Feeling rubbish! Help please.

Hope you are coping okay Cossy, and not feeling quite so awful as you were.

nadateturbe

The above is a link to an article about Sajid Javid's work on M.E. I hope Labour continue and prioritise this research. It's such a debilitating, life limiting illness.

It is indeed nadateturbe. And can be so misunderstood as a previous poster showed. I have been told outright by a couple of (non-medical) people that I haven't got ME/CFS! It seems to vary so much between people too.

I feel lucky that I can do 'normal' things using strong coffee as a sort of drug. That way I can volunteer in a charity shop once a week, do things during the daytime, run a sort of Airbnb type business, and dance every week. When I'm out doing these things no-one would guess I have ME/CFS, but what they don't see is what happens when I'm home, especially after doing something very active.

I'm also different from a friend who describes it as feeling like a lead coating on all her limbs. For me it feels like a lead coating too, but over my head; a physical feeling that brings me crashing down. I rest and sleep a lot when I'm home, and often when I've been out I literally fall into bed, still dressed and teeth uncleaned! Fortunately I live on my own; I simply could not cope with having anyone living with me and it would be intolerable for them.

When I was diagnosed (over 20 years ago), I was told that it probably had an auto-immune cause, especially as I also have Type 1 diabetes which is also an auto-immune condition. My friend goes down with colds and coughs all the time, but I don't ever seem to get them. Instead, I just feel more exhausted when they are going around, which is presumably my overactive immune system overdoing it again!

I can't push the coffee thing for too long though, just for a day or so, or an evening if I have to, but I find evenings really difficult, as I'm unable to get to sleep because of the caffeine!

I bet everyone on this thread who has ME/CFS will be affected in a different way; one day they may find that it is several different conditions.

The above is a link to an article about Sajid Javid's work on M.E. I hope Labour continue and prioritise this research. It's such a debilitating, life limiting illness.

www.facebook.com/share/p/KugMpAq1a2TXYV5y/

62dg I suffer badly with M.E. Spend a lot of time lying down Perhaps you could tell us some things that helped, even briefly. I know we are all different and don't respond the same, but there might be something that others could try. My worst symptom is a severe shortage of energy, like tiny battery capacity. iykwim.

Would you consider making a thread about it, please?
It would be really helpful to a good few of us.

I have had m.e. For 37 years housebound and bedbound for 36 of those years. I have recently become a lot better due to many many things to in-depth to mention here. If you think I could help in any way. Message me. With good wishes Diane xx

MrsDally

Thank you ❤️‍🩹❤️‍🩹

Cossy

FranP

Thanks for support and advice.

I have a video PIP assessment on Friday 😱😱😱 It’s my second “attempt” as I tried 1 year ago and scored zero and sadly the assessor clearly did not listen as full of inaccuracies - I should have requested a Mandatory Reconsideration, then gone into full appeal (used to work for DWP!), but I just felt too tired and weary to go to war!

I was awarded PIP this year but you have to try and get across how absolutely debilitating this is for you. I had a telephone assessment too. I think what might have swayed it was I broke down and started crying when I told him my grandson keeps asking me to go on holiday with him but I can't go as even the journey would be too taxing. It depends on who the assessor is too. Good luck

FranP

Thanks for support and advice.

I have a video PIP assessment on Friday 😱😱😱 It’s my second “attempt” as I tried 1 year ago and scored zero and sadly the assessor clearly did not listen as full of inaccuracies - I should have requested a Mandatory Reconsideration, then gone into full appeal (used to work for DWP!), but I just felt too tired and weary to go to war!

Hi Cossy
I really feel for you, I was diagnosed in November last year with fibro/CFS it took me 11 years to get diagnosed (being told it was pre menopause, menopause, my age etc) It can be very overwhelming especially when you feel so ill every day. Try to think on the darkest days that there might be a better day tomorrow. It's a horrible illness as it affects your whole body and your whole life. Be gentle on yourself and don't be upset with the things you can't do but take pleasure in the things you can. Gentle hugs from a fellow sufferer xx

Again, massive thanks to you all for reading and your many varied and helpful suggestions and support.

Lottidot

Thanks for being so open and frank.
Great advice here and I wish you well.

