Spooning into summer - life 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.

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

Tramadol has no effect on me either, Beyond. None at all. Neither does Gabapentin. This is why I stopped taking everything. I didn't know that could be an issue with HMS - I have that.

I was back at work properly today & have whiplash already

I can't find where it was that I read about some painkillers not working. I did manage to find a link for local dental anesthetics not working. here

Will keep searching. Am sure it is a "thing" though.

Hi magso :) Not seen you for a while!

Struggled massively at work today. Really bad chest pain, very breathless and wheezy.

This mentions poor response to painkillers

I am wondering if I have a POTs type thing too. I know a few do. I get so dizzy & breathless sometimes. NOt that I need an additional diagnosis. I have enough. I just want to be healthy again.

Grockle sorry you get this too. The breathlessness I get from the POTS is different to the asthmatic breathlessness. The CFS consultant told me POTS was not a separate entity but went along with CFS/other illness in some people. Actually I think I've always had a bit of dodgy blood pressure control- I used to faint a lot in the mornings on standing or stairs when a teen /young adult ( and I always eat breakfast at that stage in my life). I suspect that the CFS having reduced my ability to do active things very considerably has reduced my muscle strength. The cardiologist said the leg tum and bum muscles are like a secondary mini heart, helping to return blood from the lower body. I am not entirely sure how this works but I sort of follow! Any way, I'm hoping the pilates (even though I only go weekly and join in at the lowest level) will build up my core muscles and thus my 'secondary mini heart'. For me understanding helps me manage - and yes I think my POTS symptoms are better than they were.

Giraffes Oh no! Sounds like you might need time off.

Raggedy how are you? I had a chest infection over the holiday but struggled last week on returning, (I only work 1 regular day a week), was so tired and hazy when I finished work I left my keys at work, and my belongings outside my locker. How are you managing work?

I'm going to take the max dose today, see if that helps at all. Its not having absolutely no effect, as I've had nightmares that have woken me up every night this week, which is apparently a common side effect. So if I'm getting the side effects, I cant be completely devoid of opioid receptors

I've been wary of taking the max dose because my mum (who is the hypermobile one of my parents too) says tramadol made her hallucinate, and I've been home alone with the kids. But DH is off work for the next four days, so will give it a go :)

And I seem to be used to the increased AD dose now, so can't attribute any weird side effects to that.

I'm irrationally irritated by the (possible, not yet confirmed, but quite likely to be it) POTS not being diagnosed when I was in and out of hospital every time I fainted. I know it has only become well known recently, but it still existed, so why did noone think to test. Before my arthritis came on, my hypermobility was way more obvious too, so now I find myself trying to convince people that I used to be really flexible, while getting the look probably just in my head

Well I was sent to a pysch who tried to Dx panic attacks ( just because I am female I suppose) - which I was completely certain was not the case !! So I share your annoyance. Thank goodness for physical proof!Why on earth do Drs (especially those having to deal with faints and keeling over) not know about this!!
Sorry you probably have it too Beyond. However I have been somewhat better since I knew because now I know what to do to help. Hope you find analgesia that works for you!

I've been referred back to the fainting clinic, so hopefully it wont be long til it is confirmed at least. I guess it complicates things that I have depression and anxiety too, and DO have panic attacks. Apparently POTS is commonly misdiagnosed as anxiety. But why cant they tell the difference between a panic attack and fainting, they arent even vaguely alike!

I saw a psych too - because clearly all of this is in my head It was he who suggested fibro & referred me to the rheumatologist. Without my psychiatrist, I wouldn't have been diagnosed with Fibro & Lupus. Not that a diagnosis has helped much but at least I know someone believes it's not depression. In fact, it was not being believed that led to me feeling depressed.

Yes, grockle, it's maddening that it seems some people can't understand being constantly ill would cause depression, rather than the reverse. You'd never suggest to a person depressed due to a physical injury that if they just weren't depressed they'd be able to walk again, or their bones would unbreak or whatever.

Exactly raggedy. And even if the illness/lack of function/ reduced quality of life ect. doesn't lead to low mood, failing to get appropriate medical support (especially belief) will. Thank goodness your Pysch was able to put your GP right Grockle
A fainting clinic sounds a good idea, Beyond.

You're both right.

Today, my ME clinic confirmed that I DO have CFS. So, what my GP put down to depression, is actually Lupus, Fibro & ME. And I was depressed because he wouldn't bloody listen to me. It's only taken four years to get to this point

CFS clinic were positive though so will see what happens when I go back.

Sending spoons to you all.

