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[SarahT]

Dorothy I have read your previous posts and In know how severe and debilitating the M.E is for yourself. I guess covid was a huge bearing for your weakened system. And yes,my drs have said peri can have an affect 're M.E. Or CFS.

I genuinely appreciate you reaching out to me, I do know the extreme difficulty it can be for you to do what is normally a simple task such as writing a message. Thank you for ensuring I know, like mothers on this forum, we aren t alone. As I said to yourself I think, this isn't our fault,we don't chose this or anyone with a debilitating illness or condition. It's not a life choice.

I certainly am not as severe as I have been,I remember making a hot drinks once, but that effort left me so fatigued I couldn't lift the cup to drink it, or being cold in bed but too weak to move the duvet up.
As this has crept on over the past few months I have ensured most days I do less, reluctantly,as I know the consequences despite me not acknowledging the cause. Thankfully this time I may have support from a CFS clinic. It can't be a coincidence that there are at least three of us who first had this some 30 years ago and have now has bitten back again.

Again Dorothy thank you. always post even if it's just for ( crucial ) support. Take care x

[Dorothy Gale]

Thank you xxx

It helps so much that you're all there for me. I'm really scared as all I can physically do is lie here and breathe  I can't see any way out of this. When I 'just' had ME at least I knew I'd bounce back from relapses. Those days are gone since covid and peri.

Literally terrified. I have zero qualiy of life and no one can help.

Hope you can get support. Thanks.

Xx

[SarahT]

Dorothy do you not have any back up from your gp regarding the ME, or ever had a referral to a specialist?

If you are unable to contact anyone yourself due to the severe weakness ( and sometimes for myself a feeling of such defeat I can't bring myself to speak to medical persons) is there someone who can do so on your behalf? I think you have spoken before  of your husband or partner? Is he able to perhaps push for medical supervision as your carer? Or can the action for ME group help you get the proper medical support?

Worrying you have been through all these avenues before, but someone in such a severe way just surely be given medical supervision?

[Katherine]

SarahT I have found that as I’ve got older I’m more vulnerable to chronic fatigue symptoms. It seems to have got gradually worse with age. I have found that a poor nights sleep makes it ten times worse so good sleep is key for me. Vitamin d , b12, and iron levels are also important. I tried a vegan diet once for a month and my energy levels soared but unfortunately I gave that up due to dairy and red meat cravings. It’s really great you have a referral, I’m sure that will help.

[Jules]

Thank you xxx

It helps so much that you're all there for me. I'm really scared as all I can physically do is lie here and breathe  I can't see any way out of this. When I 'just' had ME at least I knew I'd bounce back from relapses. Those days are gone since covid and peri.

Literally terrified. I have zero qualiy of life and no one can help.

Hope you can get support. Thanks.

Xx

I sort of know that terrified feeling. I panic if I think I've sunk in a trough and won't get out,  I remember the days when i couldn't even tolerate my own breathing, but I've learned to tell myself I will get my head back above the water line. I've never had a relapse as bad as yours though but im sure you know this, feeling scared, worrying etc absolutely drains energy, it's exhausting. It has such a negative impact on my symptoms. Can your doctor not at least help to sort out your hormones then you're not battling that as well as the ME? I hope you find someone to help.  Please ask your doctor.

[Katherine]

Jules I’ve had that exhausted feeling many times, when I’ve started the day tired then done too much during the day, and I’m empty and panic during the night. I’ve learned that I really have to not push myself to my limit. I also identify with the breathing thing you mentioned. I’ve never heard of anyone else have that before.

[Dorothy Gale]

I am completely intolerant/sensitive to meds and had 30 years of reacting severely to them over the course of my illness of M.E. I'm even intolerant to supplements. This issue often occurs in people with M.E.

It has left me with extreme anxiety over taking meds now.

I have a supportive gp and I'm under the mental health team who ate always there for me. CFS clinic will not take on severe cases of M E as we are bedboundand unable to attend a clinic.. They see mild/moderate cases. They really just advise on management etc. pacing, lifestyle, alternative help. They cannot cure you.

There's nothing they can do for the M.E. and how bad it is now due to perimenopause. I've had M.E long enough to know there's no cure or anyone that can change this situation if crippling fatigue and incapacity etc. All my bloods are normal so no issue with levels if anything. M.E is a devastating illness.

All gp can do is offer meds to help with symptoms caused by it like sleep, pain, depression and management advice.

There are over 250,000 M.E sufferes in the UK, 25% are permanently bedridden and in need of full time care like me...and hundreds of thousands more suffering similarly with Long covid.

I have been offered AD and hrt. Terrified of taking as side effects are so severe for me and you only have to be on this forum to see the nightmare women have. (Yes I know a forum will always be skewed) I know its the chance you take to maybe feel better....but my anxiety blocks me.

HRT needs to be tailored to you I feel. Gps are too one box fits all and I don't know if what she's giving me is right for me....for my body? I'm terrified of progesterone now having been on this forum....I'm terrified of estrogen........

I put on a sequi patch a few months ago and my anxiety of all the side effects caused a huge panic attack and I ripped it off.

