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

333 replies

Grockle · 10/04/2014 21:47

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

OP posts:
murmuration · 04/09/2014 22:06

Yeah, I know, kinky :( I start to feel a bit like it's all in my imagination if they can't ever find anything wrong. And I so want to believe that there is nothing wrong. But then I try to live my life and it doesn't work.

Old Dr sent me a draft letter, and will be printing it up on letterhead and everything so I can give it to my GP and neuro. I didn't realise at the time, but he had thought I might have had POTS. I'll have to go read up more about that.

I tried to get the last specialists to test for POTS, but as they released me they obviously decided not to. Maybe this letter will help, as I suspect they just didn't believe me when I said my heart rate reached 200 regularly.

FrancesNiadova · 08/09/2014 10:41

Hi, my 1st post in this new group.
I did a trimalleolar fracture of my ankle 3 1/2 years ago. Since that day I've been in constant pain. On a good day it's like white noise, always there. On bad days I struggle to walk. I use crutches now & have a wheelchair for bad days.
I had my ankle fused in April this year, (I would have had it done sooner, but breast cancer, mastectomy & treatment took priority). The ankle fusion was supposed to be the fix-it. I can now take my air boot off, but when I do my ankle swells so much & is really painful. I haven't had a full night's sleep since I broke it & last night the pain was awful.
I take paracetamol or paracetamol & codeine that I buy over the counter. I was prescribed gabapentin, but it made me feel awful.
Can I ask how you manage your pain & is it worth going back to the Dr? (Oh I am on Citalopram because I'm depressed, apparently!)

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FrancesNiadova · 13/09/2014 09:04

Love the blog CFSKate!

BeyondTheLimitsOfAcceptability · 13/09/2014 18:25

Fallen off my tio for some reason?

Rheum has stopped my methotrexate and started me on leufenomide, in the hope that it does something. She says when my psa is under control, we'll be able to see which problems are caused by my hms.

Still waiting for my OT appointment. Have started buying things that i was waiting for my assessment for. Toilet frame and bed side (as i got stuck in bed the other day) are on their way to me now :)

Thesofaismyfriend · 14/09/2014 21:16

I have been directed to this thread and hope that it can help me. Have recently been diagnosed with probable chronic fatigue by my GP and referred. I have previously been seen by Neurologists for atypical dystonia - they were obviously looking for MS but my MRIs were clear.

I am just hoping to talk to people who understand the tiredness, and in my sad moments, the feeling of it being too hard.

By the way, I am not normally this low - just been a hard day. It is my DD's birthday and I had to spend the afternoon in bed as I couldn't physically carry on.

BeyondTheLimitsOfAcceptability · 14/09/2014 21:20

:( we understand sofa Flowers

How old is your dd?

Thesofaismyfriend · 14/09/2014 21:39

Oh thank you for answering, she is 3 today. I also have a DS who is 5.

I have got my appointment with the Consultant on Tuesday - do you have an tips on what to ask / say?

kinkyfuckery · 15/09/2014 10:45

We understand completely sofa It's difficult for people who haven't experienced it to understand - despite wanting to.

Did your DD have a nice birthday?

Thesofaismyfriend · 15/09/2014 11:33

She did, thank you. They are used to 'Mummy needing a rest' and I managed to be fully present for the first part of the day.

Thesofaismyfriend · 15/09/2014 11:33

She did, thank you. They are used to 'Mummy needing a rest' and I managed to be fully present for the first part of the day.

FrancesNiadova · 17/09/2014 04:52

Can't sleep again because of the pain. I can't remember the last night's sleep I had. Just so fed up with it all.
Sorry to whinge. Sad

murmuration · 17/09/2014 10:27

Sorry to hear that frances. But whinging is what we are here to hear, so go ahead...

Welcome sofa. I'm in a similar situation, although a bit reversed -- after a fatigue specialist couldn't find anything wrong, I just got referred to a neurologist who will go look for MS.

Glad you DD had a good birthday, and that she understands. My DD is 2.5, and has recently picked up saying "I'm tired, I need to rest" when she doesn't want to do something. It makes me feel bad because I know she's getting it from me, but doesn't quite understand.

Somebody I know recently shared this link: Blue light article

I've been having a terrible time sleeping, and I think I may try to find some blue-light blocking goggles to wear in the evening to help me sleep. But I'm having trouble finding them for sale in the UK (I'll need to wear them over my normal glasses).

FrancesNiadova · 18/09/2014 04:50

Glad to hear that your DS's birthday party went well sofa. How did you get on with your consultant?

I had my 1st physiotherapy yesterday, (since the most recent op in April). That was good, in loads of pain now of course! I tried to get an appointment to see the Dr for pain meds/management, but there's no appointments until next week! Confused

FrancesNiadova · 18/09/2014 04:55

Your blue light article was really interesting murmur, thanks for that. I hope you find your goggles, please let me know how you get on/if it makes a difference

murmuration · 18/09/2014 12:56

Well, I've just ordered this item. I'll let you know how it works!

FrancesNiadova · 18/09/2014 20:11

Looks interesting, I hope it works.
I got some pain meds from the GP today, hopefully I'll get some sleep tonight.

kinkyfuckery · 22/09/2014 13:31

How is everyone doing?