Bumping for Letty

grockle pleased (ikwim) that they confirmed things ad seemed supportive :) but all bloody frustrating how long it has taken so far and yeah what raggedy said - ofcorse being ill would make you feel low

beyond agree that sonds mad surely they are totally dfferent things?

mago I remember being asked constantly about anxiety when my chest probs were starting and I just had pain!

Anyone ever cracked a rib from coughing? Got told by Dr today he thought I had done this. He checked their wasn't a puncture in lung from a break - but all ok. Sore, swollen and tender in one area. And the muscles between ribs at the back are pulled.

Bones maybe weaker beacause been on so many high dose steroid courses and also on a low dose of daily steroids too.

Been given stronger pain meds as OTC ones weren't cutting it. trying to sleep propped up and use hot water bottle. Dr was very sympathetic and gave me laxatives too so don't strain from being constipated from pain killers! And he showed me how to support injured rib when cough, and said I wasn't to stop coughing and not to only take shallow breaths so infection doesn't build up.

this poster might need some help - directed her over here

Thanks so much Giraffe, that is so kind of you. Hello everyone! I am struggling with a virus that's gone on for 2 years....bit more than that now. I wrote a thread describing how fed up I was. Am sitting here currently wondering if I can cope with all the things I am meant to do today and tomorrow. I hate letting people down.

Welcome Supercosy. I haven't read your thread yet but will look later. That worry about letting people down but knowing you'll struggle is horrible. I do sympathise.

Giraffes that does sound very painful. Sitting up to sleep is so difficult. I have a back support with a slope I can fix to the bed when needed, but I find a big square French style pillow (Ikea sell them) better at stopping the sliding off to one side. Owch at even thinking about it with a broken rib! I seem to have the thin skin and easy bleeding as a side effect of all the oral corticosteroids. Hope your lungs clear quickly. Just recovering from a chest infection myself and the coughing aggravated my already dodgy back.
Supercosy nice to see you found us.

Irony...have had a exhausting day and used too much energy. Will pay for it now. Want to post but am too tired!

Empathy and spoons to you all

Hope you are in less pain, Giraffes and that you can sleep.

I've posted about Karina Hansen before, the girl with ME who is locked up she is in a very very bad way now.

How are you all this weekend?

No sleep last night! None at all. Could maybe fall asleep now but need ot get up at 7 and am too scared will sleep through the alarm so have just made a cuppa and put the lights on. Must be the steroids keeping me up!

I have had a good rest most of the weekend though. And hopefully after work will sleep tonight.

Over weekend have been put on antibiotics and more steroids. As well as pain meds for ribs. And all the usual asthma meds and some extra nebulised meds to help lungs out.

My friend has decided that I am "being daft" to get a B&B room for when I go to my uni course (it is part time, one weekend in 6 is spent full on lectures then the rest is distance learning while I work full time!) but having a weekend as bad as this has made me realise why I need it so much.

I went to the shops yesterday just a short trip to get a few things and was so breathless and exhausted afterwards. I walked round the shop holding on to the trolley for support and having to breathe deeply to get enough air in. Came home and went stright on nebuliser.

On the bright side my cleaner is coming today and I have food in the fridge. So when I get in this evening I plan on eating, then collapsing in my lovely clean and tidy bedroom!

:( not good about the shopping trip and lack of sleep giraffes

B&b on lecture weekends sounds like a sensible plan to me though, i'm doing my degree with the ou and it is such a struggle when i have to get to lectures. I've now applied for disabled student help which means i'll get money to pay for a friend to drive me there, rather than train and walk (which is a right pita). Can you apply for anything similar? They might even pay for the b&b for you! :)

Can't wait til I hear from my pip, as the money I'm hoping to get from that is already earmarked for a cleaner

Hi all. Sorry I haven't been around for ages. Just been trying not to think about being ill!

Things are a bit better lately though. Reducing my hours has had a huge impact. I now do three 4hr shifts a week, spaced out so I never do two days in a row. DH still only got casual work and trying to find something better, but we've agreed it won't be FT (unless it's something really spectacular) as I wouldn't be able to manage.

I've also nearly got to the end of therapy at St Bart's, which has been quite helpful. I'm managing my time and symptoms a lot better and I'm starting to be able to contribute a bit more at home too, with stuff like cooking.

Amazingly I haven't had a relapse for a while now, just the odd crash day which thankfully is over quite quickly. I haven't had any bugs for ages either - most likely because I'm no longer overdoing it at work and therefore not working with germy customers as much and also dosing myself up with vitamins.

Still feels like a long road ahead though, so I'm trying to just concentrate on the present.

Spoons all round xxx