To those who still feel fibromyalgia and ME/CFS are “made up” and you “don’t believe in them” and they are just like arthritis

1) thanks, it’s people like you who make life so difficult for people like us!
2) These conditions aren’t the tooth fairy or Easter bunny, to believe in or not to believe in them isn’t your call.
3) I’m more than aware of mental health issues, sadly our family is riddled with them, schizophrenia, personality disorder, clinic depression, anxiety and (not strictly speaking a mental health issue) autism. Are these also all made up?
4) whilst the pain levels of Fibromyalgia can mirror arthritis, I also have osteo-arthritis in my hands and wrists and my poor late mother was crippled with osteo-arthritis as well as osteoporosis, kidney disease, HBP.

I have seen several GPS, a neurologist and a consultant, they all “believe”

Your comments are unhelpful and extremely ignorant!

sending all the love. If any support is needed, do let us know. Or if you like to write or want to publish a book as it can be a therapy for you. Do check out <a href="https://lynxpublishers.com/ghostwriting" target="_blank">Best Ghostwriting Services</a>

sending all the love. If any support is needed, do let us know. Or if you like to write or want to publish a book as it can be a therapy for you. Do check out [url=https://lynxpublishers.com/]Lynx Publishers[/url]

That’s interesting Millidog. My daughter in law is exactly the same. She became ill as a teenager after receiving the TB vaccine and it took her at least thirteen years to recover. She did recover and went to university and now has 4 children . She is just 40 and is really desperate not to catch covid as she fears that might bring back the ME .

One of my daughters was diagnosed with ME as a child. It affected her schooling but she was able to go to university. She has worked abroad and in the UK but although she has now recovered, she's had occasional relapses. What helped was to see an ME consultant privately. He did various tests and discovered that when she breathes, there's an imbalance in her oxygen / carbon dioxide levels. He gave her breathing strategies to combat this.
She's now in her 40s, and although doesn't have normal energy levels, she functions well

Gundy

I live with pain every single day, but I don’t have fibromyalgia - I have arthritis.

I’ve never understood what exactly fibromyalgia is and I’ll admit, I don’t believe in it. I know people who claim they have it but it always mirrors my arthritic pain.

I’ve had trauma in my life, grief, of course, just like they’ve experienced. I just got up and went to work every day. So what about the pain?

I just refuse to think there is anything more wrong with me than old age arthritis. I certainly will not spend any time and money on things that seem to be incurable.

And don’t ever give me medication to try and cure that stuff - too many pills can actually make you sick! If a person is overmedicated - get off the drugs.

I’m totally aware of mental health issues and true chronic conditions. I worked in a hospital for over 20 years. Not everything is curable. I have good sense to know that.

Is it mind over matter? Works for some people. I’m active and GRATEFUL every single day. I get up and go. You don’t have to spend money… all you need is fresh air, sunshine helps, walking around your neighborhood/town can turn into a miracle for your head, volunteer work leads to friendships, everyone needs their support group for activities and fun.

Give yourself a chance for the rest of your life!

And that is why it feels decidedly uncomfortable to admit to having an autoimmune condition.

Hi Cossy

I do empathise. Whilst I do not have Fibromyalgia, I do know how demoralising it can be.

I, too, lost my parents in the same time span as you, and am still coming to terms with the loss of my mum, particularly. I lost my very very best friend when she passed.

Like you, I am having issues with my youngest son (22yo) with his “entitlement” attitude, which I feel is impacting on my relationship with my husband (not his Dad). I love my son - always have, always will - but I’m not prepared to be treated so shabbily by him (although he thinks I’m the one who enjoys the “agg”!). I don’t seem to be able to do anything right and feel I’m walking on eggshells all the time where he is concerned. We were once so close, and I so enjoyed being his mum when he was younger, however, I’ve decided enough is enough. I’m need my own peace of mind, so I’m willing to let him go for the sake of my own peace and happiness. I’m sure he’ll come around once he’s got more life experience…

Now I’ve retired, I’m learning new hobbies, have my first granddaughter/child from my first born son and have a good relationship with him and his partner.

So, I guess, my advice to you would be, think about how you would like to feel, how would you like to be treated, and how brave are you to put it in motion? Are you reliant on your family members that you having issues with? If so, then perhaps talk with them about how you’re feeling and perhaps set boundaries (and keep them - think long term). If you are not reliant on them, think hobbies - new and old - join groups if that’s your thing (I’m really not a people person, so Fb groups work for me, rather than face-to-face ones).

Keep a journal about anything. I do about my mum (I do that by writing her letters in my journal, I rant and rave about my youngest (which helps me put things into perspective sometimes), and most importantly what me me happy that day, what made me actually laugh out loud (and as it’s your journal it can be anything), in fact make your journal your friend. You can do this via written word or you can dictate it using the microphone option, which types it up or is an audio.

