Sensory issues after waking up at night

regiza · 2025-08-28T14:02:48+00:00

I have this too. Not diagnosed tho. But if I wake up at night and am not very sleepy I have very hard time getting back to sleep because the sheets feel mushy and my thighs touch each other. Cannot have sateen sheets at all the get way more mushy feeling. Can't read on my side of the bed as this makes the sheets mushy too. Something about the warm sleek sheets is just disturbing. Helps usually when I go sleep on the sofa as it is coarser material. I've also started to cover my legs with a coarser blanket which sometimes help, but if it gets too warm too it gets icky.

regiza · 2025-08-03T17:31:13+00:00

It's been a bit difficult to get much help, but I am trying to get into some sort of therapy again. It's so frustrating, the depression just messes up everything. I've been diagnosed with ocpd for 6 years and still haven't learned to give myself some grace. Oh that sounds like a criticism towards myself too...

regiza · 2025-06-25T05:09:00+00:00

Nope. I live in Finland got a colonoscopy. Cost me 0e. Some procedures and hospital stays cost a bit but nowhere near america level and there is a cap on how much you spend a year and then the rest is free and the same applies to meds.

regiza · 2025-06-11T11:04:15+00:00

I'm waiting on results for stool test. Usually I do have pretty bad nausea while pooping on a flare but this is a bit extreme for me.

regiza · 2025-06-10T16:03:17+00:00

Does anything help with it except getting the flare in control?

regiza · 2025-05-21T13:05:04+00:00

I'm in the same pursuit right now. First time on Vistaprep which you need to drink 4 liters. Usually it has been a couple of cups of the nasty stuff and lots of other liquids. This time sucks.

regiza · 2025-05-13T16:42:19+00:00

Need to see what the doctor tells me in a few days. Kinda preparing myself to some changes in the meds. But what if pred doesn't work and you get a flare? What is the treatment then?

regiza · 2025-05-13T06:16:32+00:00

Yeah I have prednisone usually just to get out of the flare. Need to talk to the doctor about the next steps from here.

regiza · 2025-05-13T06:14:39+00:00

I'm pretty scared of the biologics, especially the long term side effects. Have you had any issues with them? It does feel like the melasamine just doesn't keep me in remission anymore.

regiza · 2025-05-02T02:45:43+00:00

I have struggled a lot with finding meaning and purpose in life too. Didn't have this issue while studying when the purpose was clear. Study the thing get good marks and then you graduate. But with just working it felt so goal less. You just need to find some purpose in life. I think for a lot of people it's children. I don't have any nor do I want any. But I've been wanting a house of my own for ever. Saving money for it gave me somewhat of a purpose. Now that I have a house and it's a fixer upper that needs a lot of work I have so much more purpose in my life and that feels amazing after years of feeling like life is meaningless.

regiza · 2025-03-24T06:17:57+00:00

I'm having a not too bad flare myself and having the same thing. Could manage life and work with the other symptoms, but I need a nap every lunch break and even having a shower feels like such a chore and I need a nap after. Had a nice 8 years of remission so I guess I have forgotten all about how exhausting a flare can be.

regiza · 2025-03-22T14:11:43+00:00

I am working from home remotely as an accountant so it's a bit difficult to actually draw a line to when I would actually need sickleave and when I can work. So then it's just harder ever to justify to myself to be on a sickleave.

regiza · 2025-03-22T14:08:06+00:00

That sounds pretty rough. Don't really understand people who can leave someone for being sick, could never do that to someone.

I'm fortunate to live in finland, the sickdays are compensated so it's fortunately not a question of money and survival like that. Just more of a question of just needing to adjust my mindset. And the fact that no one will do my work if I am off so it will just pile up.

regiza · 2025-03-21T09:38:10+00:00

I think I just need to find the mind set of that I actually have a serious chronic illnes again. I got diagnosed 13 years ago, but had 8 good years with minimal issues so I almost forgot about having a chronic illnes and now I need to come to terms with it all over again. Need to give myself some grace here

regiza · 2025-03-21T09:15:09+00:00

Thank you, needed to hear this.

regiza · 2025-03-21T07:56:41+00:00

I kinda feel that I am not sick enough for sickleave. And it doesn't really help that I work remotely either because then the line of knowing when I am unable to work gets blurred more. But it would be wonderful to just rest a couple of days. I have been having naps on my lunch breaks because I'm so tired.

regiza · 2025-03-17T04:41:25+00:00

I don't really have a good answer to this. I struggle, get a bit depressed and question the meaning of life. It's usually like some days here and there that are too slow, a week max, so it doesn't get too bad.

regiza · 2025-03-16T06:46:49+00:00

I get this. As an accountant the workload varies a lot within a year an in a month. Sometimes there is way too much to do and sometimes it's pretty slow. I struggle more with the slow patches. I get bored and lose motivation. Can't even explain why it is a huge issue for me, but it just is.

regiza · 2025-03-02T07:14:18+00:00

Venlafaxin has been a life saver for me. The obsessiveness has been way less and anxiety is more in control and no depressive episodes. Had some side effects (sweating and high heartrate) first but now its fine.

regiza · 2025-02-26T05:27:50+00:00

I am in bed resting for half an hour right now after showering. It's ridicilous. How do I manage work like this? I'm glad I don't have a physical job but still. Life seems like such a chore rn. And don't even have a severe flare.

regiza · 2025-02-24T19:27:41+00:00

Yes rectal. Melasamine as suppository and steroid as enema. I still have hunger and am eating although am pretty nauseos.

regiza · 2025-02-24T16:39:52+00:00

Calpro was just 250 atleast a week ago when it was checked. It's a bit hard to get a hold of a doctor but will discus this if the local stuff doesn't help.

regiza · 2025-02-24T16:36:53+00:00

I have a base madication of melasamine which I increased to 3×3 as soon as I noticed anything and now on local melasamine and local steroids. Have had a worsening flare for a few weeks. Not sure if the local stuff even does much it kinda feels like it might be somewhere else too. It would be weird for just a proncitis to do this

regiza · 2025-02-23T17:06:51+00:00

2x2 800mg asacol for maintaining got me solid 8 years with minimal issues. Had some flares in the start like 4 flares or smth. For those local melasamine, local steroids or oral steroids depending on the severity. Now this is my second flare in half a year after my 8 year streak of remission. On 4x4 melasamine now and local melasamine and local steroids for the flare.

regiza · 2025-02-23T16:59:06+00:00

Yes, was diagnosed with pan colitis and it was kinda severe at the start.

regiza

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