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

(187 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

Jumpinginside Tue 30-Sep-14 17:31:53

Hi, can I join. Been diagnosed with me/cfs, eds(hypermobility type) and have low ferritin, low vit d and sometimes b12. Generally feel exhausted and in pain.

Feeling bad that my dd has also just been diagnosed with eds and that it's my fault as it's genetic. I don't want her to suffer as I am.

Dd(15) has gone off on a school trip till Friday, and am feeling bad that I feel relieved that she's gone for a few days as this means that I can have a break and rest. Still have ds(13) at home but he's no trouble and does his own thing. Feel like a bad parent for being pleased she's away. I will miss her, but not the effort it takes to manage life when she's here.

I too use crutches. My gp refered me to the OT, who got them for me and a seat for the shower, so didn't need to pay as they were provided on the nhs.

murmuration Tue 30-Sep-14 16:14:03

Oh, fuzz, I hope you feel better! As far as the asymptote goes, I think it's something that is very particular to an individual (so please don't overdo it...). My DH definitely doesn't work that way. But for me, it seems like there is an amount of 'activation energy' (to another analogy), such that doing something when I'm already up and about takes less energy than getting up to do it from rest. I do suspect I could overdo it, but I haven't quite found that limit (other than the evening with the cramps, I suppose). And I also really need long uninterrupted periods of rest, so the two of things combined its better for me to do something on a workday evening rather than on a day off, when it both takes less energy and doesn't lose me my rest.

The glasses are great! I think I can definitively say they are making a difference. Unfortunately what this means at the moment is that every time my 2yo has woken me up in the night, whether she kept me up for 15-30 min or 1-2 hrs, that I have then fallen asleep again before morning. Before the glasses, if she kept me up for more than 30 minutes I would automatically be awake for 3-4 hours, which was usually until morning time. So getting more sleep, but without teething it could be even more...

kinky, but could maybe a physio help diagnose the pain? I don't know much, but if it is joint/bone/muscle related they might be able to tell? Although I got my own crutches and they weren't terribly expensive -- I got the basic grey elbow crutches for about £12. I can't remember where, but they keep sending me adverts in the post (I also bought a shower stool from them). Hmm... it was something like Essential Aids... yes! here:
Essential Aids crutches. I think they may have been on sale when I got them, but even with VAT it's not that bad...

(Although if you buy your own, do be careful -- a midwife tried to take mine back because 'I didn't need them anymore' -- I had to say, hey, those are mine!)

fuzzpig Tue 30-Sep-14 09:19:10

S'ok kinky I'm terrible with names and stuff anyway... Blame the brain fog! grin

I don't work Tuesdays anyway - I never do more than one day at a time which has helped tremendously overall - so now I've got back home from the school run I will be resting all day. Although I'm trying to work out whether I should go to the walk in doctor - not sure if I need ABs but am reluctant to wait for potentially hours just to be told it's a virus (I've really no clue how to tell the difference)

kinkyfuckery Tue 30-Sep-14 09:11:10

Sorry fuzzpig had forgotten the names by the seconds it took to get to the end of the thread. I meant murmur with the glasses.

Try not to worry about what people may or may not think of you at work. Attending training when you've been off sick is important, I think, as it shows you are committed to the role you do and want to keep up to date, even though you may not be well enough to attend work on a daily basis.
Have you managed it in today?

Frances I think the GP would be reluctant to refer me for physio, when we've still not gotten to the bottom of what is causing the pain. I guess I should probably just wait and see what the neurologist says when I finally get seen and hopefully given MRI.
My right arm/hand/wrist is giving me bother now, probably caused by the stick? Urgh it's so difficult to know what to do for the best isn't it?

fuzzpig Tue 30-Sep-14 06:57:04

(By the way kinky it wasn't me with the glasses so I'm not ignoring your question! They do sound intriguing though!)

fuzzpig Tue 30-Sep-14 06:55:36

Murmur I love the asymptote analogy! <maths geek> grin That's interesting, I've always shied away from doing anything when I'm already tired but maybe I need to rethink?

I had all week off, managed a couple of things on the weekend and went back to work yesterday - normally it's just a few hours in the evening but this was a whole day training (followed by the remainder of my shift in the evening). It was great despite feeling coldy. However in the evening it went into my chest and I've been up all night wheezing and coughing up crap sad

So now I'm really pissed off, and worried because if I go off sick again it's too much absence (already hit first 'absence trigger') and it's going to look really dodgy that I made it in for this training (something I was desperate to do, in no way essential to my job) and then go off again.

FrancesNiadova Tue 30-Sep-14 01:54:33

Oh I still can't sleep, pain is so naggy tonight. Thoroughly fed up sad

FrancesNiadova Mon 29-Sep-14 22:20:08

Yes, I had pain each side of my lower spine. Because of the breast cancer, they took me in & x-rayed for spinal bone mets, (scary). What it actually was, was my walking position on the sticks wasn't a good posture & I've worn down discs 4 & 5. Crutches are much more sit up & beg. I don't even use just 1 anymore because I lean to one side.
Could you go to your GP for some physio & get some crutches from there? They're ever so expensive to buy yourself.
Hope you feel better soon thanksbrew

kinkyfuckery Mon 29-Sep-14 21:01:03

Oh I didn't say! I got an appointment through for the nerve conduction studies, just under two weeks from now - but typically we are on holiday then!! I called up and they should be able to get me into the clinic the following weekend (they are working Friday through Monday to shift a backlog as they are under staffed).

They didn't really give me too much information about what it involved. Has anyone here had them done before? Will it just be my legs that are tested?

kinkyfuckery Mon 29-Sep-14 20:58:57

That is interesting thank you Frances I have never used crutches either so wouldn't know the difference.
I get pain in both sides of my back, and both legs/feet. I'm struggling to use the stick in my left hand when needed (possibly because I'm right handed?) What would you think to be the best option for me?

murmur how are you?

And you fuzz? How are things going with the glasses?

FrancesNiadova Mon 29-Sep-14 03:27:01

kinky, I hope that your new walking stick is OK. Just a word of warning though, I ditched my crutches for some pretty walking sticks & even bought a stick that bounced, to save my elbows & shoulders, (my dc used to call it my off-roader!)
Anyway, long story short, 3 years later & lots of back pain I'm back to crutches because they give me a more upright walking position.
So please do be careful. thanks

CFSKate Sun 28-Sep-14 22:21:54
murmuration Wed 24-Sep-14 12:41:35

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.

murmuration Tue 23-Sep-14 09:43:06

I hope you are feeling better kinky sad 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 smile 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. sad 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...

fuzzpig Mon 22-Sep-14 14:34:48

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.

fuzzpig Mon 22-Sep-14 14:32:43

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

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

fuzzpig Mon 22-Sep-14 14:19:10

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 sad 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 sad

kinkyfuckery Mon 22-Sep-14 13:31:45

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

kinkyfuckery Mon 22-Sep-14 13:31:01

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

FrancesNiadova Thu 18-Sep-14 20:11:44

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

murmuration Thu 18-Sep-14 12:56:19

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

FrancesNiadova Thu 18-Sep-14 04:55:36

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

FrancesNiadova Thu 18-Sep-14 04:50:53

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

murmuration Wed 17-Sep-14 10:27:29

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 Wed 17-Sep-14 04:52:05

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

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