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

[Grockle]

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

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.

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?

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?

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

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

Murmur I love the asymptote analogy! :o 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 :(

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.

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

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?

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

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)

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!)

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.

Hello, I sporadically post pn here but not enough to properly be known, but was really hoping for spoonie words of wisdom.

I have EDS type vague but probably three with cross over to four. Also bad Pots and autonomic dysfunction, and chronic fatigue.

I'm also a single working mum with a 4yr old and life is hard. I have multiple carers all waking hours, but also trying to keep my job (part time) as I'm unemployable if I had to do interviews and with all the adjustments. Not exactly able to 'prove myself' all over again.

I have to go for a second OH meeting tomorrow and after the awfulness of the last few months, am scared I won't hold it together. And hysterical crying isn't the professional constructive image I need to get him on side.

Work are very uncomfortable with my illness and I think they thought an OH would tell them to buy a couple of things and then force me / magic me into being well and not demanding such ridiculous favors (other wise known as reasonable adjustments). He didn't and was very helpful at first meeting, but since then my employers have been awful in putting them in place, don't understand them, but won't discuss them, and haven't implemented them alot of them, but are judging me on my performance and finding it wanting.

It's been hell and its clear they want it to fail so everyone can say 'oh dear poor her so sorry, we tried' and then get back into their comfortable world where they don't have to ever meet disabled people.

Basically I feel hounded, isolated, sidelined and harassed. I feel so powerless I keep crying and that makes me look unprofessional and seems to get them wanting to kick me more :(

Sooo, any tips on how to present as 'normal' when even sitting up causes intense pain and dramatic drop in blood pressure... And I desperately need to be calm and nice and together to get him onside and being constructive. He can't solve this but if he agrees with them, it will doom me.

I'm thinking superglue in tear ducts isn't a great idea... :(

Hi!
Miscellaneous it may help to look at your meeting with OH as them helping you - which is what they are there for - to protect your health. They should help your boss to support you. Staff are valuable and getting the best out of them, valuing their contribution is important. We don't all have to work the same way. Ask them how they could help you? I am sorry you feel so hounded. Its horrible. And a lot worse when you are in pain and unwell. Can you have a restful weekend before the OH appointment, to make sure tiredness is not adding to your difficulties. Hope it goes well for you.
Jumping welcome! Not that you want to be here either. I have CFS (and a list of other malfunctions). I wonder if knowing about EDS is better younger - at least you can take steps to protect from added difficulties that might have been missed for you. You cannot help your genes so it really is not your fault - but I know what you mean.
Fuzz I hope your relapse is mild Nice to hear from you. I have also been a bit AWOL but that's due to school holidays. Murmation interesting about the blue blocking glasses. I have a UV blocker in my specs but I don't think that is the same. Frances I hope the physio helps in the long run, and you get some pain relief.
I had a bit of a relapse recently, but am picking up again. Back is troublesome. Ds is back at school so life is a bit easier!

Thanks so much, sorry for just leaping on and asking for help, not exactly softly softly!

Was okish in OH meeting, as he was trying to be helpful though avoiding any of the more tricky issues. I just can't hold myself together if I talk about stuff though. And it's not great when you're trying to be a credible person, not come across as a paranoid idiot.

I'm finding work so hard, I'm running up against company culture big time and although I know that they are not doing themselves any favours legally, they don't appear to know/ care and I need a job, not to win a court case :(

They say stuff like my need for an adjustment to have a more planned existence is not a reasonable adjustment as the industry is fast paced and flexible ... But this translates to them having a team meeting scheduled a month in advance, yet not bothering to say start or end times until the actual morning of the meeting... And then on that morning tell me 1030 and then change it to 10 at about 930am.

They're hiding behind 'company culture' as this amazing thing to revere and transcend minor things like, you know, health and discrimination. And they see me as directly in opposition to it (whatever I say or do), and clearly, not organising the basics of a meeting isn't anything to do with a positive company culture, it's bad management.

I hate it and I want to run away. Except I can't.

Oh and they are organising mediation as they say 'they're bending over backwards' to help and don't understand why I'm saying they are making me ill

Damn sorry pressed send by mistake... So anyway they want to do mediation. Fine. May help as they won't be able to continue the 'spin'... Like, only a few adjustments have been put in place yet they're trying to demote me without even
attempting to help me. And they've interpreted some adjustments such that they make life alot harder for me.

Anyway, I phone the mediator today, for an initial talk, and he's not been briefed at all on the job and now thinks he won't be able to help... Why would the company go pick a mediator who's a sports disciplinary specialist?!?!? And has zilch disability experience... Btw I work in an office, not a rugby field. Fuxkers. It's hard not to see the way they behave as anything other than going through the motions whilst trying to set me up to fail.

I cant lose my job.

Sorry for flooding thread but I can't write a separate one as its all because of my stupid rubbish body and I'm too worried to face possibility of getting ripped apart on other boards.

Welcome jumping! Don't feel bad about something that's genetic -- it's not like you deliberately made her have it. I hope your weekend goes well.

