Print

Please login or register.
1 Hour 1 Day 1 Week 1 Month Forever
Login with username, password and session length

[Lclegg002]

Interesting about the ME/CFS association too as I’m having bloods
done next week to rule out other stuff but if all normal I’m thinking I may get this diagnosis. I tick all the boxes and found out the other day that twitching can be ME which I have had for months in my eye and brow, legs and arms. I also have ibs which is another symptom. Some days I can’t get off sofa, others I have more energy but have to pace myself as if I do too much I pay for it! However, I also have days where I am highly energetic and can get a lot done so I guess my question would be with ME is it every day fatigue or do you get bouts of normality?

[CrispyChick]

Thanks LClegg.

I've just had a long phone call with a friend and I've felt poisioned all through it. Now very fatigued. Maybe this part of me is ME/CFC. I'm not 100% convinced.

I can have days full of fatigue and others better too. But, so far, I can't see any pattern linked to PEM. Other than maybe the awfulness comes more from social interaction for me.

All my other symptoms are more identifiable as hormones. And they are not as constant.

I have read that a higher proportion of woman in their 40s are diagnosed with ME/CFC.

I've recently been diagnosed with PPPD. A dizzy functional neurological disorder. But that only covers about 25% of my symptoms. Again, common in peri woman.

So I'll probably end up with those two diagnoses, plus neurologist diagnosed GAD and that before we even look at my peri symptoms.

It's pure hell. It really is.

What have you tried? Xx

[CrispyChick]

I just want to add that this perimenopause is killing me. Irrespective of my poison and ME/CFC type stuff.

But...there lies a suspicion. I've had a horrific month. Longest cycle ever. Period just arrived. Feeling hideous with dizziness and mood and achy fatigue.

But...no poison today. I mean, seriously?!?! It's plagued me every single day of this long cycle. Surely that's an indicator it's hormonal.

Anyone know about FSH? Mine was 23. But that was 3 days before this period.

I do not know how to continue folks. 

[dangermouse]

You could view it as a sign that the volatility is coming to a head. For some they get a massive calmness after the last cycle so that could be forthcoming. It also could be because you were in chemical menopause and then the hormones have surged again so it may calm down a little to how it was before if that is the cause.

I am currently looking into pro metabolic diet to support the thyroid/liver/hormones better. I did a lot of Keto and one meal a day intermittent fasting back in the day, which can create some debilitating internal habits later on, where the emergency state of prolonged ketosis is at the cost of the thyroid functioning properly and over reliance on our stress hormones. This then can impact the liver and sex hormones, made more obvious when progesterone levels fall so low in peri and beyond as they are so protective when younger. It would also explain why progesterone only helps for a while as the root cause of the above still remains.

Think it will be a long journey but makes more sense to me than anything else ever has.

Even if you have not had such eating habits, use of the pill (which I was also a long term user of) can also impact these systems.

[dangermouse]

Just to add that this is all due to the brain prioritising keeping us alive when in this catabolic state, hence, mood goes out the window as we are in a flight or flight state until the brain recognises that nourishment is stable. This is through eating enough carbs but always with a fat and a protein, not eating too much protein, eating far more than we have been (if been dieters or small eaters), taking light exercise only, which must include strength training (yoga, weights etc) and enough rest.

I would also get rid of the low dose AD I think you still take as it all has an impact.

[CrispyChick]

Thanks dangernouse.

I've gotta get back on an AD as my moods are hell. I'm totally done.

I'm going to try pregabalin first.

I'll look into the diet you mention. Unfortunately I've had no appetite for months.

I really really hope my volatility is coming to an end!!! You're absolutely right - I had a surge after stopping cm. I tested. My E, P and T were all high. And my fsh low.

I still felt awful though. So it's defo the volatility in my case, not hormonal levels. Which makes treatment impossible.  I pray mine will calm I really really do. I can't take much more. 

[Lclegg002]

Hi crispy chick  it’s totally relentless isn’t it? I really think come menopause things will be a lot easier for us as still maintain it’s these shitty fluctuations that are making us so ill. Your FSH is on the higher side of normal so I really think you haven’t got long to go now. My dad is on pregabalin for sciatica but he said it’s worked wonders for his mood too. I asked dr for some but they wouldn’t prescribe because he said it wasn’t for mood related stuff 🤷‍♀️ anyways… I have survived my dentist and hair appointment, felt so dizzy and weird at one point and thought I was going to have to make an emergency exit but I got through. It’s so weird because my dentist and hairdresser are lovely and I could tell them how I’m feeling but I just bottle it up and pretend I’m ok! I feel beyond exhausted now though so understand how you felt yesterday after your long phone call. I will pray with you that it ends very soon for us both and we regain our lives and get our sparks back. I can’t give you any solutions but I totally know how you feel. You’re not alone ❣️xx

[Lclegg002]

Also, and this is prob just me overthinking and putting it out there, how were you after your pregnancies? I was reading that hormone levels are very low during breastfeeding (which I did unsuccessfully for a few weeks) and I felt really well (apart from being knackered obvs) so I’m now wondering why all women who breastfeed don’t feel like they’re in menopause and be symptomatic? Which again adds to my theory that it’s the fluctuations as opposed to low hormones levels otherwise we would all be feeling menopausal when breastfeeding. Am I wrong in this assumption and/or overthinking? I hope not because it gives me comfort that when this madness is over, life will be good once more 🙏🙏xx

[dangermouse]

Hang in there. Things tend to get worse just before they get much better.

