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Spoonies... friendly support for anyone with chronic pain & fatigue

(281 Posts)
Grockle Thu 10-Apr-14 21:47:55

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.

Spoon Theory Here

Old thread

MiscellaneousAssortment Sat 22-Nov-14 16:57:35

Wise words magso I have a weird thing where I think I'm being pathetic and it's all in my head ... When its because I'm physically ill.

As soon as I'm not in an absolute crisis I always do that. I wish I would remember!

I think it's because I'm used to ignoring pain and physical suffering, as growing up I was told I wasn't ill and nothing was wrong, so thought the constant pain and struggle was just what everyone had.

It's hard to change a lifetimes thinking.

And the worst thing is because I think it's all in my head, other people do too sad

The only reason I realised that's what I was doing this time is because I felt better for a couple of days and realised by contrast how ill I still was.

magso Mon 17-Nov-14 22:56:04

Miscellaneous you have been very ill, so it is quite normal to need a lot of time to slowly recover. I know it is not easy to wait for your body to recover. The most helpful advice I was given after spending some time in hospital very ill, was that it would take at least a year to recover from being that ill. Then I stopped worrying about not bouncing back quickly enough. Sorry you are feeling so rotten.
Germ girl I hope you are feeling better today.

MiscellaneousAssortment Mon 17-Nov-14 09:23:42

Hope everyone's ok and gently respiring.

I'm feeling am very low. I can't seem to bounce back from the pancreatitis stuff. I just feel wrecked and rubbish and v miserable.

I'm hating myself for not getting on with life again. I can't seem to do anything and there's alot of stuff that's incredibly urgent and I'm heading into disaster by not addressing them.

Germgirl Sat 15-Nov-14 17:24:58

Hello everyone, hope you're feeling ok today. magso how is your wrist? Hope it's feeling a bit better & you're managing with the splint ok, I had a lot of wrist surgery a few years ago & it's such a nuisance, if you need to keep the splint on all the time if recommend getting a Limbo cast cover so you can have a shower without wetting it.
I'm totally 'meh' about my car now, after the initial horror of it. DH is going to TCut it & if that doesn't work I'll get it resprayed on my insurance, not yet though, just before i have to give it back.
Been in lots of pain recently, had a lot of morphine Thursday night, with the inevitable intestinal side effects sad been feeling sick & knackered since then, I keep retching! It's vile.
I'm just spending the weekend in bed really.
Meant to be going back to work in 8 days time!!
Anyway, I hope everyone is having a reasonable weekend.

magso Fri 14-Nov-14 21:10:58

Moan away Jumping. It can feel jolly lonely when you are stuck in bed feeling shattered. My family are far away too. It would be so much easier with frequent little visits, rather than longer trips, but that's not possible when its so far away. Fortunately I never have unexpected visitors - our house has had several years of neglect!

Jumpinginside Fri 14-Nov-14 12:01:17

Magso, hope you wrist is better soon and healls ok.

Misc, how are you? I hope you are feeling a little better.

Feeling awful today. I've had my parents staying for a few days and so I'm now totally and utterly exhausted. I wish they wouldn't invite themselves to stay at totally inconvenient times. I've got a busy couple of weeks ahead with hospital visits, so I need to be on top form. They have left me exhasted and unable to do anything. They just don't get it. I'm just hoping with a couple of days in bed I might just be able to manage next week. The only good thing is they live at the other end of the country several hours drive way, so I don't have to see them too often.
I really didn't need it this week, I always find hospital visits and dealing with doctors difficult. My parents just seem to stress me out more.

Hope people don't mind me moaning. Just feeling a little alone at the moment lying in bed exhausted and aching.

magso Wed 12-Nov-14 20:25:37

Mummyonabroomstick, I had lots of tests to rule out Lupus.
How are you miscellaneous? I expect you are still quite unwell. I think I was told for every day you spend in hospital acutely ill, it will take at least a week per day to recover (double that if ICU)- its still early days. Thats probably very out of date too! Hope work are being understanding at last!
Germgirl sorry about your car - its a very stupid mean thing to do! Why people do that I cannot comprehend. I scratched mine at the weekend, but it was my fault, I did not realise just how hard it was to see in blinding rain and with the streetlights out. Other car (a neighbours parked carblush) was nice about it, but I felt very stupid.
It seems I broke my wrist when I fell over nearly 3 weeks ago, so now have it in an awkward splint thing,(did not get it X-rayed till yesterday) which actually makes it hurt more, and certainly makes most chores very tricky.

