Once spent most of the past 3 years in bed, without anyone knowing…

google will tell you. just enter PMDD and press search

This is interesting, thank you for clarifying. I felt ok-ish on 50 micrograms of oestrogen but whenever I try to increase it, my mood plummets. Unfortunately my joints ache horribly on 50 so I feel like I can’t win. I do remember reading a post on Reddit from a young woman who had the same experience as you - it only worked with no add-back hormones - and she ended up having an oophorectomy and accepted the risks that came with not taking HRT.

@HelenHywater I haven’t heard the term ‘functional freeze’ but I’m going to look it up now as this sounds like what I do. It doesn’t help that I only ever feel truly safe once I’m locked in my flat, the blinds are shut and it’s very quiet (so late at night).

Could it be ptsd or C-ptsd OP? Have you considered that angle? I recently had a burn out which sounds a lot like your situation. I just had no energy to do anything at all. Had to stay in bed all day. Burn out is more common for people with Cptsd.

I also read about functional freeze which is a trauma response for some people who have (C) ptsd. Basically you appear outwardly functioning to people you come into contact with but the rest of the time you take refuge in bed or mindlessly watching tv, scrolling social media etc.

I used to do that when I felt depressed and due on/on my period. My hormones hit rock bottom and I felt overwhelmingly tired. I was told to go for an hours walk straight after the morning school run,and get some sun on me. It works, because I've stopped doing it.

Treatment can also be psycho educational, and you can follow that path with so much more confidence when fully diagnosed. Its not a bandwagon, its progress. Most ADHD/ASD and autistic women over 40 are undiagnosed! Medication has its place but to understand your own mind, educate yourself on strategies and live life how you need to live it rather than how you feel you are expected to be a lot more empowering than medication.

Read, read and read some more, then take control. :) you can do this Xx

@GGenAvocadoOnToast I tried....After 5 blissful months of hormones turned off, they put me on tibolone , all physical symptoms of my PMDD returned within 3 days and day 5 my head was back to a dark place. By day ten, i struggled getting out of bed. My husband said the change was that sudden and significant, it was like " someone had fed me after midnight!" 🤣🙈 They are in the bin and they are not coming back out, and i will manage what they are intended to manage with diet, lifestyle and supplements. Give me unadulterated clinical menopause any day, over how women like us react to hormones!!

Sorry you’re going through this too. I was told they wouldn’t give it to me without HRT because it’s necessary to protect bone and cardiovascular health.

I'd also like to know this. Been on prostrap injections for 6 months and using daily HRT tibelone alongside. I still feel like I'm battling PMDD symptoms sometimes. Am I better off going without the HRT?

Op you sound a lot like me. I have ASD and really struggle with household chores, organisation, general motivation. At times when I could in the past I would easily just spend time in bed and would have low energy, it’s really easy to get into that pattern. Now I have DC and I hold down a professional job. I need the routine to function. Im on mat leave at the moment and have planned things for each day so I know what I’m doing otherwise I’d fall back into the pattern of doing nothing and wouldn’t be able to do anything. Can you start small by planning a weekday trip on the same day each week to a cafe or for a walk and build up from there? Get a routine going.

Bless you
I hope you are ok 😘
your description of how when you worked 4 days you spent the 5th day recovering… this is me it’s exactly what I do every week….
I also feel total lack of motivation when I have time off work and nothing planned… I think it’s just where we get ourselves into a routine and have that purpose when working etc.
Im on a unplanned week off this week, I had to take due to an infection outbreak at my work It threw me out a little to begin with as it’s out of routine for me not to be at work… at start of week I did nothing and just over thought everything (work hasn’t been a nice place recently) I ended up making myself feel drained… at the same time I didn’t want to waste my time off… so I decided to set myself
a daily to do list, it’s not too much but I find that it makes me a bit more motivated having that plan.
you say that you have fallen a bit behind with household tasks. Why not try setting yourself a small daily task and see if that helps…
😊

Sorry to hijack, again so similar to me... Did you not take add-back HRT with prostap? Are you still on it? I'm on a similar drug for PMDD, with HRT, but it's just making me feel flat 100% of the time.

I'm very much like this OP but the gp won't do tests. I do work but on my days off and days when I don't have my children I sleep most of the day and then the night. I'm always always tired just easier when I'm distracted by something that keeps me awake. 💐

PROSTRAP! NOT PROSTATE TREATMENT 🙈🙈🤣🤣

Hope you don't mind me chiming in ,with some lived experience of similar, i didn't stay in bed though, i used to just sit and stare at the news. For hours and hours and hours.

I wasnt living, until two things happened. I started prostate treatment for PMDD, sacked off the anti depressants, and was referred for assessment for ADHD. Then it all made sense, i could see, i was seen, i could hear and was heard.

I cant tell you how life changing the prostrap was. And how being able to understand my brain has set me free.

Please put the HRT in the bin or keep it there if it already is. The nature of PMDD is that u likely wont ever be able to tolerate it.

Please contact your GP ( you can do it all online, go to surgery website ) and ask for a referal to the wellbeing team. And do consider self screening for ADHD and asking for a referal for assessment. You sound classic!

And finally, connection. You need connection. Join something local close to your heart. You are not alone, so many of us are on a similar journey, but we are all like you and hiding, until we connect :)

I'm so sorry. Can you Google for abuse related charities in your area? So many of them offer free counselling and this can be so helpful if you have struggled to cope with the effects of this kind of trauma. I've seen my mum go through it and it's really devastating, it just affects every single aspect of life. And yes it is a form of PTSD and it will keep being reactivated if you have to see your abuser. I'm sorry because that is so tough.

