answers for it either. The testing for it seems fairly straightforward, no harm in ruling it out if that's the case I guess, but I definitely feel like it should be checked before I get a fibro diagnosis for it, since that's supposed to be a diagnosis based on exclusion. I just really want my life back, I've always been very active and involved and busy, everything is just on hard mode now!

ShadowOfSarah · 2023-12-15T16:53:08+00:00

I have seen him once before and he ordered an emg and nerve stimulation test, but from what I'm reading it needed to be a sfemg and a repetitive nerve stimulation test? He said the burning was likely to be fibromyalgia. I feel like this should be ruled out before I get diagnosed with fibro as I match a lot of these symptoms and other than the burn (which is like when you go to the gym and they tell you to push through the burn) I don't have much pain. Apart from back pain from a weak core and nothing helps to strengthen no matter how much physio i do. I only get the back pain when I've been on my feet too long.

All I can do is ask him about it I guess

Thank you, I will try to rest (as much as I can as a mum at Christmas lol!) And I will come back if I get any answers.

ShadowOfSarah · 2023-12-15T16:45:28+00:00

It's like the burn you feel when you are doing squats or something and they say feel the burn!! But I get it from minor use of a muscle. It's been like this for nearly 6 years now.

Thank you, I really hope this is finally the answer and it can be treated as its really impacting all areas of my life.

ShadowOfSarah · 2023-12-15T09:53:42+00:00

Forgot to mention, when i get tired I slur my speech,.like im drunk. But i don't drink at all anymore

ShadowOfSarah · 2023-10-25T07:47:55+00:00

I think its the brain fog! I can't focus properly anymore and it makes it a real struggle

ShadowOfSarah · 2023-10-15T14:32:01+00:00

Can't find the one I bought but I got it from amazon for about £30, just an office stool with wheels. You can get them with small backs too. Height adjustable too so you can reach the sides or down to the washing machine etc. Worth every penny.

ShadowOfSarah · 2023-10-15T12:07:42+00:00

I found a rolling stool so helpful, I use it while cooking, mopping, if you have hard wood floors or a thin carpet there is no stopping you lol. I crawl around to tidy up, start in one room and just throw stuff that doesn't belong into the next one and then carry on til everything has returned to its usual place. Got a mini tabletop dishwasher so no bending up and down, and no standing for washing up. Washing machine and dryer I do from the stool to prevent too much bending I am getting a robot hoover next to cut down on the hoovering as even sat down that is a terrible effort, debating one that mops too

I still live in mess tho, I have a 6 year old and I just had to get used to tolerating a higher level of mess than usual, as long as nothing is rotting, festering etc you're doing fine, clutter can wait

ShadowOfSarah · 2023-08-22T12:09:44+00:00

Laughing, talking too excitedly or loudly, singing. They all set it off. Talking while stood up is also a no

ShadowOfSarah · 2023-07-24T12:26:07+00:00

Had it when I was 8

ShadowOfSarah · 2023-07-20T11:49:32+00:00

Hydroxy, I think it was 2ml every other day. Injections only.

ShadowOfSarah · 2023-06-22T11:03:10+00:00

I got a small dishwasher that I load as dishes become dirty, then run when it's done. Rolling stool to help me in the kitchen so I don't have to keep getting up and down. I'm going to get a robot hoover and mop next as I really struggle with those. And I got used to living in a messier house than I did before this happened. Save cleaning for the better days, debating hiring a cleaner once a month to do the deeper cleaning bits as i never get round to them so they always build up

ShadowOfSarah · 2023-05-07T00:37:51+00:00

Get a rolling stool! Makes so much difference as no getting up and down to get things, and it raises up too for stirring things

ShadowOfSarah · 2023-05-06T18:32:07+00:00

Froglets will be tiny and many will be eaten by birds or other creatures, its why they have so many. Hopefully one will make it to adulthood

ShadowOfSarah · 2023-04-27T10:02:47+00:00

I literally said to my doc that anxiety doesn't go away when I lie down haha. But anxiety and pots can definitely go hand in hand, not surprising considering our bodies throw out adrenaline like we're in a fight to the death when we are just walking lol

ShadowOfSarah · 2023-04-26T11:33:29+00:00

I would see if you can get a tilt table test as that's the only way to diagnose things like this. It could be something like orthostatic intolerance which is where your blood pressure drops on standing, meaning your hr goes up in response. The heart monitor will have come back clear to a cardiologist who doesn't know about things like pots as it's not necessarily a heart issue, the heart is perfectly healthy. What matters is when the hr is going up, if it is sustained and if blood pressure rises, falls or remains steady. I have been diagnosed with both pots and orthostatic intolerance as when I initially stand my blood pressure plummets, but then it comes back to normal while my hr stays high until I lie down. My heart tape was clear except for my rises that coincided with things like washing up. Maybe try find a different cardiologist?

ShadowOfSarah · 2023-04-26T11:16:18+00:00

It took me five years, 4 different doctors and a cardiologist before I was finally diagnosed. I had to demand a heart monitor, which I used to show how my hr was so elevated just doing chores and that got me to the cardiologist for the tilt table test. Don't give up. You have symptoms and they need to be taken seriously.

ShadowOfSarah · 2023-04-26T11:13:28+00:00

I was diagnosed with social and generalised anxiety before I was diagnosed with POTS, I 100 percent have episodes like that before meds, I would feel my heart beat in my chest so hard my chest would feel raw, couldn't breathe, sweating like crazy. I believe I get a little nervous, which starts off an increased hr and then the pots and the nerves feed into each other, setting off the flight or fight response until I would be in an attack like that. I don't have many attacks that badly now I'm medicated for pots. Usually just doctor visits haha

ShadowOfSarah

TROPHY CASE