MiscellaneousAssortment Wed 12-Nov-14 10:53:41

Hello there hope you're all surviving flowers

mummyonabroomstick Wed 12-Nov-14 08:33:12

Hey all, thanks for the welcome. It is strange magso hos some conditions come in pairs of threes: like friends that can't bare to be parted. No doc I've spoken to really knows why but now I'e gotta be tested for Lupus as well as apparently that was overlooked in my old surgery.

Germgirl: don't worry about venting I'll probably do it a lot too and kill threads as on top of everything else I'm dyslexic. I don't know much about kidney problems either but can sympathise as I'm sick of the pain I'm in too. Going to try to get the GP to give me stronger painkillers as over the counter ones won't work. The last surgery refused to prescribe me anything stronger in case I got addicted. You wouldn't leave a dog in pan so why leave a human in pain? Obviously the painkillers would have to be reassessed if and when I get pregnant though and yes it is great we have this new test now for AMH. Amazing what they can do now. Just worried sick about the results. I could get them as soon as this Friday. OMG. I'll be back on here to let you know what the results are. Should I post them her or some other place? (potential thread killer)

Germgirl Tue 11-Nov-14 18:56:47

Jeyes?! I meant keyed

Germgirl Tue 11-Nov-14 18:56:27

Hello ladies. I feel bad now! Sorry for moaning. And I'm glad I didn't completely murder the thread!
Bad day today. Some tosser Jeyes my car, I had to drive for ages to take MIL some clean pants in hospital & so I didn't dare take my painkillers. Home now & on the tramadol. I think the morphine will be making an appearance later too.
Sorry for moaning. Have a good evening

magso Tue 11-Nov-14 17:29:45

hi Germgirl and welcome, although sorry you are suffering. I think the limbo land of not knowing what exactly is causing symptoms is very hard - once you have a diagnosis you know where you are better and can start to adapt or whatever is needed. I don't know much about kidney problems, but we are a mixed bunch on here. I am good at killing threads too!

ItIsntJustAPhase Tue 11-Nov-14 16:50:25

Hello Germ, I have seen you about elsewhere. And hello mummyonabroomstick too. We all struggle to keep up with fast paced threads but you are very welcome here! Best to keep low expectations of how fast we will reply though. I only have CFS and am still a moany old cow about it, without the phenomenal amounts of pain others on this thread have. So yes, vent and moan and rant here.

Germ, I have killed several threads in the past few days, feels horrid. blushconfused

Germgirl Tue 11-Nov-14 15:07:45

See? Thread killer! Ignore me ladies. As you were.

Germgirl Mon 10-Nov-14 18:26:11

Hello. Could I please join your thread? Hopefully I won't kill it, I've got previous for that.
My medical history is as follows: 8 yrs ago I had a kidney stone. It was incredibly painful at the time but it passed and that was that. Or so I thought.
Over the next 8 years I had intermittent groin / loin pain, the same pain as the original stone. I had to attend A&E several times during that period but CT scans and x rays couldn't find a stone so I was just given morphine and sent home each time.
The pain continued, sometimes twice a week, sometimes once every three months. I learnt to cope with it, mainly by taking too much tramadol and naproxen.
Then, in June this year I had excruciating pain, I went to A&E and was kept in for a week, had gynae and bowel investigations, all clear. It was found that I had a kidney infection & I had IV antibiotics.
Since then I've been in pretty much constant pain, horrible contracting, stabbing, dragging pain. More x rays and CT scans have shown nothing wrong with my kidneys although the pain is 'classic' kidney stone pain.
So I've been referred to the pain clinic, I have a TENS machine, I'm on 900mg of gabapentin plus Dihydrocodeine, tramadol, diclofenac suppositories, Cyclizine, omeprazole and, added recently, oral morphine.
I am also meant to be attending a pain control course, a 10 week course, one day a week. The bullish part of me want to shout 'I don't need counseling, I need a diagnosis!'
The pain nurses are coming at it from a 'nerve irritation' view, I'm still convinced that there's something 'else' wrong with my kidney, I chevj my urine with dipstrips a few times a week & there's always blood & protein there. Surely that means something?
But, whatever can or can't be found, I seem to now be on the chronic pain path, and that scares me. I've been off work since August, I'm meant to be going back in 2 weeks but I dont know if I can.
Is it possible to join your thread. I know my problem is nowhere near as severe as some people here but I would appreciate a place to vent. Is that possible?

