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Spoons! Support for those with chronic pain & fatiguing illnesses

931 replies

Grockle · 03/04/2013 13:48

Spoon Theory here

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fuzzpig · 04/06/2013 21:41

(((gentle squish))) :( wish I knew what else to say x

belleshell · 05/06/2013 12:21

Hi All, im back from our "holiday", and as much as it was so nice it was bloody hard work. im knackered kitchen looks like widow twankies laundry!!! its my 40th at weekend and we have nothing special planned, im in Edinburgh next week with work, then camping.......why oh why do I do it, I will be bedbound by end of the month...

Grockle I am so sorry you have been pissed about, im sure they do this so we just give up because actually the application is so stressful we wonder is it worth it...the truth is yes I think it is, so stay strong!! (if you can)

Fuzz the wedding sounds lovely

hi and spoons to everyone else.

xx

magso · 05/06/2013 15:05

Glad you survived your holiday Belleshell, and best wishes for a lovely restful birthday at the weekend! Holidays wear me out too.
Pleased your wedding attendance went smoothly Fuzzpig.
I had a massage today! Feel good! No doubt my mood will come down to earth shortly when Ds erupts from his school bus!

Grockle so mad on your behalf! Its worse because it is ill people they are messing around - and you deserve it least of all. Hope you are holding on there. (gentle hug)

CFSKate · 07/06/2013 07:52

Last week there was an ME conference in London, here is a report, ME looks like immune problem.

belleshell · 07/06/2013 14:42

Right today is the 19th anniversary of my 21st birthday.......I have had ME for a 1/4 of my life...I think if im lucky I might have hit half a life time today.......... I need to change my attitude. i cant fight this shite. I need to accept I am what I am in everyway, and be happy..... cake bubbles an chips it is....xx

Grockle · 07/06/2013 20:03

Interesting... I read something similar about Fibro being an immune condition. And the sypmtoms of both ME & Fibro are similar to those of Lupus (SLE) which is an autoimmune problem.

I don't believe anything with such extensive & debilitating symptoms can remain so poorly understood for much longer. They still seem to be in the 'in your head' category Sad

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Grockle · 07/06/2013 20:04

Happy Birthday, Belle.

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crashdoll · 07/06/2013 21:33

Happy birthday, Belle! Thanks

Sorry to hear the DLA tribunal, Grockle. I'm a student social worker and deal with so many anxious service users who've been messed around this way. It's incredibly unfair. Sad

fuzzpig · 07/06/2013 22:19

Happy birthday Belle! Wine Thanks

I think you're right about accepting the illness. It is NOT the same as giving up. It is just learning to work with what we've got. :)

I have hit a wall today (metaphorically of course!) - I think this weekend will be tough, I'm working tomorrow and DH is on Sunday. I was fine at work this morning, had a great time running our baby singalong session, and was then clearing up when BAM it hit me like a tidal wave. It is scary how quickly the fatigue comes on isn't it?

The rest of the shift was a struggle, and then I had to pick up the DCs at 3 but we went to the playground (very near) - at least they are old enough to play on their own so it's not too much work now, and totally worth it to tire them out a bit and assuage my guilt about them not getting enough exercise! I got DH to meet us there too and carry their stuff home which was helpful.

Interesting about the immune problem. I have read some things to that effect and it did make sense. I really hope it comes to something - while I do think (IME anyway) a lot of health professionals are coming round to the idea of ME being a physical illness, it certainly isn't filtering down to the general public yet and I don't think it ever will unless a concrete explanation is found.

Too tired to read the link tonight. I have been having major trouble sleeping lately, nowhere near what some of you have to deal with though. I haven't felt this depressed for ages (purely because the physical illness has been, in some ways, a distraction!) - the other day I actually felt 'too depressed to work' IYSWIM - I did go in but despite feeling physically well I really didn't want to, I just wanted to stay home and wallow and cry about how shit my life is! My short term memory is declining at an alarming rate too. I have no idea whether I've been missing my Ami or taking double some nights. Need to start using my pill organiser thing again.

In other news... I only found out from mum as I haven't spoken to dad for a week but my nan's biopsy results showed lymphoma :( apparently it is very treatable so it's not a dire prognosis but I guess it depends what nan wants to do.

On a lighter note - wanted to share this big bang theory quote which sums up how I think myself to sleep (or attempt to!) - I run through lists.
Howard: Please, I'm begging you, go to sleep!
Sheldon: I'm trying, I'm counting catwomen!
:o

Sorry for the essay, really must try and sleep now!

Grockle · 08/06/2013 07:18

Sorry about your nan, fuzz. My Dad had lymphoma & it was horrible watching him go through it. He had aggressive treatment & surgery & he's doing really well now. That was 7 years ago & he's in his 70s. So, scary as it is, hopefully your nan will be ok too x

OP posts:
belleshell · 08/06/2013 17:25

Does anyone wanna swap legs!!

