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[SarahT]

Hello ladies,

Having been on hrt for about a year now, after many ups and downs, particularly mood swings, the last couple of months I have felt far more stable. The addition on a low dose of AD has helped and well as upping the patches to 125 to try to suppress ovulation. Other than medium pms I feel I am.as best as it can get.

The one thing that has never improved and has worsened is the severe exhaustion, muscle fatigue and joint pain. I assumed it would be alleviated with the higher hrt, but no way. After extensive blood tests, ( awaiting a specific cortisol check) I went back to my g.p. My energy is so poor, I have only been able to do a fraction of what I could a few months ago.

She says the chronic fatigue syndrome I first had 30 years ago is back,triggered by perimenopause. I am gutted. Have had a few days to mull this over now and am just heartbroken that my hormones have yet gain turned on me. I literally seem to have got back a lesser version of me mood wise and now this.
Last time I was severely ill for 4 years. couldn't even walk across a room some days. As yet I don't feel that bad but having been there, I know what it can do. Feel nervous and a bit vulnerable again.

Has anyone else has cfs triggered by perimenopause?

[CLKD]

Why does your GP think that there is a connection?

It will depend on what caused the chronic fatigue syndrome initially.  Also how you have coped in between.  Has there been any indication cyclically that hormones are involved?

We shouldn't blame peri on everything.  I can't remember whether you were affected by Covid ?  which may well remind the body of the CFS.

How R your VitD levels?  When I had it 4 years ago I would do 20 mins weeding then have to sit absolutely still for at least 2 hours.  I began to think that I had something terminal, blood tests showed that my levels were low.

Also the weather has been hot/cold/humid/muggy - and sometimes AD can slow the body down, it's what they are designed for in many respects.  To relax us to get rid of anxiety etc..

[Nas]

Hey buddy,
Sorry you are finding yourself in this crappy position.

I have no experience of cfs, but is there any thing you can do, to help alleviate the symptoms? Follow a particular diet? Supplements? Testosterone?

Baby steps maybe? Doing little and often?

Thinking of you Sarah 🌺🌺🌷

[Jules]

Hello ladies,

Having been on hrt for about a year now, after many ups and downs, particularly mood swings, the last couple of months I have felt far more stable. The addition on a low dose of AD has helped and well as upping the patches to 125 to try to suppress ovulation. Other than medium pms I feel I am.as best as it can get.

The one thing that has never improved and has worsened is the severe exhaustion, muscle fatigue and joint pain. I assumed it would be alleviated with the higher hrt, but no way. After extensive blood tests, ( awaiting a specific cortisol check) I went back to my g.p. My energy is so poor, I have only been able to do a fraction of what I could a few months ago.

She says the chronic fatigue syndrome I first had 30 years ago is back,triggered by perimenopause. I am gutted. Have had a few days to mull this over now and am just heartbroken that my hormones have yet gain turned on me. I literally seem to have got back a lesser version of me mood wise and now this.
Last time I was severely ill for 4 years. couldn't even walk across a room some days. As yet I don't feel that bad but having been there, I know what it can do. Feel nervous and a bit vulnerable again.

Has anyone else has cfs triggered by perimenopause?

I have CFS. When you say its back, did it ever go? Or do you mean it's relapsed. Mine has never gone. It's not as severe as when first started but I still have symptoms and have learned to manage it. Certain things, particularly stress, can increase the severity of the symptoms. Menopause hasn't had any effect. Aging has though.

[SarahT]

You are quite right we cannot blame everything on hormones it was my own assumption that peri was affecting both joints and exhaustion as is often the problem for some women, yet it  can relieve these in some cases it seems, or at least improve them.
 It wasn't until I was better on the maximum patch my gp would allow, and that after my worse symptom- moods were relieved, that I needed to address the exhaustion and joints as not hormone related.

I cannot pinpoint the exact cause of my first bout of cfs ( diagnosed by my drs) as I had a continuous reign of flu\colds\ infections. My symptoms were as they are now.