magso Mon 10-Nov-14 17:09:53

Hi mummyonabroomstick (like the name!) and welcome! I think there are others on here with some of the conditions you have to put up with. Its funny how lots of conditions tend to go together -like buses coming in threes. I hope your test results are hopeful. Its great ovarian resrve can be tested for now to help with planning. Most of us understand good and bad days!

mummyonabroomstick Mon 10-Nov-14 16:01:29

Hey all I'm new here so thought (as I am a walking health encyclopedia) I should introduce myself here.

I'm 38 and don't have an biological children of my own although I do have one step son age 3. I have Complex PTSD, oCD, Ehlers Danlos Syndrome and Sjogrens Syndrome. It's not 100% clear which strain of EDS I have yet so am hopefully due to see a genetic counselor soon as if it is the more serious type pregnancy would be risky as my boyfriend na dI are hoping to start a family soon. (It'll be a couple of years or so before we do thst as he is going trough a messy divorce ad child custody battle)

I was worried about my age and getting pregnant especially as my mum went through menopause at 40. I therefore regularly test my urine for any signs of early menopause with an FSH strip. So far I've had negative results. I don't have hot flashes or any other symptoms and I'm as regular as clockwork. I have also just had an AMH (Ant Mullarian Hormone) test done to check my ovarian reserve. It was on Friday, I was so emotional about it all and so nervous about the results I still can't really calm down. I was sobbing in the clinic but they were so nice to me. They said it takes at least 7 days for the results to come back.#

With my illnesses I have good days and bad days: some days I can go for long walk and others all I can do is sty in bed. If anybody doesn't know what my conditions are I'll explain but I won't bore everyone if you know or are familiar with them.

I'll leave it here for now as I'm getting emotional again.

Nice to meet you all guys I look forward to making friends.

murmuration Sat 08-Nov-14 23:24:51

misc, vent and type and away, that's what we're here for.

I think people who live 'normal' lives sometimes just don't get it. They get tired too -- especially physicians, who are notorious for being overworked! One of the reasons it took me so long to ask for help was that in my job it seemed it was just the norm to be tired all the time. But when we got down to details, and I realised other people didn't literally LIE DOWN all weekend and didn't have to make tradeoffs like do I have mushrooms with breakfast or do I not and save energy to sit and play legos on the floor with my daughter instead.

Work being really hard at the moment, including one evening working until about 11pm, and next week is not looking better. While I should have just spent the whole weekend lying down it was a coffee/cake morning fundraiser for my monthly baby/toddler group, and as I missed last month with a UTI, I really wanted to go. But then I ended up just sitting in the corner and not interacting because I was so exhausted. And I'm worried everyone is going to think I'm lazy, etc, as I wasn't helping out. But DD had fun, so I suppose that's something.

magso Fri 07-Nov-14 22:06:57

Misc glad you survived the long awaited clinic appointment and hope you don't pay too highly for attending it (not ideal pacing for you just out of hospital). I wondered about Fodmap too. I know of someone with ME who has done rather well on it - the person who suggested it to me.

My sister (then a very young adult) also had a difficult experience when she was admitted to a phych ward for not being able to stay conscious whilst upright (long before POTS was even heard of). She was supposed to be in remission from Hodgkins, so they thought it was psychological. Managed to get her transferred to cancer unit that knew her, to check her out where she later died from an aggressive recurrence. I think females are often badly treated when illness is not properly investigated. I am so sorry about your sister.
Hope you get some time to recover from your pancreatitis before you have the gall bladder op.