Find what works for you, Cossy. You are enough. You are as important as the next person.

Sending love and hugs to you, sweetie x

I live with pain every single day, but I don’t have fibromyalgia - I have arthritis.

I’ve never understood what exactly fibromyalgia is and I’ll admit, I don’t believe in it. I know people who claim they have it but it always mirrors my arthritic pain.

I’ve had trauma in my life, grief, of course, just like they’ve experienced. I just got up and went to work every day. So what about the pain?

I just refuse to think there is anything more wrong with me than old age arthritis. I certainly will not spend any time and money on things that seem to be incurable.

And don’t ever give me medication to try and cure that stuff - too many pills can actually make you sick! If a person is overmedicated - get off the drugs.

I’m totally aware of mental health issues and true chronic conditions. I worked in a hospital for over 20 years. Not everything is curable. I have good sense to know that.

Is it mind over matter? Works for some people. I’m active and GRATEFUL every single day. I get up and go. You don’t have to spend money… all you need is fresh air, sunshine helps, walking around your neighborhood/town can turn into a miracle for your head, volunteer work leads to friendships, everyone needs their support group for activities and fun.

Give yourself a chance for the rest of your life!

I have had M.E. for many years. You have my sympathy Cossy.
Good post from Cookiemonster.
I don't have the energy right now to add anything.

Hugs! one day at a time.

There does seem to be no one-fits-all answer or management, nor any common timescale. But depression and anxiety are common side effects of the constant pain of fibromyalgia. So allow yourself to be relaxed about this and not feel you should be able to simply get over it! There are, of course, pills for that, but it is trial and error to find the right one(s) - possibly the stress, bereavement couple with retirement (SAD may also be in the mix) has made it harder to handle. It is OK to simply wallow and treat yourself to help you feel a little better.

I was diagnosed with post-viral fatigue, as my GP said he did not like ME as a diagnosis. He recommended doing as much exercise as I could manage on the "Good days" and resting as much as possible otherwise, with lots of fresh air and sunshine. I suffered for 9 months and it helped me mentally feel better but not with the symptoms.
Then I had 2 bouts of tooth abscess and 14 days of heavy anti-biotics from the dentist - all my symptoms went away. So possibly I was mis-diagnosed.
But they came back post-COVID attack, and it has taken me so far 6 months to begin to recover. This time, I was advised to simply relax and not do too much but let it take its course.

I had a nasty fall (Not related) but the osteopath sessions (not physio) helped with both. It is a recognised therapy for fibromyalgia, so your doc should be offering.

A friend swears by light therapy.

You are "counting your blessings" already so well done for that! And yes it is totally Ok to feel down and bitter.

You have not mentioned finance but if you are in the UK, fibro is a recognised disability and you can claim for PIP to help you with transport, help around the house and non-NHS treatments. (But do get help to fill in the forms - it is quite a stressful minefield and you would think that the DWP folks were paying out of their own pockets, and when they assess you, do not try too hard)

Cossy

Thanks again for both your support and for sharing. I must admit I have been a little sceptical about the actual diagnosis’ but guessing as everything else gets ruled out, I’ve had multiple blood tests and scans over the years, and I tick the boxes for both Fibro & ME, I’ve had to accept this as my diagnosis. Difficult isn’t it? Be so much easier if actual testing could be a positive indication rather than just ruling out all other conditions.

I wish you all well managing your conditions and hope you all find some comfort

Yes, it is very difficult, it all seems a bit "hit and miss" with tests and results.

Its embarrassing, I find, I don't know why, but I dislike having to say "autoimmune condition".

Probably down to my own prejudice, so that's a huge lesson learned.

I suck sugar free sweets for my mouth.
You can buy ones formulated for dry mouth conditions, too, from the chemist.

I take meds to moisturise my mouth, and for around an hour, I have some saliva too.
Yipee!

MadeinYorkshire Sending you, especially, a big huge hug

Thanks again for both your support and for sharing. I must admit I have been a little sceptical about the actual diagnosis’ but guessing as everything else gets ruled out, I’ve had multiple blood tests and scans over the years, and I tick the boxes for both Fibro & ME, I’ve had to accept this as my diagnosis. Difficult isn’t it? Be so much easier if actual testing could be a positive indication rather than just ruling out all other conditions.

I wish you all well managing your conditions and hope you all find some comfort