Yesterday me and my youngest girl (6) spent some much needed one-on-one time, shopping! at her request. Pedometer on phone registered 5.5 miles and today I am dying because of it.
I used to be able to do stuff like that every day and be totally fine - as can most people. I'm finding my mobility going downhill, fast, and it's scaring me Sad

kinkyfuckery · 22/09/2014 13:31

And I just opened a parcel from the postie. It's the 'just incase' folding walking stick I ordered last week

fuzzpig · 22/09/2014 14:19

Hey everyone.

I'm glad this thread is still around.

I'm sorry I have not been around chatting and supporting anyone for a long time. I kept trying, but the social anxiety gets in the way and I find it hard to come back when I've been away. I manage with other threads, but I guess it's the subject matter that makes this kind of thing exhausting. I am a mess psychologically and even my MNing, my one place of support, is affected now FFS. But I'm hoping to keep up with various support threads now. I need to. Sorry Thanks

So today I have my first solely ME related absence for at least 7 months :( I've had a couple of days here and there with viruses but this is the first time I have had to say "I am having a relapse" for a long time and I'm SCARED.

This is the first time it's happened since DH started his job and I have not a fecking clue how this is going to work. School run is twice as long because DD is at a different school, she has packed lunches too, so that's another few spoons used up every day.

I had gone so long without a proper relapse that I'd started to feel like it'd all been a dream TBH. I actually felt like I was no longer disabled IYSWIM. Now I feel like a fool.

I can't even talk to people at work about it anymore, I always feel really embarrassed now even though I know I shouldn't. I tell a couple of my (same level) colleagues/friends when I'm feeling bad but even though they've been telling me to ask to go home for the last couple of weeks, I just can't do it. It's humiliating and I feel like they'll be all "oh FFS not this again". And I feel bad for complaining about what I'm going through when our manager has been away for months having cancer treatment.

I don't think I can do all this again :(

fuzzpig · 22/09/2014 14:32

Oh FFS just wrote another post then lost it.

Kinky I hope you get on well with your stick if you need to use it. I've had one on my wishlist for a while but get a lot of pain in my hands during flare ups so not sure if it's the right thing for me.

I'm now reconsidering these:

IMAK Arthritis Gloves, Medium, 1 ea www.amazon.co.uk/dp/B0014WXCYY/ref=cm_sw_r_awd_vqciub06KZ7FW

As I hope they might help the pain. But it seems they've now increased in price

fuzzpig · 22/09/2014 14:34

Oh and also I'd written well done for going shopping with DD. Shopping is surprisingly exhausting isn't it? It's deceptively strenuous and I don't tend to realise until after. Hope you feel better soon.

murmuration · 23/09/2014 09:43

I hope you are feeling better kinky :( I hate not being able to move as I used to. At the moment I'm doing pretty well, but I'm planning some things at work that will require quick walks back and forth across town everyday, and keep putting it off. But I thought yesterday I had best do this now, when it's actually possible, instead of waiting and finding out I can't do it at all. (And yet, I'm thinking, not today! How about I start next week...)

Hi fuzz! Welcome back! I've name changed yet again, but we've met before :) I understand about the social anxiety. I have to occasionally take break from MN otherwise it just ups my anxiety level overall. DH doesn't understand, as for him the internet is a static thing you can look at from the outside. For me, it's like being in a room full of chattering people. And that just drains me.

Sorry to hear about your relapse. :( Although does it help to know that your story gives me some hope that there can be good bits, too? I'm desperately trying to figure out how I can manage to get things done. I've come up with a few more strategies -- for example, I've found I seem to have what I can an 'asymptote' effect: I'm so tired after a day of work, that a little bit more doesn't really seem to have any further knock-on effects. So I am trying to do things in the evenings after work that I used to do on the weekend, and then end up not getting rest. However, I do think there might be a limit to this. Last week I ended up with quite bad stomach cramps one evening, and I think it was because I did too much that day.

I have a terrible sneaking suspicion that my 'stomach bug' of a few weeks ago was in fact an ME thing instead. It hit right at the typical time: Wednesday afternoon, after a second weekend of activity, which was a massive weekend (we went away). Although I hope not. I guess I'll just have to see if it happens again. It would be very scary if it was ME, as I was quite literally unable to move. Any movements would cause massive stomach cramps and I'd end up collapsing. DH even had to move my feet for me to get them under the covers.

And oh, I also get fuzz, that guilt feeling over other people who have 'real' diseases. I feel like why should I complain, I'm not actually dying or anything...

murmuration · 24/09/2014 12:41

My blue-light blocking glasses came yesterday. I wore them for 2 hours before bed. I guess I can't really tell anything from just one day, but last night was the first in ages that I haven't woken up enough to wee in the middle of the night, so perhaps I slept better. Teething 2yo doesn't make it easy to tell...

They were a bit uncomfortable, but if they help my sleep, I'd say it was worth it. Fine for seeing inside in the evening, although colours a little distorted (e.g., no blue!). I had a bit of trouble with my crafting in the evening, as I had to have DH identify two colours of purple for me that looked identical through the glasses. But overall good impression, and I'll keep trying them.

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