Grockle · 08/06/2013 19:06

Don't think mine'd help, Belle. I can't even use my crutches/ walking stick now because my hands cramp. I'm scared I'm going to end up housebound.

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crashdoll · 08/06/2013 19:53

My legs are ok, it's the joints in them that are f'ed up beyond belief, so I'm not sure my legs would be any good for you Alternatively, my left arm is in fine shape. I am happy to share my left arm for a few hours. Smile

Does anyone here have joint damage and find it just so excruciatingly painful? I can't get on top of the pain. My rheumy just sort of shrugs at me and tells me to talk to my pain management people and my physio. My GP offers stronger meds that make me fall asleep and thus, unable to study or do my job. The TENS is crap, ice helps a bit, heat is a no-no. Lying in bed helps a bit but there isn't a bed at work!

Grockle · 08/06/2013 20:21

So, so far we have 1 left arm to share between us? Grin

I was going to ask something along the same lines... I have no joint damage but what happens if I go back to my GP about pain. It hurts. Ami & tramadol ease it a little but it's there all the time & it hurts. Do I really have to live in pain forever?

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belleshell · 08/06/2013 20:40

my left arm is ok too......so that's 2 left arms......

My pain relief is shocking atm...I tored switching co codamol for codeine....omg what a no no....I took ami 50 mg on holiday because I wasn't working etc next day..back to 25 mg, codeine isn't working, hence today my legs are in protest because I have walked approx. 1 mile tops, with lots of stops!!

maybe we need to learn to walk on our hands!!

crashdoll · 08/06/2013 21:27

Tramadol doesn't do anything for me, strangely enough. Co-codamol (30mg/500mg) are my poison of choice. I can't take amitrip nor noritryp due to bad reactions (think ambulance and A&E - not fun). I know some people take gabepetin or pregabalin. Not sure if that would be an option.

I am miserable as sin tonight. Sad Just lonely and wish I had the strength to go out and be sociable, instead of sitting in my pjs at 9.30 pm on a Saturday night.

gallifrey · 08/06/2013 21:54

Hi everyone!

My left shoulder gives me loads of pain and I can't straighten out my right arm properly after breaking my elbow falling off a horse! I fractured my tibial plateau falling off of another horse and had to have it pinned and plated plus a bone graft from my pelvis as I had compressed my tibia by 2 cm. I have cervical spondylosis and herniated discs in my lower back, had a bunion removed on my right foot so I have a pin in there too. In fact I have broken every limb!!

Talking of autoimmune, the last time I had a blood test I was ANA positive which does indicate an autoimmune problem, this was done by my rheumatologist who was the person to diagnose me with fibro, although on my notes it also says polyarthralgia.
I have no idea what this means and neither did my GP when I asked him :(

Seem to be ok at the moment, have cut down the amitrip to 20mg at night, along with co codamol 30/500 - 2, 4 times a day and naproxen 2 twice a day. Giving up with my current GP and hopefully we will be moving soon so I will get a new doctor and maybe they will give me a bit more help.

Love and spoons to all xxxx

crashdoll · 08/06/2013 22:01

gallifrey Ask for some more blood tests, there are lots of more antibody tests that can give a more specific answer. Did you mean you don't know what polyarthralgia means?

fuzzpig · 08/06/2013 22:12

I could do with swapping my left wrist actually - still hurts from where I fell the other week (although I'm sure the right one hurt more at first?! Confused) - wore a support at work today. Can't weight bear or lift with it. I was just going to wait it out but my colleague said when her DD had similar issues it turned out to be a fracture! So I'd better make an appointment.

Grockle · 08/06/2013 22:45

Hope your wrist is ok.

I'm also home on a Saturday night. Alone. Well, with DS. I've done my tax credit renewal & an online grocery order. Exciting, huh?

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gallifrey · 08/06/2013 22:51

I only know what I have googled about polyarthralgia my doctor just shrugged when I asked him!

Grockle · 08/06/2013 22:56

Doesn't it just mean joint pain?

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crashdoll · 08/06/2013 23:00

According to my rheumatologist, it means joint pain in many joints - it can be caused by anything really from inflammatory arthritis to just generally having achey joints!

magso · 09/06/2013 16:45

I think polyarthralgia is as you say -pain in many joints. I had this written somewhere - i.e. pain without evidence of major joint inflammation and damage (arthritis).
I don't have any parts good enough to loan out just yet, but I am doing quite well, so have 2 almost OK arms and somewhat wobbly legs - its the bits that hold it all together that need upgrading. However have just walked around Windsor Castle, so by tomorrow legs will be extra wobbly.
Fuzzpig it does sound as if you need to get your wrist checked out.

gallifrey · 09/06/2013 18:49

so not really a diagnosis as such then?

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