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/

I have lots to do but have crawled in to bed and am on here. Am utterly exhausted and achy.

Feeling better in that coughing less, breathing better, chest less tight etc. But am just every so exhausted :( Think I have to accept that I was quite ill this time and I totally pushed myself - probably too far and am now paying the energy price.

Court - am on "standby" for tomorrow/Fri.

I want to type more/chat but no energy :(

Hugs, giraffe :(

Hope today was better grockle, did you go back to work?

I am over the chest infection bit I think and am now fully in post viral mode dizzy, horrendous headaches, crushing fatigue etc.

So peed off. I have done really well the last few months and all it takes is a little bug to go back to square one. I just have to hope that overall things have improved enough that it's a much smaller setback. Last time I had this flu-like illness I was off for well over a month. Today was my second day off and I'm really hoping I'll be better (well... better enough) by my next shift on Saturday.

Oh well finally got DD to sleep - in our bed with electric blanket on. She's had a lot of leg pain - could be post viral, could be growing pains. Trying not to panic about the fact that there can be a genetic element to CFS... :(

Off downstairs now to finally chill for a bit - DH out watching football so I get the telly to myself (Revenge, anyone?) Spoons all round. Xx

fuzz - I think outnumbered might start tonight? :)

Ah I never really got into outnumbered! Should try watching it from the beginning really. The children in it are sweet.

Couldn't watch Revenge as 4od didn't work :(

Anyway, please excuse my late night ramblings but I'm wondering if anyone can explain to me in small words why normal colds and bugs are generally much worse in somebody with ME?

I don't really know much about this sort of thing in healthy people let alone those with illnesses like ours. But I want to be able to explain why a cold is never 'just a cold' to us.

Am I right in thinking that when you have a cold, the symptoms are the signs of the body fighting infection (expelling mucous, sweating etc) rather than the virus itself?

And if so is the problem for us that the body, because of a messed up immune system, perceives the germs as a bigger/worse germ than it really is and therefore fights back more giving more symptoms?

An analogy would be good... I hate that people don't get how serious a simple bug can be for us.

Sorry if none of the above makes sense. Really shouldn't be up at this hour but forgot my amitryptiline until really late and worrying myself silly again due to having PMed a work buddy on FB about some stuff she's going to do for me and now think maybe I shouldn't have asked (but would be behind if I didn't ask, so damned either way anxiety wise) argh! Just waiting for the electric blanket to heat up enough to lull me into sleep!

Fuzz hope you got to sleep soon after posting. I have read that the latest theory is that the symptoms of CFS are due to the immune system being in high alert permanently - and producing the fevers, aches and extreme fatigue ( all of which usually forces a body to rest/ collapse in bed whilst the rest of the immune system fights the infection) - and forgetting to return to the normal low alert state once the illness is under control. If that is the case, I suppose a cold or other infection/ illness/injury just reinforces the need for high alert and ramps up the symptoms.
I was awake very late/early too having overlooked my tablet till too late. I heard a piece of music I liked on the car radio but could not remember the latin title so had to get up and look it up. Its still bugging!

Giraffes you sounded very ill last week (and still are). Study/conferences week ends although in some ways invigorating are very tiring for the fit and well. I think one of the unwanted side effects of pred for me is giving me too much energy and then overdoing it big time. Take things as gently as possible. Hope you make a steady recovery. Take care!

Grockle how are doing? Hope your neck and shoulder are recovering. Its best to assume you will need longer to recover, so don't push yourself to get back too soon.

I've been buggered the last few weeks. Made the mistake of attempting to walk to nursery on wednesday, took over an hour to get there that usually is about a 20-25 min walk, rest in between, then over an hour to get back. Thought that by pacing myself and taking my time I might be okay. The pain was bad enough, but I'm always in pain, i can deal with that. Then about 3pm yesterday, my entire body seized up and I couldnt move, felt like I was made of lead. DH had to stay home from work as i couldnt look after the kids :( sixteen hours of sleep last night, and then still stiff today. Similar thing last week from a shopping trip. I think I'm going to have to give in and get a wheelchair :(

Did you get to court, giraffes? Standby isn't helpful, is it? I've been back at work, with a heat pack on the shoulders. It hurts but is ok. Just very tired.

I didn't know there could be a genetic element to CFS I wonder if Lupus is too?

Magso's explanation is the same as Lupus... immune system on high alert & attacks itself, thinking everything is an illness so your body is constantly fighting itself.

Sorry you've been so bad, Beyond. My wheelchair is a godsend. I haven't needed one since October but it means I can do things that I wouldn't otherwise be able to do. Try to look at it as a positive thing - it feels shit but when you are ill, it means you can do ordinary things and is a life saver.

I love Outnumbered.

magso the latest thing I read on CFS was the Epstein Barr thing.

Hugs, beyond :(

WRT the genetic thing - I didn't mean that it's hereditary exactly, more in the sense that often more than one person in a family has it. In my group at the hospital, a few had siblings with it, my colleague's dad and sister both have it. So maybe the susceptibility is genetic. Can you tell I was shit at science.

I never had Epstein Barr - I frequently had high WBC/'mono' but that wasn't followed up by my shit doctor either (the same twat who told me my extreme dizzy spells were just head rushes... No, that would be POTS actually, dickhead... oh and the same one who told me I was only cutting myself for attention) not that I'm bitter, noooo...