Oh miscellaneous, that all sounds horrid :( Can the mediator perhaps help pick an appropriate mediator? Mediation actually sounds like a pretty good idea, as it may help them realise that everything can't all be their way. Is there any group that can help you? Are you part of a union? Does Citizens Advice Bureau deal with things like this?

I unexpectedly got my neurologist appointment for Sunday! Probably fitting in during a cancellation, as I was almost to the 12-week window in which they're meant to see me. I'm really nervous, as I don't want to mess up this specialist like I messed up the last. I now have the letter from my old Dr and I also made a sheet with my symptoms and how they've either progressed since then, or were fixed by the medication.

Although I'm bit worried about looking overly 'ethusiastic' or fixated on my health or something, like I want to put down every little niggle I get, like all humans have. But I don't know what's relevant -- I think things like urinary hesitancy and retention are, although everytime I've mentioned them to a Dr they seem to completely dismiss it. And maybe everyone just gets more muscle twitches as they age? According to a similar sheet I wrote 9 years ago, I used to get them once a week or so and now I get ~20 a day. If some things are just 'normal', that's fine with me, but I'm afraid by writing them down I'm looking like a hypochondriac.

That's great news you have a hosp appointment - sounds long awaited (aren't they all!).

I'd write down everything & analyse against last time you wrote down stuff. But maybe preface the appointment with saying
"I've had to become a bit of expert patient in order to proactively manage my health. Ive found it helpful to track complex symptoms, and an aid to living as best i can with my conditions"

Also for the person with EDS (sorry cant scroll up to see your name), I think it's great if you've been able to diagnose your dc in childhood. Please don't feel guilty! Most of the damage that has left me severely disabled now, happened in childhood by people pushing my flexibility to the limits, encouraging activities that destabilised joints and skeletal structure, and ignored dislocations and muscle rips. You have the chance to avoid so much of that (though not all I'm sure), and also to teach a healthier way of life than the adrenalin junkie debit-credit lifestyle EDSers get locked into just to survive. In a way you're a trail blazer... our generation are the first really to get diagnosed in adulthood and we're the product of unmanaged upbringings, no medical care and in an era that didn't listen or protect kids when they said they were hurting. Our children will live a very different life. Due to us.

Neurologist appointment went okay. He's referring me for an MRI, although he thinks its unlikely I have MS. I think the letter from the old Dr helped. It is unlikely that I have MS, but I will be relieved to get it ruled out. A bit scared about the MRI! I'm fairly claustrophobic.

I'm a bit annoyed with myself that I didn't think of the old Dr letter sooner. The neurologist also looked up my bloodtests on the computer, and I could see that the last specialist had just done the standard screen like my GP had. Makes me a bit pissed off that they immediately dismissed me as having Depression (when I'm basically happy!) without looking any further, which was the whole point of the GP referring me to them, that they could do more tests. And even at my last appointment I suggested POTS, and the registrar said she'd ask the consultant if he wanted to do a tilt table test, but obviously the answer was no as I was discharged by them, and POTS is what my old Dr had guessed (but couldn't diagnose, because they didn't do a tilt table, just treated it). After reading the letter, the neurologist said, "So, you have POTS." And I had to explain that we weren't sure.

Not sure what I'd do if I don't have MS (as expected), as I've already scuppered my chances at the specialist who would deal with the one thing we do think I have. But anyway, I am happy I will get an MRI and can either get MS off the table, or, I suppose get a diagnosis if it actually is that.

And at some point I should get an appointment with the CFS/ME nurse, who can maybe help me with actually accomplishing things in my life.

Its good to rule things out Murmuration. I've had a couple of head MRIs and found it easier to either shut my eyes or look steadily through the tiny mirror thing that allows you to watch the staff. The noise can be difficult, but more modern machines are quieter. They give you ear protectors which helps. In some ways its a bit of an anti-climax because they don't tell you any results, and of course to the staff its very routine.
I never got a tilt test either. Oddly enough the Pots side of me seems rather better - as is my CFS generally. The CFS consultant had told me that in CFS pots can be part of it. I just have to fix my back now which I think has got unaccustomed to holding me up with 5 years of lots of bed rest!

Hi all, NC old timer here. CFS for two and a half years.

Mobility scooter has been a life saver this last few weeks. School run no longer uses up as many precious Spoons, and visits to secondary schools have been easier.

I had sedation for my MRI. Which was loooooovely. Tiny dose of lorazepam.

Hi again, sorry, i keep going awol. Brain is complete mush at the moment- have no idea how i am going to study. Will have to give it a try and see how it goes i guess.

Misc, i had a feeling you had eds too! Mine is officially only "hms" til the geneticist renames it, but am quite sure i have enough issues all over the place to confirm that!!

Finally saw the OT this week, she has a huge list of bits and bobs to give me to help out. Still no luck with a PA though. Been rereferred to gynae for my second opinion on my (imaginary according to last time) rectocele and have been referred to a hand specialist physio :)

I tried one half of a school run (back only) without my scooter and then couldnt get out of bed for two days. Scooter has been a lifesaver :)

My school run is really ridiculously short but it still helps so so much. 4 X 500yd journey plus the inevitable standing around is tiring.

Just googled, mine is 528 yards from house to school too