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Spooning into summer - life with chronic pain & fatigue.

999 replies

Grockle · 14/07/2013 07:58

A lovely, supportive thread for those of us suffering with a range of illnesses & syndromes that cause chronic pain & fatigue, amongst many other things.

Lots of advice shared but also a place to chat & laugh with people who understand.

theory here www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

OP posts:
giraffesCantMakeResolutions · 10/02/2014 20:56

GROCKLE the op of the thread hasn't been feeling to great recntly. I don't know if she is still lurking but want to send loadsa luv (ha - how un MN!) and we are all here if andf when you need us my dear x

candycoatedwaterdrops · 10/02/2014 21:01

((((Grockle)))) sending virtual gentle painfree hugs! Also Flowers and Cake

frugalfuzzpig · 10/02/2014 21:16

Ah grockle :( Flowers ((((hugs))))

Raggedy good point on the career thing. I am really really lucky that while I love my job it is something I can leave at the door. I have done a bit of stuff at home recently (I initiated a display project from scratch so it was mostly arty stuff and great fun) but mostly it's not something you have to think about when you aren't there. And I do have great colleagues which makes it so much easier. So although there's lots of things I'd like to consider, I am happy to just tread water for now! It is something I could progress in with qualifications but I don't want to automatically go for that just because I'm already there IYSWIM (especially as jobs are very very scarce for real librarians!)

BeyondTheLimitsOfAcceptability · 10/02/2014 21:25

Candy, I'd got down to healthy weight just before i got ill after two close together pregnancies. Got rid of all of my fat clothes.

Since this summer, I've put on three stone where I havent been able to do anything. I look and feel disgusting. :(

Had my initial assessment with adult services today, hoping that will make a difference. If i'm not so tired from the basics, maybe i'll have more energy to go swimming or something?

BeyondTheLimitsOfAcceptability · 10/02/2014 21:31

And bollocks, just realised i have a rheum appt this week, no way to get there, and will have to take both of the kids too. Fucks sake.

CFSKate · 11/02/2014 11:12

giraffes - tonsillitis and adult onset asthma - I don't think I have read anything about that. Do you have allergies as well?

raggedymum · 11/02/2014 11:46

Hugs, grockle Thanks

Me too, candy. I've been thinking lately the only way I'm going to loose weight is to starve myself, and that's not going to help on the health/energy front!

magso · 11/02/2014 15:07

I have put on weight since having CFS. And that was after I came off the oral corticosteroids. I used to be very hyper and active (and slimish) but now am limited on what I can do so have been putting on weight. I have been a little better over the last few months (and my POTS is less troublesome) so have been going to pilates classes but I have to stop each exercise sooner than the others in the class. I think I eat more than I need because I feel so weak and pre illness that was a sign I needed to eat. I read somewhere that eating a lowish carbohydrate diet was probly best for CFS - ie eat the stuff that is good for you (veg protein fats) but limit the less good stuff (refined carbohydrates)
Hope the wheat free is going well Giraffes. I was wheat free for a few months but stopped once the summer holidays came along and it was trickier with ds at home. Is there wheat in chocolate?
(Grockle)

raggedymum · 11/02/2014 15:21

Interesting point, magso, about eating because of feeling weak. I think I do that -- I'll feel faint and think, oh, I need some food. But food doesn't actually help. (I'm feeling that right now, in fact...)

I've just been invited out this weekend and think I probably can't go :( It's another friend that I see maybe 2 times a year, if that. But I completely exhausted myself last weekend to the point of needing to take time off work by doing toddler group plus a friend coming over. I don't think I can do anything this weekend. And it would be an hour train plus a bus and then some walking there and back, and I think I couldn't even do getting there much less socialising. I last saw her a year ago. I hate this.

MoreBeta · 11/02/2014 15:37

Hi all

Didn't know this thread existed. Been suffering auto immune condition 20 years and wake every night and through the night in pain.

Interesting about Vit D as I have mild osteoporosis too.

I think I might have fibromyalgia as I have had chronic pain in muscle and joints getting worse over last two years. Not sure what to do really. I haven't been to GP but fibromyalgia is linked to autoimmune conditions. I believe there is no treatment anyway and not sure it is worth bothering GP but am in a hell of a lot of pain in the morning and if I do any physical work. I also am exhausted and find it hard to concentrate.

Is it even worth getting a formal diagnosis?

magso · 11/02/2014 19:38

Hi Beta! I think it is worth investigating, yes. It may be that your eventual diagnosis is something that has few treatments - but what if it transpires that it is something easily treatable? I am not a doctor but have found it helpful to research CFS myself so I have a better idea of how to get more well.I needed the DX to know where to start. I read that low vit D levels in the body can cause pain and joint trouble. The Gp can serum D levels. Mine was on the low side so now I take a vit D spray.

MoreBeta · 11/02/2014 20:23

magso - thank you.

Can you tell me what does fibromyalgia actually feel like?

I literally hobble and limp when I get out of bed. I can barely walk because my muscles and joints hurt so much. I sleep very badly.

I cant tell if I also have CFS as well or if I am just exhausted from not sleeping.

Vit D deficiency is an issue as I have non coeliac gluten intolerance that has triggered all sorts of problems and I absorb vit D well. I take a AdCal D3 supplement but never heard of a spray.

