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Original poster

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:
Original poster
Grockle · 14/07/2013 08:02

Whoops! Blush

spoon theory here

OP posts:
fuzzpig · 14/07/2013 08:23

New title rocks! Love it :o

belleshell · 14/07/2013 10:32

hello my fellow spoonless virtual buddies.......

KatyMac · 14/07/2013 10:45

Morning

I'm having a bad patch so I thought I'd check in here

daisychicken · 14/07/2013 11:17

Hi, am also having a bad few days again.... did a bit much yesterday plus the heat isn't helping..

CFSKate · 14/07/2013 18:04

Forgot 25% group for severe ME sufferers

Original poster
Grockle · 14/07/2013 21:37

Nice to see people posting Smile

I've had a good patch recently. Pain-wise, at least. Insomnia is BAD & restless legs/ arms/ brain fog are not great. I'm wondering if the reduction in pain is linked to my being wheat-free for 4 weeks now. I hope not because I'd love a nice baguette with loads of butter. Gluten-free bread just isn't the same.

Mentally, I've been in a bad way but I had a bit of an epiphany today & am trying very hard to be positive, calm & smiley. Not being in great pain makes that much easier.

Spoons to you all.

OP posts:
newestbridearound · 15/07/2013 08:20

Hello, I haven't posted on the spoon thread before now but having a really bad patch with my ME at the moment so thought I'd say hello Smile

gallifrey · 15/07/2013 08:24

Grockle I am pleased to hear that you are feeling better and more positive now xx

buildingmycorestrength · 15/07/2013 19:49

Hi all. Glad things are not to terrible at the moment, Grockle.

Hello newbride. Thanks

Had guests at the weekend who took well over an hour to say their goodbyes. I was desperate to go lie down but keep thinking, 'Oh, they're going now, I'll just hang on.' Urgh.

Solo · 16/07/2013 12:14

C&P'd from old thread. Didn't see the link!

Hi all. I hope you are all ok.

I returned to work yesterday. I am shattered tbf. I am being sent to the OH people which I hate doing! but I have no choice :(

Many extra spoons to you all.

Matildathecat · 16/07/2013 13:07

Hello, new poster here. Long history of prolapsed disc, failed surgery, finally getting second opinion and diagnosis of severe nerve compression due to scarring from the first surgery. Second op to remove the scar tissue and decompress the nerve...no improvement and MRI now shows even worse scar formation. Now been told to go down chronic pain management path. Had some stupidly expensive injections last month which have helped a bit and have more booked for Sept on the NHS. Shed loads of drugs.

Anyway, I have been offered a place on a Pain Management group which involves all sorts including CBT. I will definitely go but was interested if anyone has done this kind of thing and what they got from it?

Hope you are all having a good day and look forward to chatting here.

magso · 16/07/2013 13:44

Hi Matilda. Sorry your surgery was not successful. In our local hospital the chronic pain is combined with the CFS/FMS team. I have CFS. I attended 3 1:1 sessions, which helped me learn to pace (not do too much)and accept etc and have got less unwell during that time, so I think it probably did help. There was also physio but I did not get that far due to another condition (PoTS).
Grockle hope your slightly better patch continues and becomes and even better.
Has anyone used TENS for back pain? I have had back pain on and off for decades, (currently have a minor facet lock up causing pain on breathing- a regular occurance but I can't see the chiropractor till next week) and have just bought a small semi disposable stick on TENs patch (half price in coop pharmacy). I have never used one before and do not know how to set the level. Do you set it to be just detectable or does it need to be much more obvious? I tried the later yesterday and I it didn't seem to help.

belleshell · 16/07/2013 15:59

Hi to the newbies, and welcome, we are a lovely bunch here, even if I say so myself.....Grockle :D glad things a little easier!!! xx
Magso, with tens start off low and increase it until its unbearable, I used it in labour....to start with couldn't tolerate greater than setting 3 towards the end I was on ten and couldn't feel a thing, oh the joys of child birth!!

fuzzpig · 16/07/2013 18:09

Hi all :)

Just wanted to say I have now settled on 12hrs a week instead of 16. I had been umming and aahing for a while but I just decided to make the bloody choice - even if it's the wrong one - and get on with it. So, I will now only be doing 3 4hr shifts a week instead of 4 - and crucially, there will always be at least one day between each shift. That is going to make a big difference I think especially if I get a bug (since that's when I end up off sick, as the CFS makes simple illnesses so much worse) - I will only ever have one day to get through before I can rest, or if it is really bad hopefully I will only need one day off sick. It starts immediately which I was surprised about but it's good as I no longer have The Fear of doing consecutive days.

Matildathecat · 16/07/2013 18:19

Hi Magso, I have used Tens quite a bit. As said already start low the increase. I can tolerate it quite high but found it quite an annoying sensation and kind of reminded me I was in pain. I prefer more pleasant distractions. I have a fab physio/ Pilates instructor who gives me a wonderful massage then back targeted exercise. It's a bit expensive but I'd go every day if I could afford it. I also love swimming so go to the pool a few times a week and do a combo of swimming and hydro exercises...did I mention I used to be super fit before this saga?!

I did listen to music on my iPod in the wee small hours when in agony, strangely enough I now hate all my former favourite music. Would insert sad face but don't know how...

educatingarti · 16/07/2013 20:36

Marking place on new thread

magso · 16/07/2013 21:51

Thanks Belles and Matilda, I will try turning it up. I think my back is playing up because I missed pilates.
Fuzzpig hope your new hours work. You can always increase again if you need to.

crashdoll · 17/07/2013 08:19

Hi spoonies! My hospital have applied for funding anti-TNF treatment for me, which I am strangely excited about. I feel really hopeful that this is the right way to go for me. I'd cross my fingers but they're very swollen atm.

Original poster
Grockle · 17/07/2013 09:36

Hello.... Welcome, newbies. Smile

my positiveness seems to have waned somewhat overnight. Confused I feel quite unwell & so exhausted. Trying to drag myself to the end of term. A couple of weeks of almost no pain, some energy & feeling quite bright & chirpy was lovely though. I just wish I know what had caused it so I could repeat it. I stopped taking all my meds a few weeks ago because I felt like they weren't helping & were just making me fat & sluggish. I felt amazing for a while but now I feel like I am having a crash. So, do I medicate or not? Do I start eating wheat again or stay off it?

Well done, fuzz. I think if you ever decide 12 hours is not enough, it's easier to build up from that than to reduce hours so I think you have done the right thing.

I have tried TENs in the past but it either did nothing or gave me painful electric shocks! I don't know if it was me or a rubbish unit or what. I know people love them though.

OP posts:
educatingarti · 17/07/2013 12:21

Struggling to get going today Sad

Solo · 17/07/2013 12:27

I have not made it to work today :( still in bed actually Blush), I'm sooo tired.

I am wondering if the OH people might retire me medically or make me medically incompetent...? anyone know anything about these?

Matildathecat · 17/07/2013 13:41

Solo, can you indicate what type of employment you have? I may be able to clarify a few bits for you.

Solo · 17/07/2013 14:16

I'm a prison officer Matilda. and I hate to say it, but my symptoms don't make me a good one currently :(

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