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moonlightglow  Female  Cheshire 21-Feb-2019 20:59 Message #4735762
Anyone else suffered this badly with it ?

I have been bedridden now for almost
2 years my cares extremely poor too

Any positive input greatly received

The loss I've experimental has been shattering to extent feeling like! a refugee

Its titled a mysterious and invisible illness ,its so isolating illness,especially when I don't have any family either

Any input would be so gratefully received

Thank you in advance
moonlightglow  Female  Cheshire 21-Feb-2019 21:23 Message #4735764
Error above. the word"experimental ". should read " experience "my apologies
terry  Male  West Yorkshire 21-Feb-2019 22:02 Message #4735769
There is a possibility my daughter may have this, they are doing tests for various things so at this time we're not sure. That in itself is not a lot of use to you, other than perhaps, to let you know you are not alone and that this is a terrible illness to have.

My best wishes to you and I shall watch this thread with interest.
Hierophant  Male  East Anglia 21-Feb-2019 22:10 Message #4735771
I was diagnosed in 2006, thankfully mine is manageable and I have worked continually since 2010.
I had to change my life to accommodate it though, it wipes me out from time to time and I feel totally exhausted but I know how to pace myself.
One word of advice, avoid online fibromyalgia forums - I found them totally depressing, full of people talking themselves down and making themselves feel worse by blaming every little ailment on the illness.
A positive mental attitude is vital...
JustLyn  Female  Cheshire 21-Feb-2019 23:01 Message #4735777
Fibromyalgia and ME (myalgic encephalopathy) are closely related.
From your description it could be ME.
There's no diagnostic tests yet.
My daughter's had it 17 years. Most GPs don't have any training in understanding it and the national guidelines (NICE) are contested and undergoing being rewritten.
You could find out more through searching the ME Association.

As hierophant states, pacing yourself is important, but since there are so many variations of how people are affected, those more severely affected can easily be accused of not trying hard enough.
Judance  Female  Berkshire 22-Feb-2019 10:31 Message #4735793
One of my friends who has Fybro has been taking the cannabis pills (name?)

She has found that it is really helping her cope. She had to look about for a doctor who would prescribe it as her own wouldn't.
wonderoushen  Female  Gwynedd 22-Feb-2019 10:59 Message #4735795
I don't know if I have fybromyalgia, I've often wondered, I do take CBD oil for pain and it does help, I'm only on 2.75 the lowest dose, I think of it as being paracetamol level and you can get it much stronger over the counter, it might take a few days before you notice the benefit, some people don't notice the benefits until they stop taking it. But I'm definately more mobile, have better mobility and less pain.

Have you asked your GP to be refered to a pain clinic?
Victoriana11  Female  Buckinghamshire 22-Feb-2019 12:33 Message #4735807
(((hugs))) I know I cant do anything to make it better but I would like to send you some hugs.
moonlightglow  Female  Cheshire 22-Feb-2019 13:12 Message #4735815
Many thanks to everyone above for your replies Its interesting reading different comments thanks again

Mine went a lot worse after successions of back to back traumas after my mother died back in 2015

I have tried CBD oil maybe I did not have right strength nothing major changed

I also have ME chronic fatigue had that years the fibro I just thinks been a natural progressed

Amitryptaline/Pregabalin/Tramadol all suggested but I'm chemically allergic so there poses another problem for me

Also above can be additive

Most folks mobile uses all or most of drugs above

I'm trying to manage mine on just paracetamol and co codamol low dosage the latter of which the doctor has said aren't much good for fibro and might make it worse even
moonlightglow  Female  Cheshire 22-Feb-2019 13:28 Message #4735817
I have had major set backs for a year including constant blocked ear often goes with fibro EU station tube dysfunction

Carer came in with a virus so in all that's put me down again for most of last year despite my 5months previous efforts!to do excersis to try to stand up I'm currently at square one trying to build up again
BunnyGirl  Female  Buckinghamshire 23-Feb-2019 09:00 Message #4735874
That was a bit negligent on the carer lol should have been more careful.

Hope you reported her as she made you feel worse and should have known better

I will send you some hugs and flowers. Only virtual tho but hope it makes you feel better that
people are thinking about you lol
JustLyn  Female  Cheshire 23-Feb-2019 10:12 Message #4735875
The carer probably would have lost her wages if she didn't turn up for the shift, and probably cares genuinely not to let you down. Probably didn't get any training or support in risks of viral illness to patients and whoever employs her probably doesn't care. A bit of a double whammy if the person was complained about.

Wonder if I can sue a couple of patients who turned up to a routine appointment and infected me with flu when there are signs all over the place not to come into the surgery if you have colds and flu.

Still, I am as guilty as anyone, hate staying off, no-win situation, damned if you do and damned if you don't. At least I get sick pay.
Lyras  Female  Lancashire 25-Feb-2019 19:27 Message #4736127
Hello Moonlightglow,

Sorry you have been struggling with this condition, I was diagnosed 15+ years ago & up to 5 years ago I controlled it with exercise, diet & tried to be as positive as possible, unfortunately I lost 4 members of my family in such a short space of time which has knocked me back, I too find days difficult, the pain in the whole of the body is excruciating, I suffer with dizziness (which nobody can figure out why) I know what has set mine off but trying to get my head in the right place is difficult...I know what I need to do to get back on track but until then I have to be in a good place...

I have tried different alternative medicines over the years some have helped, for the pain I have used Celafen cream, its a muscle & joint rub does seem to work & your not feeding your body too many pain killers. Diet is a must, certain foods help with inflammation, Turmeric is a good one to take, Vitamin D also...can I ask are you under a specialist with this condition? I used to see someone, but NHS funding has made it difficult for this to happen now, they put me on a programme to see how much I was doing in a day/week & was told to rest in between which is difficult because you don't wish this to take over your life completely but it can do..there is a lot of information out there & sharing is good because you get to hear how other people have dealt with this condition too. If you ever want to talk about anything please don't hesitate to send me a quick message.
Sending healing your way!

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