My bloods have been many and all ok, I have been like this both on and off ADs. It rules out any other condition, and given my history she has no doubt.
 Anyone who has cfs knows this is not like having a particularly hard day, or extra exercise and being a bit ( understandably ) knackered. It is way beyond that level. In mornings I cannot lift a kettle as I have weakened muscles.The joint pain is such I cannot get up off the ground with out help. And with cfs it simplified does  notgo away. You don't feel better the next day. It stays.

I am struggling to have a better stability in my health, only to be  kicked back again. I was accepting, and ok that the hrt was as good as it could be, just needed to get the exhaustion and joint pain sorted. I was hoping it would something simple, not this again.

[SarahT]

Hey Nas my faithful partner.

I have a feeling we need to change our rally cry of ' Things Can Only Get Better".... The pair of us are in a bad way again aren t we.

My g.p will be referring me to a cfs clinic fortunately. When I was so gerbil with it years ago I had no help at all. Ever. I felt let down then.

So there will at least be support and help this time. That's massive. I have already drastically reduced what I do in a day. One short walk stopping to sit down as I need to, a bit of housework or a few mins in the garden. It's Crap really. It's happened quite quickly.

Here we go again Nas. Big hugs to you buddy xx

[SarahT]

Hi Jules
Sorry you too at living with cfs. For me, about 30 years ago I had cfs for about 4 years. No support or advice at all. I just did the best I could. Gradually I got better and was able to work and live a pretty full life.
As for the years in between I have noticed I do reacted quite badly to stress, that pulls me down,I could no longer tolerate stimulants, like alcohol or caffeine, they would tire me greatly. But the joint pain and muscle weakness went.
This year has been shite, won't go into it all, but it has been the most stressful year I think of my life so I think yes, that it probably never disappeared, but the combination of bad experiences this year has not helped the symptoms. Two of my g.ps have said perimenopause can worsen pms, and pmdd  and also retrigger cfs symptoms.
No I don't think it goes, but it may be more dormant at times.

[CLKD]

It was thought of a 'yuppy flu' in the 1980s, so GPs weren't on board that this is actually a condition that should be recognised  .  My Aunt suffered: the GP did all kinds of tests, sent her to a Psychiatrist, she had a hysterectomy ...... to see if that would improve her exhaustion.  Nope.

A loss of oestrogen can certainly impact on laxity of muscles = aches and pains.  Add to that an already depleted body/immune system, must make everything a complete effort.

[Nas]

Always here for you buddy,
I may not totally understand how you are feeling, but I’m here virtually, holding your hand.

Come on girl.. hopefully the clinic will be supportive and hopefully helpful. Xx

[Jules]

Sarah mine seemed to start with tremendous work stress and bullying and a bout of flu like illness. Me and my sin had it. He got better, I took longer and from that point I had bouts of those symptoms every few months till I finally hit the floor and was off work 8 months having tests. I had severe pains in my leg muscles.  The fatigue was hideous. I think it contributed to my eventual marriage breakdown. I rarely get the leg pain now, if i do i know ive crossed the line, and did make some recovery but not fully, never worked full time again. I had no support either once diagnosed. My GP suggested it was psychological.  Now, I'm 65 and feeling the lack of energy more and fatigue more easily, have some of those days when I feel my battery has been unplugged. I don't know what stage of menopause I am at. Periods stopped at least 10 years ago. Have the odd hot flush still, have VA, generally feeling my age though people say I don't look it. I'm sure ME/CFS is worse with age but don't know about hormones, it must use up valuable energy that you haven'tgot much spare of. If I ever have a cold it floors me, it's always been the case. Strangely and despite contact with people testing positive, I've never had covid. I didn't have a bad menopause really so I feel for you having to cope with both. 

[SarahT]

Thanks as always Nas. Needlepoint each other up don't we. Luckily.

Still a bit shocked\upset\resigned. But just have to accept this is happening and deal with it. I said to my long suffering husband we've been dealing with the symptoms for months now, so knowing what it is won't change that but we can't let it affect our minds as well.

How is it going with you?.any closer to an end to fibroid? Progesterone thoughts of mirena does get removed? And of course you, in yourself how you doing?

Merry little band aren' t we? 😍

[SarahT]

Jules, thank you for getting back too.

