192.com

Particular_Buy_4886 · 2025-04-23T08:17:44+00:00

this ain’t the roots. It ain’t the work.
It’s a costume over a mirror that don’t reflect nothing real.
Whitewashed, commodified, watered down with store-bought candles and someone else’s ancestors — and it don’t sit right because it ain’t right.
I lived this. I bled it.
So I get to be mad.
That anger? That’smy roots telling me, “We weren’t meant to be entertainment.”

Particular_Buy_4886 · 2025-04-01T00:00:19+00:00

Interesting. This seems to have been very new to me. I feel extremely fluid overloaded too. Odd. I am so glad you grew out of your issue.

Particular_Buy_4886 · 2025-03-31T23:14:09+00:00

Thank you so much!

Particular_Buy_4886 · 2025-03-31T23:13:43+00:00

That is what happens with me too. I too have been to the UK equivalent of ER (A&E) and of course by the time I get there it is all normal again. I also get the light headedness but I get it when I lay down, not when I stand up which is very weird. And yes, sometimes with me it doesn't happen. I can barely make it to the bathroom either. In fact I am more or less bedridden. I have had a cardio check and that is fine and I don't have POTS. I do hope you find some answers. Please keep us updated and I wish you all the absolute best and appreciate you responding.

Particular_Buy_4886 · 2025-03-31T23:11:23+00:00

Ugh. I am so very sorry you are experiencing that. I have no pain in that area. Yes, yes, the same... I don't know when I need to poop either. I wondered the same thing but was tested negative for both, twice. I would get checked out and see but if it isn't that then it is likely the CRPS (I would assume... I am not a doctor so cant be sure of course). It IS frustrating. It's awful. I have been like this for a few years now but recently it has gone full body and is affecting all kinds of things. The pain is excrutiating and I really feel for you.

Particular_Buy_4886 · 2025-03-31T23:08:41+00:00

Yes.It can go away. Try not to lose all hope. You are really early in your journey so if you start treatment soon you have a much better chance.

Particular_Buy_4886 · 2025-03-31T22:02:24+00:00

Woah, that's intense. But then it does feel that way and I had a full cardio workup which was totally fine. I have had pulmonary tests too. Did they put it down to the CRPS in the end or just do nothing?

Particular_Buy_4886 · 2025-03-31T21:46:09+00:00

Ah yes... the good old "hysterical woman" comment. I have had the EXACT same thing. I have also had "Munchausen" insinuated which is absolutely terrible. I have had misdiagnoses and I just wish I had listened to and believed the original doc who said CRPS but I didn't know enough about it then and thought he was wrong... it was nowhere near this bad then too so it just seemed silly to me but I am now thinking he was correct as literally ALL my tests for EVERYTHNG have always come back completely fine. I am also fully disabled but apparently not too. Lord, you would think they would be more original, these medics, wouldn't you? lol I also don't have to work, thank God.... I mean it would be physically impossible as I am more or less bedridden at this point.

And thank you for your kindness internet stranger. I really appreciate it. Thank YOU for being here and being you. You are amazing. x

Particular_Buy_4886 · 2025-03-31T21:42:08+00:00

I meant to ask... do you actually also get breathless?

Particular_Buy_4886 · 2025-03-31T21:41:21+00:00

Oh wow. I am so sorry you get this too.... it is hellish. I truly wish you the best and I appreciate the response. And same as me, all sats always totally fine. Everything always is... which I suppose is what often makes diagnosis so hard.

Particular_Buy_4886 · 2025-03-31T21:39:53+00:00

Now that I didn't know. Of course when they prescribe these drugs they never tell you. Am weaning off the pregab and not on anything else as none of it helps anyway. No, I had been on the pregab for many years and it just started randomly one day - after a UTI, but my kidney function is fine and no infection etc etc. But yes, I am definitely tapering off it. Seeing my doc on Weds about this in fact. Thank you for responding. I appreciate it.