MiscellaneousAssortment Fri 07-Nov-14 01:39:30

It does rather. Yes.

Well if anyone's got any empathy or understanding it's you lovely people on this thread. Sorry for writing swathes at night sometimes x

How's everyone else? flowers

ItIsntJustAPhase Thu 06-Nov-14 12:46:49

Misc, it just seems so crazy the way chronic and multiple health conditions are treated. I'm so so sorry about your sister. It must make your dealings with the health system very scary. Well done.

MiscellaneousAssortment Thu 06-Nov-14 03:16:15

I survived the trip to the hosp and back yay!!!

Must have looked like a right loon though, wobbling and shuffling and dragging self along dripping with sweat and shaking. I was the person people avoid with a wide berth. God i hate being seen like that. They let me lie down to wait which was great, as was the usual loooong wait. I think I actually napped for an hour or so. Ahem!

The consultant is going to wait til gallbladder gone except for a couple of (grim) tests. But she thinks it's probably 3 diff things happening but wants to get gallbladder out of the way to try and simplify the picture.

1. Pancreatitis maybe from gallstone but maybe issue w pancreas too, she'll do a test of some sort

2. That I've had untreated gallstones for the past few years and that's what's causing the intense pain which lays me up every few days / once a week

3. EDS causing absorption issues so after xmas will go onto a diet called FODMAP which is v tough but good results.

Also will do a colonoscopy to see if damage from years of problems (ergh)

She was somewhat wrongfooted by the pancreatitis as she'd read all my notes, and got her diagnosis speech all rehearsed and then had trouble deviating but was useful in the end (I think). I did try and get the receptionist to add it into the file or at least mention it existed prior to the appointment but she insisted that the doctor had everything she needed and I hadn't needed to bring anything extra. Errr, like central records exist between trusts!

Anyway, the consultant couldn't believe no one in all this time had actually asked my symptoms beyond 'stomach problems'. I think she actually didn't believe me but I'm filing it away as proof that I should have more faith in myself.

My (v rubbish) GP refused to listen or refer when I tried to tell about my stomach, several times. The EDS consultant also cut me off when I started to describe what was happening but did refer me direct to this gastro consultant with EDS experience. I wonder if the consultant i saw today would have diagnosed me properly or just ploughed ahead with the EDS connection... She was rather hard to divert even waving the discharge letter firmly from the treatment table. Maybe I'm under estimating her though. I guess it doesn't matter now either way.

It's like if you have a chronic condition you are therefore immune to every other illness in the entire world. You also have no right to medical treatment and will be told off for whining / exaggerating / letting your illness take over your life.

Sorry am venting here alot and I hope it's not trying anyone's patience. I find it all very upsetting as I saw it all happen before to my sister, except she died, undiagnosed, untreated and alone. EDS type 4 was 'all in her head' she was given anxiety medication as she was making herself ill, even after multiple horrific near death incidents which destroyed her body bit by bit, but was never put together or looked at as a whole. They told her the heart and shoulder pain she felt the day before she died was referred pain from tooth ache and not to be so anxious. She died of an anyeurism the day after.

Sorry. Spilling my guts in the middle if the night. Just ignore.

Jumpinginside Wed 05-Nov-14 18:30:21

Hi misc, good to hear you are at least a little better. I hope the appointment went ok.

MiscellaneousAssortment Wed 05-Nov-14 13:21:46

Hello everyone, how goes it?

I'm a bit better but venturing out to go to hosp appointment today. Have no idea how I can do it, as still feeling awful and only a few steps manageable. Going at 2 though.

It's the original appointment for my stomach. Been waiting two years for it. Have got a copy of discharge notes to bring with me.

Hope consultant not going to dismiss the last two years as all about the pancreatitis, as I don't think it is.

Equally hope they won't say I have to have massively invasive tests as am at an all time low.

Bloody hell i wish I wasn't going today.

magso Wed 29-Oct-14 20:28:24

Glad you are home, Misc but sorry you are very unwell. I hope you are being looked after lovingly now you are home. Ds impaction was treated with lots of movicol when he was about 6. Hope your pain is under control and you are able to sleep and start to recover.

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