I’ve just finished my steroid eye drops and when on the highest dose I completely lost my appetite. It was the fight or flight feeling of intense fear so appetite naturally goes away as blood flow is diverted away from the digestive system to deal with the apparent threat. I had the same in peri when I lost 2 stone in 2 months from zero appetite and intense boat nausea. As you may remember I used the combined pill to calm things enough to eat again back then but the nausea gradually broke through as it was no longer strong enough to keep a lid on my own hormone volatility. It did eventually settle and now I just get instances of it if I intake too many oestrogenic foods or herbs - in fact, herbs all seem to cause me nausea now. Magnesium too.

My mum was on Pregablin last year but had to stop as she had numbness in her fingers 6 months in but she had been ok on it compared with SSRIs (which made her more anxious) and SSNIs (which caused a vertebrae to fracture). It may help with your nervous system for now.

The metabolic eating approach I am following is the Kate Deering book, and Kitty Martone, who I think you used to follow on FB ED group who now runs ONAs, also does this and she no longer needs to take any hormones including progesterone cream - which she used to take high doses of. She states that the diet has fixed her metabolism so that her body now makes the hormones it needs (she is post meno now).

[CrispyChick]

Thanks guys.

I'm just at a loss. Feel so utterly ill with no hope.

But you'd both given me hope in the pregabalin. I did do 4 days earlier in week if very low dose. And it was fine. But I've had terrible stomach bloating this week, so took 2 nights off to be sure. I think the bloating is my very delayed period. So I'll restart then increase slowly.

I couldn't find much about if helping mood, so I'm so pleased to hear that about your dad LClegg. What dose does he take?

And yes, dangernouse, I'm so broken after my trial of higher dose ssri that I can't face another AD. Good to hear your mum found pregabalin easier.

LClegg...interesting re. The refusal. From what I've read, it's licenced in England for anxiety! Not mood mind. I saw it in NICE guidelines. It's not however licences for it here in Scotland. But my GP is very supportive as she's watched me go through this hell for 7 years. My nervous system is rattled, so my thinking was to try and calm it with pregabalin.

I'll let u know how it goes. I'm starting very very low. It should also increase appetite.

I'm not sure about the pregnancy thing. But if a blur. Got anxiety both times though. Also struggled to feed.

I just need this to end. I'm losing so much now. 🙈 I'm going to do my own bloods on day 3. Check that fsh again. Everything I read says estrogen plummets rapidly in the last year of peri. I want that. Because I can't stand what I feel is the massive peaks and troughs.

Thanks for the messages. It really is nice to hear you're not the only one. Although it's horrible for you guys too. Xx

[Gnatty]

In case this helps at all. The feeling of nausea and dizziness when socially interacting and needing to just go to my room and lie down was the beginning of  I guess in the old days what would have been called a nervous breakdown for me back in 2017. I had no clue what was happening to me. Shaking, hot and cold extreme nausea unable to eat,  unable to get out of bed... When I look back I guess it was perimeno but I hadn't a clue. I was very lucky in that it was completely cured with a low dose sertraline and a few days of diazepam. I never knew that anxiety could be so debilitating. I know you thought it wasn't anxiety but the symptoms sound so like what I went through. x

[Lclegg002]

Morning Crispychick    I’ve told you incorrect info, sorry, my dad is on gabapentin but I think they are similar to pregabalin. He is on 300mg.
How are you feeling today? I am feeling really low, I think I pushed myself too much yesterday. I’m supposed to be out with my girlfriends tonight but once again I am cancelling. They don’t even think anything of it these days, I’m surprised they even invite me anymore if I’m honest. I’ll be annoyed with myself that I haven’t gone later but if I go I will just want to come home so I am just constantly at battle with myself. I started some meditation last night, I find it so hard but am desperate to feel well and just need to switch my head off. I hate being inside my own body at the moment. 
I hope you are having a better morning xx

[CrispyChick]

Thanks Gnatty. I'm pretty sure that symptom is not anxiety, as I've been battling it 7 years. And tried many things in that time.

LClegg. I'm sorry you're in that position again. I do absolutely nothing nowadays. My friends are understanding - I think because I'm off work and being investigated for so many things.

Thanks for the update on your dad. Yes, I believe gabapebtin and pregabalin are very similar. But different dosing.

After a mm assume depressive episodes yesterday - I decided to bite the bullet and try mirtazapine instead. Both a phsychiatrist and my neurologist recommended it to me for my anxiety, depression (that's new) and my dizzy thing. Also helps stimulate appetite.

I'm, as expected, a complete zombie today. Big feel better now knowing I tolerated low dose pregabalin, so can still go back to it and work my way up.

It's actually been quite nice to start something without weeks of overthinking first. Although now im totally overthinking. I'm so scared of any side affects. Zombie is one of them. 

[Gnatty]

Hi there, I think I have spoken on here before about Mirtazapine. That was what I went on after my total hysterectomy and oophorectomy four years ago. Yes it does make you feel like a zombie to start with - it's really common - but it wears off after a few weeks and the good thing about it t is there aren't any of the other awful side effects you can get when you start an AD. I shall be eternally grateful for my GP for giving it to me. I really believe he saved my life.

[CrispyChick]

Thanks Gnatty.

That's very reassuring. So a few weeks it took to wear off for you??? What dose was this on?

I went straight in on the 15mg as the phsyc confirmed lower doses are more sedating.

Yip. I upped my escitalopram for 12 weeks and became suicidal. Horrific 12 weeks.

Are you still taking it now? Many thanks for the support. X