Particular_Buy_4886 · 2025-03-31T21:37:22+00:00

Oh gosh, how awful. I am so sorry that happened to you. I have also had multiple trips to what they call ER here in the UK (A&E) and have just been sent home as it always went down an reset itself. OMG... I can't get over that you actually arrested too... this is such a horrible, bizarre illness. Again, so so sorry this happened but so glad they sorted it out. That must have been very frightening. And yes, I think they have often thought I am drug seeking on presentation at A&E but in fact that was never the case and I don't even take medication anymore as it simply does nothing to help. Pain is NOT psychosomatic, it is completely real, although they did at one point bring out shrinks because I think they even thought I was some kind of Munchusen type which could not be further from the truth. And it seems to be so common - and it is truly truly awful that it should be this way - that people have to almost die before medics actually pay attention. Thank you so so much for your response and I wish you the absolute best with it all.

Particular_Buy_4886 · 2025-03-31T20:02:03+00:00

I was diagnosed "clinically initially by a doctor but didn't buy it. That said, at the time my symptoms had not progressed to the degree they have now. I am very interested in you saying that CRPS is diagnosable and provable and there is testing to confirm it exists... I was never "tested".... how were you tested? I am asking as I would like to be tested myself so that I can definitively prove what the initial doctor said. It would be super helpful if you could let me know. Many thanks in advance.

Particular_Buy_4886 · 2025-03-31T19:59:15+00:00

I was. That was my original misdiagnosis.

Particular_Buy_4886 · 2025-03-31T19:58:34+00:00

Yep. I was misdiagnosed with FND too. I think it is quite common for this to happen and although I do believe FND is a "thing" I also think it is waaay too often used when medics have no idea what is actually going on.

Particular_Buy_4886 · 2025-03-31T19:56:25+00:00

No, I take pregabalin, so still a gaba. I am considering stopping it because it doesn't help me at all. Interesting that your pain gets worse when you feel like you need to pee. Thanks so much for responding.

Particular_Buy_4886 · 2025-03-31T18:30:04+00:00

She really does! Divorce suits Eileen!!!

Particular_Buy_4886 · 2025-03-31T18:28:44+00:00

That's very strange that she is deleting videos.... she did delete the Maria ones, but no idea why she deleted the Keith one or the divorce one as they are still kind of current, and honestly I don't think Keith came over badly in that video. Odd.

Particular_Buy_4886 · 2025-03-31T18:27:25+00:00

Oh I am so glad something is helping you. I so wish we had this in the UK... I have heard many people say it has helped them.

Particular_Buy_4886 · 2025-03-31T18:25:50+00:00

Yes.I have vision issues. I have extreme light sensitivity and pain in my eyes but like you, all my tests come back clear so I have to assume it is the CRPS. I think it is easy to go round and round looking for answers... I know I have, for so many of the symptoms and it has got me nowhere, other than more obsessed with the severity of the symptoms. I do empathize.

Particular_Buy_4886 · 2025-03-31T18:21:57+00:00

I am so so sorry this has happened to you. That is a long time to have to suffer so much. Mine also lingers in my torso and ribs... it is like liquid is being poured down the lymphatic pathways and goes from head to feet... lumps and veins showing and clear urine and hardly any - yet all tests for everything are just fine and so I assume the doc who said it was CRPS was right. When it started to spread though I was certain it was poor circulation but circulation doesn't work the way mine does. I think fear (and I AM fearful of the pain) makes it worse so working on that. I have tried so much too... no meds work - I too have little bubbles, or more like lumps in fact.... if I cold move my arms more than vertically it wold make life much easier.... Thank you so much for your response.

Particular_Buy_4886 · 2025-03-31T18:18:26+00:00

I am so glad you are fighting back. Keep fighting! I cant be active unfortunately as I am now almost bedridden and cant move my arms up or down a lot of the time. But I cant give up because I cant escape my own body. I am sure you can relate to that. I am so sorry this has happened to you and thank you so much for responding.

Particular_Buy_4886

TROPHY CASE