I too was under a good deal of work stress 30 years ago, I think that with constant illnesses was the start, much like yourself. And also battled on until I too crashed. Was made redundant, and did part-time access to degree college courses as that was easier to manage with the fatigue.

I almost don't like mentioning the stress part as a contribution as I am wary I will be classed in the psychological bracket entirely, when it is obviously a range of physical symptoms too. When I was my gp last week it was her who brought up cfs, I felt I couldn't broach it after my negative drs experiences 30 years ago. Felt like I would be dismissed. Though it was diagnosed as such in my medical records.  But as CLKD days, and we know, ME\CFS  was so new and not understood at that time. So we were unsupported.

Like you I have never tested positive for covid, odd that isn't it? I have always known I have ' reserves ' of energy I need to keep back and these last few months have slowed down enormously. Needless to say I do too much one day and pay for it drastically the next. It can take a considerable strain on all parts of our lives, I am.sorry your marriage broke down and that your hill health may have played a part. I do not feel as poor as I did then, so want to retain a stability so aim to be as careful as I can do I do not slide down.

Yep, ageing is natural and We alter due to that too. I am 56, still in in perimenopause, have osteoarthritis in both hips too. C'mon body give a girl a break. I know I can work with this, it's here and I need to get on with it but I admit having some advice and support so I get it as right as I can will help so much.
Take care Jules

[Nas]

Hey buddy,
What ever symptoms/ conditions we face in life, we mustn’t let them define us. We are still Nas and Sarah, just coping with a  new and challenging life. We can’t help the shit which is thrown at us. I do believe we go through a kind of bereavement process, where grieve the old us as we try to come to terms with the new us. It’s tough and challenging, but makes us stronger ( I think !)

Your husband is your rock and my partner is trying to understand the huge hormonal changes my body is going through.

As for me, well I have an MRI of this fibroid on 26th September. Then back to gynaecologist ( hopefully) to discuss a hysterectomy. The beast is pressing on bowel and bladder, causing mayhem!

Mirena is in situ. I need oestrogen and can’t face the thought of bleeding again.

My daughter heads to uni next week and well, my hormones aren’t coping so well. Trying hard though and taking a day at a time.

Take good care ❤️❤️

[Dorothy Gale]

Hi

I have SOOOO much I could say on this subject as I'm living it myself. But my energy is zero and typing on my phone is really hard due to my weak muscles in arms.

But YOU ARE NOT ALONE IN THIS.
I AM EXPERIENCING EXACTLY THE SAME AS YOU.

I got ME 30 years ago too. Bedbound 4 years too initially  but improved to live a decent ish life around the relapses and I was happy and able to do most things.

But this year of covid and perimenopause has left me so incapacitated I'm now in need of full time care and bedridden. I have zero strength or energy. Muscles so weak, joints so painful, fatigue crushing. 100 x worse than it ever was before this year of HELL. Never ever felt this ill when I just had M.E.

Perimenopause definitely worsens M.E . It has done so in lots of my M.E friends so I know its like it's sucked every single drop of strength out of me and left me unable to function  mentally, physically or emotionally amd cannot manage the basic of things. Literally no strength left.

SO it's happening to me too. I'm absolutely terrified. Doc cannot help as it's ME related and they can't do anything for that


Just wanted to offer my support.xx

[SarahT]

Hiya Has

You are so right. These things are a part of us, both the whole of us. I just need to give myself a mental small in the dad e and get on with it. It's justified odd moments ( you know too well) where you just think "  seriously? How much more can I take ". And yep we keep on going. But you are right that we still need a bit of time to grieve almost as to what we have lost and accept who we are now. I know I am worse off than so.e but so much better than others. so here we go for stage 374 for this year...😂

Good your appt is coming round fast,one appt at a time. I couldn't face bleeding again I just say. Get your speech ready regarding the hysterectomy plan, make sure you can say it now it is.
Well done to any parent who raises a child to be the best they can as individuals. Uni is a huge step for the entire family, you just be feeling mixed emotioins.

Keep going my friend, we've got this... ( whether we Like it for not it seems!) Xx