I'm just too ill to cope being made worse.

Sorry...I know I'm a very negative person but I've been ill for 30 years and all this extra illness and devastation to my life is too much.

X

[SarahT]

Morning Katherine,
Yep age makes a difference I am certain, was in my 20's when cfs was very bad, now 56 so we can react differently especially throwing the hormonal upheaval and it's difficulties as well. But I think as we many of us as are more aware of our bodies and it's strength and weaknesses. These last few months I have slowed a lot, and stopped many activities and I know when I do too much I also.pay for it the next day. It's just hard balancing the essential tasks, the ' I want ' tasks and need ing to rest frequently.I feel I am losing a lot of my life did to the fatigue and a guilt i am letting my husband down - not that he ever complains he understands.

I take prescribed iron, take it with Apple juice to help absorbtion, and being veggie I keep my b12 up diet wise. Sleep wise  I drop off ok, but have a restless night with the hot\cold thing and joint pain.
Look at us, just got to keep going with whatever is thrown at us. Take care x

[SarahT]

Hi Jules,

I think I am doing ok mood wise in regard to the CFS.  Being believed by the gp was vital this time around. I am scared my mood may dip, but I am trying to pace myself in the hope that I don't get worse. I can function ok, albeit slowly and mainly only do essentials. Am trying not to compare myself with how I was a year ago, gardening hard most of the day, two hard long walks a day. That's gone but it's how things are.

I think having hopefully settles my hrt regime has had a huge positive impact. so so can now deal with one crisis at a time. Bloody hell it's Crap sometimes when I think this is a good thing.
Breathing wise I sometimes am so tired  it seems an effort to breath. I miss being able to multi task too,  now I concentrate on one task at a time. I think there are obvious overlaps with peri symptoms too. Double whammy. So far, my head is above water.

Thanks for your support, we all know someone else who understands us is a vital help. X

[SarahT]

Good morning Dorothy,

I am pleased you have some form of support medically speaking, and the mental health team too. I know there is no cure for ME\CFS, that it is lifestyle changes and adapting.  I just feel relieved my gp straight away realised it has come back again. Last time I never felt I was believed and as you know that leaves you very much alone, and sometimes doubt yourself.
I saw yesterday that a Cambridge ME group were campaigning for more medical training regarding this condition. From a large group only three could attend as so many were bed bound or house bound.
Without prying, or asking you too personal a question, can your mental health team help with your intolerance to medications? I know it is probably a physical reaction, not necessarily a psychological one of course. Many who may be a bit more tolerant than yourself start with the tiniest of else's and work  up very gradually. But I suspect you have tried this before. I am sorry I don't have proper advice for you.

Whilst this forum is mostly full of women who are having every hard time with hormones and hrt you are so right in that it can seem very negative scary
For myself I have had an awful time, feeling ten times worse before after many changes, getting to a stability hormonally speaking. It can help some women, even if we have to push past a mad and scary decline to get to that point. Some week to have an instant relief, and some time it just does not suit. Luckily my gp was not a one size fits all and persevered with me.

Could the clinic not do video of phone calls with you if you have the energy?

Whilst your body is weak from illness and of course it affects your emotional side too, yourself are NOT weak, of course you may sound negative at times.  ME is horrific, particularly for people such as yourself who are so severely impacted. But here you are supporting others and some days able to respond to other womens posts as well.

Take care Dorothy

[Ms Jacks]

Hi folks.
Interested to read all you know or experience with CFS. Got diagnosed in June after many many tests for this n that.
I had a first bout of severe diverticulitis in January 23 and its resulted in CFS.
Stress is a massive one for me to get wiped out- currently have another thread re ' adult children'
My vit D, B12 I keep high which helps a little
All the best
Ms Jacks x

[Dorothy Gale]

Sarah, keep us updated how you get on.

X

[SarahT]

Thank you Dorothy I shall indeed.

Likely to be a while before referral comes through, and am so far resisting looking on ME sites etc in case it freaks me out too much. Have just got to a pretty stable place regarding hrt after a hellish time, so this may knock me back a bit mentally. So doing the ostrich head in the sand for  now and just trying to not  push myself too hard ( Like I have any choice)

Thanks for the back up, do post as and when you need to. It does help when others can identify with things, despite none of us deserving this.

Xx

[Dorothy Gale]

Thank you. I wil. I appreciate the support x

Thinking of you.

[Jules]

Thank you Dorothy I shall indeed.

Likely to be a while before referral comes through, and am so far resisting looking on ME sites etc in case it freaks me out too much. Have just got to a pretty stable place regarding hrt after a hellish time, so this may knock me back a bit mentally. So doing the ostrich head in the sand for  now and just trying to not  push myself too hard ( Like I have any choice)

Thanks for the back up, do post as and when you need to. It does help when others can identify with things, despite none of us deserving this.

Xx

I've never looked at forums about ME because I felt bad enough and didn't want anybody else's experience making me feel worse when it might never apply to me so I made my own plan, tried as much normality as possible, once I could, I did enjoyable things and told myself I'd deal with the fall out if it came and that it would pass. I still have rough periods, I'm retired now which has helped.