If you are on universal credit, please ask for a conversation with a disability employment advisor. Their guidance isn't just work focused.

Also I am interested in how you function during school holidays.

Can I just say that two things strike me reading this thread:

One; how many people go through difficulties in life without anyone knowing. And it demonstrates how no one should judge anyone else as they have little idea of what goes on behind the scenes.

Second; that Mumsnet is not always the nest of vipers that so many recent threads would have you believe. Some really good and genuinely helpful advice on here.

I hope it all helps a bit anyway op and to know that you are definitely not alone 💐

And take it with a drink that is high in vitamin C like orange or cranberry to help absorbtion

Hi OP

My life is similar. I have no energy for anything but tests don't show anything physically wrong. Just doing the washing up tires me out. I hate the city I live in. I also spent years in abusive relationships and too and the memories are there every day.

The fatigue and complete absence of motivation are always there regardless of my mental health. Everything feels, and has always felt, overwhelming, even when I my mood is good. As a child all I did was daydream, could never focus on schoolwork as it was too much. I used to cry every day before school because the thought of having to sit quietly and focus was unbearable.

It took me many years to complete my degree because I kept dropping out.

I was recently diagnosed with ADHD, on the quite severe end of the scale, and am waiting to start medication. It will be interesting to see if anything changes. From the reading I've done, it seems that horrible fatigue like ours is not uncommon among people who have it.

I've just (today) arranged to meet a psychologist for an EMDR consultation as I've experienced quite a lot of trauma. I feel hyper-vigilant all the time so I suspect this is using up quite a lot of my energy. Feeling on edge constantly is exhausting. Do you think this may be a factor?

I'm not going to make a load of suggestions because I don't have the answers, and I'm still trying to figure it all out myself. But I wanted you to know I get it and you're not alone with this.

Did you get a print out of your blood work? It might be worth comparing your readings against the Nice guidelines as the NHS is notorious for having much higher thresholds for treatment. It means you can be left to suffer with the message that nothing is wrong, when in other countries you’d be treated at the same level.

If iron is low, supplementing is important. It can be more effective to take it every other day as our bodies can be quite resistant to absorbing the stuff.

I was in a remarkably similar place to you some years back and interestingly I'm also thinking now about ADHD. My partner dropped my son at school and all I had to do was collect him; later on all I had to do was collect him at 7 pm after chapel services as he was a chorister. The number of times I wanted to actually attend the service at 6 and didn't make it in time because I still wasn't dressed ... (my partner had a long commute and was home later).

I also tried antidepressants without much benefit - took the edge off anxiety but blunted everything else really.

A big contribution to improvement for me was an amazing charity in Oxfordshire called "Restore" - amongst other things they run "recovery groups" which are activity based centres you might attend regularly one or two days a week, doing things like gardening, cooking or crafting. Hours typically inside the school day. You can be a member or you can volunteer to help (or indeed progress from one to the other). Initially I struggled to get there, or sometimes made it only in time for lunch. With their support I progressed to a small amount of self-employment which has subsequently become much more substantial.

I also have an amazing friend who still has me pencilled in one day a week (when we're free - now we both have children at uni and sometimes things come up). She would take me out for a walk with her dog, or help me problem solve or sort clutter in my house. (The latter is very much an ongoing project) Or sometimes just talk to me on the phone.

Routine has turned out to be crucial for me - I would do better if I was employed I think but maybe one day I'll employ someone else to do my admin :) Some of the things that so often overwhelmed me when my children were younger were the basics of washing and cleaning. Once I managed to sit down and think, what day do I want to wash the sheets? When should I do clothes? (weekend for the latter to turn around school uniform!). Fixing days in my head so that I thought, yes, today I do X, helped me to gradually have weeks where I managed at least one thing that needed doing each day.

If you would like to try someone giving you a call during the morning just to say hi and how are you, or if you happen to be in Oxfordshire, please send me a message!

Hey OP, I don't like to be so critical but I really have ZERO faith in our NHS when it comes to testing adequately.

With regards to iron, they think very low levels are ok. There are hundreds of people online who are incredibly ill and depressed with low iron that the NHS says is 'ok'. The other important marker is Ferritin which looks at the iron storage levels. Measuring this is important. Again, the NHS use ridiculously low levels as acceptable.

I'd want to know about magnesium, vitamin D, all electrolytes and B12 levels.

I've just bought a home testing kit today for all this.

My son is Autistic/ ADHD. I was reading last night that there is some research to say that there are often deficiencies in ADHD people in Zinc, magnesium, vitamin D and Omega 3.

It may just be worth really investing in testing again yourself and then joining online groups who will tell you what healthy functioning levels should look like ( not what the NHS says!).

Another thing - many people who are Autistic/ ADHD have POTS ( a problem with how blood is pumped up against gravity) It can exhaust you. I have it. Trying to drink at least 2.5 litres of electrolyte water and increase salt in your food every day might be worth trying.

We paid for a private Autism assessment for my son as we were getting fobbed off so much by the NHS. It has made a huge difference to his well being just knowing. It's a massive validation.

I took in a solitary 'found in a box' foster kitten just as my daughter left for a year abroad (I was very anxious about her going -- far more than she was, I think). Idiotic kitten antics kept us busily distracted for weeks.

During lockdown I was stuck away from family for nearly 9 months. Cat fostering helped hugely in preventing me going nuts.

This is a good suggestion, but if it's too much contact right now, they are often crying out for kitten fosterers to take litters into their own homes and raise them till they're old enough to adopt.

I can greatly recommend kitten therapy. You do need a spare room and a poor sense of smell though. Kittens are whiffy.