I am trying to work at the moment but find one day working has to be followed by one day of rest. I get brain fog a lot.

MoreBeta · 11/02/2014 20:24

... and I don't absorb vit D well

magso · 11/02/2014 22:00

Sorry I have CFS so not fibromyalgia. I also get joint pain and myalgia, but my main symptom is this heavy dreadful ill fatigue that is like always having the flu. I was given Adcal when I was on high dose corticosteroids, but stopped them together. My Gp suggested I buy my own vit d because of the confusion at the time. I settled on a high dose sublingual mouth spray, because I am not good at swallowing tablets.

BeyondTheLimitsOfAcceptability · 11/02/2014 22:49

Same kind of symptoms as mags, but i have psoriatic arthritis and hms. Dont know if that is helpful or not? My psa is definitely psa and not a similar issue though, psoriasis is bad too and affected joints ae textbook. First and ring finger for eg, but middle and little are fine.

In your shoes, i'd do a shitload of reading up and diagnose myself, then see gp/ask for rheum referral for them to confimr Grin
(My hypochondria record is 100% correct)

MoreBeta · 12/02/2014 09:50

Beyond -"My hypochondria record is 100% correct"

Same here. I diagnosed myself with non coeliac gluten intolerance, then osteopenia (early stage osteoporosis). My GP went Hmm then sent me for tests and I was right. I am always right and I never go to my GP without knowing what is wrong with me first.

Like many on the thread I suppose I am tired of fighting. I have so many symptoms from pain, to numbness and tingling in my fingers/toes, today I am dizzy and can't stand. I know there is nothing they can do - its more a question of what I tell my GP now. My consultant is brilliant and very supportive but getting past my GP for routine stuff is a challenge.

CFSKate · 12/02/2014 16:13

Fibromyalgia and ME/CFS Labeled Mental and Behavioral Disorders by WHO

Throughout this thread I have posted various links to evidence that ME is a physical illness. Despite this, some still insist it is a mental disorder, and if they have their way, ME and fibromyalgia will be classified as mental/behavioural illnesses. Other illnesses will be too.

candycoatedwaterdrops · 12/02/2014 18:35

I have to say, it really doesn't both me if one of my conditions has a psychiatric aetiology - I have Rheumatoid Arthritis and Fibromyalgia. It is not saying that the symptoms are not real, just that the brain chemistry related to the pain/illness signals are more related to the psychiatric field, rather than the physiological field. All mental illnesses are physical illness anyway!

frugalfuzzpig · 12/02/2014 19:00

Bloody hell Kate, just when I think understanding is improving... :(

Hi MoreBeta, welcome :)

I am feeling crap today and have had to change my appts tomorrow to phonecalls instead. Got another throat infection I think and muscle aches are horrific. Angry

CFSKate · 12/02/2014 19:23

candycoatedwaterdrops - I know what you mean about brain chemistry etc, but I keep seeing ME patients sectioned as mentally ill, and given treatment that makes them worse, and then they die. Then the autopsy shows they did have physical problems after all. Meanwhile those ME patients who are treated as having an autoimmune illness and given rituximab, 2/3rds of them improve, some seemingly completely cured.

candycoatedwaterdrops · 12/02/2014 19:48

Kate As someone who currently works in the MH sector and often with sectioned patients, I agree that a psychiatric ward would be detrimental to a patient in certain circumstances. In my completely unprofessional opinion, I often wonder if there is a group of people who are dx'ed with CFS/ME/Fibro (and similar) just have not shown signs of a different condition, thus they are misdiagnosed. The trouble is that without a distinct set of clinical characteristics, mistakes will be made, symptoms will, wrongly, be attributed to the diagnosis and harm may be done.

frugalfuzzpig · 12/02/2014 19:56

For me it's the fact that many professionals see the psychiatric categorisation as meaning it's 'all in our heads' :(

BeyondTheLimitsOfAcceptability · 12/02/2014 21:47

Yy to all points made!! I had the same symptoms as my psa just without obvious swelling for years, those that correlate hugely with cfs. I remember lying in bed unable to get up when me and dh were first living together and thinking "this must be ME, it is not normal", but too used to being told i was a drama queen and hypochondriac by everyone to even go to the doctor. It was only after ds2 that it became obvious that it was in fact psa. Psa in the absence of obvious swelling causes the same sort of symptoms as a million other illnesses, as does my hms too! So were my earlier problems caused by the psa that just hadnt made itself obvious yet? And how about the hms? Thats been there forever, just not diagnosed until i was already seeing a rheumy for the psa. I've had pain in my one knee forever, now i know about hms i can see that it is because my knee bends backwards!

But (getting to my point!) if its taken me 28 years to get this far, as someone whos quite clued up on the medical side, to convince people that it wasnt made up. How can it be right to write off everyone with cfs as it being in their head, even if it turns out it is? If it one day turns out to be caused by a fault in the brain chem, locking up someone with it on a psych ward seems no different to me to locking up someone born with the wrong gender. Not sure if thats a good comparision, but hope it explains my point :)

BeyondTheLimitsOfAcceptability · 12/02/2014 21:54

Ps, i have been changed over to mtx. Cant start taking it til i get back from holiday, just in case i react weirdly. But i have the script ready :)

And i've booked a wheelchair with the red cross, to take with me on hol. Dh not looking forward to the idea of pushing me around in 40' heat Grin

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