Sleep and mental capacity

[Burnley1234]

I have posted two other posts today keep forgetting to add things so sorry for posting again, anyone else suffering from absolute bad memory loss or foggy muddled head,plus severe sleep psychosis, I should have no problem whith sleep I am on tramadol, lyrica 150mg, venaflaxine150mg, bile sequestants, ensure powders, I am also smoking weed for pain an sleep, I am allergic to penicillin and any other cillins, not allowed ibrupofen or any anti inflammatories, my mental state is going severely down hill I'm massively depressed, in major joint, nerve pain, seizures,ruptured ear drum still not from back after two years have glue ear an major problems whith mouth accesses gum abcesses,also any touching or pressure absolutely anywhere on any nerve is causing horrific pain despite the medication just had spyro test that's come back whith massively reduced lung capacity, simply gasping for air sometimes cannot walk inclines and steps just cannot do, my doctors are shocking the consultants only deal whith what is relevant to their department and simply will not take systemic or lupus into account, my head is fried anyone can advise please x

[Lisalou19]

Hi Burnley1234, I don’t wish to offend you In anyway with this comment, but I think to start with you must stop smoking weed! For some people taking cannabis in this form can induce psychosis. Maybe you could try it in a cbd oil form.

I’m saying this because I have a brother with thyroid disease and smoking cannabis has sent him to a mental hospital on more than 1 occasion. Whilst it doesn’t affect everyone is the same way , you maybe at risk.

I take amitripulene for sleep and metazapine which is an anti depressant. Taken together I am getting more sleep than I was. X

[Burnley1234 in reply to Lisalou19]

Thanks lisalou, I understand what your saying about cannabis but I was on anatriptoline max dose noratriptoline, and metazipine for twelve months did not work at all so although I appreciate your reply I have been smoking weed for 30years I have had to give up alcohol, food , food through bile malabsorption,sweets puddings, girlfriend, going out, sex, being around people family because of autoimmune disorders and wiped out immune system so hope this goes some way to helping you understand I have **** all else but I appreciate your reply and kind thoughts ps hope your situation better than mine feel selfish not asking so yeah thanks

[Lisalou19 in reply to Burnley1234]

🙁 awe it was a hard read your reply. I guess what your explaining is maybe how my brother feels at times.

A lot of what you’ve given up, I can relate too. Do you have anyone you can talk to about what your feeling and going through?

I am just waiting for cbt therapy on the nhs for my sleep issues. Without enough sleep our bodies are not getting enough rest to solider through. Have you asked your gp for help?

Your so like my brother, he will always ask how I am once I’ve listened to him 😊. Very kind of you . I am ok

Xx

[Lisalou19 in reply to Lisalou19]

Also have you tried a meditation app. I use an app called calm. It really helps, takes some battling to stop my brain thinking 100 miles an hour but in the end I get there and it’s really soothing and calming. It’s worth a go x

[Burnley1234 in reply to Lisalou19]

Thanks for your kind words and I don't want to sound blunt I'm not that personality just a horrendous time and I hope you don't mind but I have read your posts and I almost don't want to say but what you have described how your symptoms are affecting you and I have all of what you have the rashes I get are single spot guttate psoriasis, they hurt like hell an itch like a nettle sting, so there's a possibility for any rashes,I also know my own personality is changing just cannot keep track different pains, new ones old ones, I also have major problems whith feet legs pins and needles major panic attacks an I am a strong,strong person but inside I am weeping, and I cannott comprehend how your dealing whith it, I have no family long story dad died when I was one, mother ****** off when I was 15 result homeless at 15, then care an etc so no, no one but **** it life goes on I will beat this to some degree gotta win a battle and all that, so how the **** do you cope, I am lonely, people just don't want to hear why you don't wanna go out why your poorly why no girlfriend, why you cannot work you look alright to them so lisalou if you feel how I feel what now, how do you fill your time when your ill, and I don't know what to say to you when I know your going through the same, I am brave, but I think your braver, an what is your diagnosis or is that rude to ask an sorry to unload but head fried and you out of any ****** can understand so yes I respect what you say and appreciate what you say, an I wish knowing all this pain an illness I could take some off you, all I can say is your nature is still shining through an you are caring and thoughtful more so than me x

[Lisalou19 in reply to Burnley1234]

I don’t think we do cope, we just get by and make the most of our better days although they tend to end with exhaustion. I’m currently diagnosed as UCTd whilst they try and figure it out.

I have 3 children so to a certain degree I get through most days because of them . These illnesses do bring on a sense of loneliness, healthy people generally just don’t get it.

As you know a lot of our suffering is invisible to others. Have you looked to see if you have any support groups nearby? Have you asked your gp to refer you for counselling ? Sometimes just talking things through can give you a sense of acceptance or you maybe able to search within better coping strategies.

I’m sorry this is happening to you , hopefully in time they can sort your medication and give you a better quality of life x

[Paul_Howard Partner LUPUS UK]

Hi Burnley1234 ,

It sounds like your memory loss and fogginess are symptoms of cognitive dysfunction, more commonly known as brain fog. We have an article about this on our website which may be of interest to you - lupusuk.org.uk/coping-with-...

I'm not familiar with the term 'sleep psychosis', are you able to describe it more? Have you discussed this with your doctor and asked about getting a referral to a sleep specialist? If you are having bad sleep it is likely to contribute to worse brain fog, pain and mood.

If you are not receiving satisfactory care from your consultants at the moment then perhaps you could ask your GP to refer you to a consultant with a specialist interest in lupus? If you'd like to let me know what area you live in then I can provide you with information about any specialists we know near to you.

[Lupiknits]

This whole thread has me in tears, and I can offer nothing but a virtual hug from a stranger.

The only thing I can think of is the Samaritans, if you haven’t tried them. They’ve listened to me when I’m in pain and just desperate x