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Spooning into summer - life with chronic pain & fatigue.

(1000 Posts)
Grockle Sun 14-Jul-13 07:58:50

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

I would guess they are similar, they are done by the same outsourced company. Will let you know what they do if they ever turn up!

Saw my GP today, who confirmed that in her lowly GP opinion, my prolapse is still there, it has not miraculously cured itself. She is waiting for the consultants letter to see what we do next. I told her I would be applying for my blue badge direct with the council after all this shit with capita and she said to give them her name and she will make sure they give it to me. And she also read out everything she put in her letter to capita about my pip application. I love her.

Hang on, just reread that. They are giving you no money because their waiting list is to long?! For fucks sake, that is ridiculous!! angry

Grockle Thu 07-Nov-13 20:55:45

The whole thing is ridiculous. I can't believe that angry

Thank you for the good wishes.

CFSKate Sat 09-Nov-13 21:52:37

I think I posted before about Karina Hansen, an ME patient who is locked up.
There is an update from her parents here. They are not allowed to see her.

Oh for fucks sake. Have just spoken to capita now, and have a third appointment for an assessment, just this time I have to get to Cardiff for it. I am fucking sick of it all.

candycoatedwaterdrops Fri 15-Nov-13 18:22:44

Oh Beyong, that's so annoying and ridiculous. I'm sure they do it to put people off applying!

I reckon you're probably right. Luckily its a week that my mum is home so she can take me and watch the kids, so much less difficult than it could be. On top of that, I've found out today that DS has been turned down for both of the local nurseries, so the council expect me to somehow get him six miles to the one they have offered instead. Shit day all round, really.

candycoatedwaterdrops Fri 15-Nov-13 18:48:53

Can you appeal the nursery decision on grounds of your disability?

Don't think so, but am certainly going to try anyway! What's ridiculous is that there are places available closer than what has been offered, but god knows why they didnt offer them?!

candycoatedwaterdrops Sun 17-Nov-13 18:34:37

It's been quiet in here lately, how is everyone doing?

DampDudes Thu 21-Nov-13 13:09:30

Ah. So this is where you're all hanging out. I think I just confused everyone on 'General Health' with my random spoon thread www.mumsnet.com/Talk/general_health/1917850-Who-took-all-my-spoons

Just struggling atm. Been a long time. Just need to talk to people who get it.

Weyhey, my blue badge application has gone through, now I don't have to worry if there isn't a p&c space available wink

Hope everyone is okay smile xx

DampDudes Mon 25-Nov-13 06:25:10

congrats on the blue badge. They're fab x

CFSKate Mon 25-Nov-13 12:07:17

If shopping at amazon, starting here will help raise funds for ME research, such as this drug trial.

CFSKate Mon 25-Nov-13 12:14:22

If you look on the first page, I have posted what I think are useful links for ME. But I know not everyone here has ME, so I thought I would ask you to post what you think are the best links for your condition, then when we start the new thread, they can all be posted together easy to find. So if you have any good links please post them!

KinkyDorito Wed 27-Nov-13 06:36:43

Super stress at the moment and everything is hurting because of it.

What I hate about fibromyalgia is that you look totally normal on the outside so that people just raise a cynical eyebrow at you when you say that you aren't well. I really, really wish I could spend a few days in bed. Not sure it would make it any better though.

sad

Fed up.

KinkyDorito Wed 27-Nov-13 06:37:46

Oh, and a question. Does anyone get foot cramps because of fibro? I had them on and off for a few hours yesterday. Never known them to go on that long before.

Has anyone here tried 5-htp? I wondered if it would help with me sleeping through the early morning pain. Tried it last night and although I woke up lots I did get back off to sleep again. Dreams were rather bonkers though!
Dopey this morning, only seem to have half a brain.

candycoatedwaterdrops Wed 27-Nov-13 18:41:38

Kitten Not heard of 5-htp, is it a natural thing?

Kinky I understand the invisibility factor. Although, I do look ill when very flared up with my rheumatoid, right now, I 'only' have joint symptoms, not the systemic ones, so everyone keeps telling me how much better I look. I feel like shit but I don't look like it, so yay! hmm

----------------------------

I feel much better overall in terms of no more low grade temperatures, fewer aches and pains, less fatigue and less joint involvement except for my fucking feet and ankles. It's been decided that I will have a 2 hour MRI scan of both feet and both ankles to see if the pain and swelling is my 'usual' active RA or if my joints are getting more damaged. It feels frustrating that the anti TNF is helping everything except my fucking feet and ankles. I feel incredibly disabled by my condition despite it being better than it ever has done before which makes no sense. confused

Grockle Wed 27-Nov-13 19:03:21

Marking my place... List this thread but will go back & catch up.

Kitten, do you reckon it would make my kids sleep? grin
I don't have chance to sleep long enough for pain to wake me atm, they're up before 5 every morning! <argh!>

I'm in my first non-flare since diagnosis, but not really noticing much of a difference tbh. Physio said it looks like chronic synovitis. Which confuses me a little, as I thought normal arthritis was synovitis? But proper rheumy appt next week so can ask them, and hopefully my pip medical too. (Wondering if my max dose daily naproxen is making my joints look less painful than they are? Who knows)

I have foot cramp at least once a day! I have swollen toes though, so had attributed it to that?

My mum had the kids last night so I had 12 hours sleep, was great. Only trouble was, I had completely seized up in the morning.

Grockle Wed 27-Nov-13 19:09:27

Good news, beyond. When I'm well, I don't use my blue badge but when I'm not well, it enables me to get out when I wouldn't otherwise be able to.

sorry you are struggling dudes & kinky

I was thinkng today, how well I am and that I am so glad to be functioning at about 60% of my usual level. But it made me realise how much I have adapted to this & how my life has changed. It's all such an effort.

I have just started seeing a health psychologist to help me work out how to manage all this. She works with cancer patients & amputees etc. Not sure how good it will be but am hopeful it will help. Still waiting for referral to ME clinic to come through.

Sending you all spoons.

Matildathecat Wed 27-Nov-13 19:47:19

Hello all, just butting in quickly to say how helpful I have found the Pain Management course I'm doing. Now done seven of eight sessions. It's run by our local hospital Pain Clinic and led by a psychologist and a physio.

Lots of different conditions, all in pain. Our original group of 12 is now 8, so clearly not for everyone.

The emphasis is learning to manage our lives with pain, accept, pace and most of all keep active and engaged. Lots of mindfulness. So no cures but my god, as the weeks have progressed there has been such a shift in the attitude of many of the group. It has also led into other pathways like the local authority exercise programmes for the disabled. So much on offer.

I am hoping to be referred into the Alexander Technique programme which is free and one to one. Great! Also getting one to one counselling with one of the psychologists.

Anyway, just reporting back in case anyone is considering or interested. Most gps either don't know about this or are not up to date about it.
Hope that helps.

It's an extract of a plant Candy, it's supposed to convert to serotonin and then into melatonin. I went into the health food shop asking for melatonin and came out with that. I'm not sure about it I've been feeling really extra dopey today and really struggled to keep going.

magso Wed 27-Nov-13 22:57:09

Kitten I take 5 HTP. It is part of my attempt to get better sleep, as the book I read was quite clear that sleep needed sorting (From fatigued to fantastic). There is some science behind it. I am always dopey and half brained in the mornings nowadays!! I think it helps. I stopped taking it for a while ( ran out) and things got worse so I assume it helps.
My back has been keeping me awake recently more than usual. Pain is so tiring in its own right. Good your pain management course has been helpful Matilda. The CFS/FMS course I did was run by the pain management team and was very helpful.

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