Thanks for the responses about the cold thing too BTW :)

The mono thing reminds me. When I was a teen particularly (when the dizziness started, and I was ill/exhausted a lot) I got REALLY blotchy legs. You know where the skin goes all bluey purple and veiny, and if you press the skin it goes white?

I noticed DD's legs were like that while she was ill last week too.

Kate cannot quite follow that link (fuzzy headed and for some reason the link has print overlaid over the paper. I think my explanation is massively over simplified. Immunology is incomprehensable to a mere mortal like me! There are so many theories but the links with immune and autoimmune malfunction feature in all of them it seems. I am interested in the genetic links - especially between EB lymphoma and CFS (Dtsis died from lymphoma - she never really recovered from EB before getting lymphoma).
Sorry you are struggling Beyond. It so frustrating when even the most basic things wear you out.

frugalfuzzpig - I thought mono was EBV?
apparently by the time people get to age 40, 90% or more have been infected with EBV.

ISTR some research that they think EBV is linked to Multiple Sclerosis, but because nearly everybody has been infected by age 40, they looked at children with MS instead, and loads of them had been infected with EBV when compared to the healthy control children.

found it now

"Association Between EBV & MS in Epidemiological Studies

Both early and recent studies have demonstrated that EBV seroprevalence among MS patients is virtually 100%, whereas it is 85–95% among the general population. [7,8] More compelling results came from MS pediatric cohorts. EBV seropositivity is lower in children than in the adult population, thus differences in EBV seroprevalence in MS pediatric cohorts are even more striking than in adults: 80–90% of children with MS have also been infected by EBV. By contrast, only 40–50% of children in the control groups were EBV seropositive."

magso - I can't follow it either, I'm no biologist, but near the end it says

"For many years, researchers have suspected EBV to be involved in CFS. A hallmark of CFS is chronic activation of the immune system, which can be triggered by infections or non-infectious agents......................Our findings in CFS have similarities to recent studies in systemic lupus erythematosus (SLE) as well, in which EBV reactivation is thought to play an important role in disease pathogenesis .........................................our study provides clear evidence that deficiency of EBV-specific immune response is present in CFS. As EBV is known to be controlled by cell-mediated immunity, a diminished memory T- and B-cell response may result in impaired control of EBV. EBV replication is risk factor for development of lymphomas and autoimmune diseases both occurring at enhanced frequencies in CFS patients.................."

fuzz snuggling with electric blanket sounds lovely. Glad to hear your chest infection is better, yes know what you mean though always takes ages to get better from things.

magso did you find the piece of music you were looking for?

beyond Oh it sounds like you have had a rubbish time of it. How would you feel about the wheelchair? Sounds like it might give you nore freedom?

grock glad you don't work on Fridays so can rest after being abck for 2 days. standby is a pain for court but better than having to sit there all day, the apparently phone me with an hours notice - usually only Drs get allowed that.

I think that things have stopped flooring me quite so much since I got tonsils out - I certainly get less fevers now. This is my 3rd weekend in a row of being fairly unwell, still coughing stuff up and feel coldy too. I am a trainee play therapist and I see my clients tomorrow morning so am looking forwards tot hat, then working in afternoon. I usually do ChildLine on a Fri eve but will phone in morning and cancel shift - I don't think I have any more energy to give just now!

Not sure about genetic stuff. I have always got ill with everything since I was a child. I was born prem and always remember being a very sickly child, full of bugs, off school lots etc.

I remember being about 11 and taking weeks and weeks to recover from some virus, just being exhausted all the time.

Actually i have quite a few memories of being ill like that as a child.

I thought mono was EBV?

I'm not sure, I thought the high cell count was just a symptom. I remember being told I had high levels of WBC and mononucleosomethingorothers but it have never been dxd with EBV/glandular fever (despite my parents thinking I had it a few times)

frugalfuzzpig I just googled to see if mono and EBV are the same thing, and it's confusing!

It says here en.wikipedia.org/wiki/Infectious_mononucleosis

Infectious mononucleosis, also known as mono, glandular fever....is an infectious, widespread viral disease....About 90% of cases of infectious mononucleosis are caused by the Epstein–Barr virus....

So I think mono and glandular fever are the same thing, and usually caused by EBV.

giraffesCantMakeResolutions I always got ill a lot in childhood too, they took my tonsils but I don't think it made much difference.

Oh I see! Thanks Kate. Maybe I have had it then.

I was unwell a lot as a child anyway, but it definitely took a different turn when I started secondary. I loved it there but it was tiring (pushy grammar, 1 hour travel each way etc). My POTS symptoms started around then too but thanks to doctors not listening I just thought the dizziness, the hyperventilating etc were because I was unfit. I felt different and inferior, it shaped my life in a negative way. How different would it have been if I'd known what was actually wrong with me?!

I want my tonsils out because I get throat infections 6-8 times a year. GP refused. It I don't bother going to the drs any more but having frequent throat infections doesn't help anything.

Hope you all have a good Friday & a spoon-filled weekend.

I was told I couldn't have a tonsillectomy as a child, because I'd still get throat infections (which I was getting frequently, along with tonsillitis)

I haven't had tonsillitis since I started gargling with diluted corsodyl whenever I get a tickly throat. I'd run out this time so didn't gargle :(

My GP said there is new evidence that suggests that tonsils play some part in our immune system & fighting infections. Which may well be but I have a fucked immune system anyway... I think you're right though - they say infections just move when you don't have tonsils so you get layringitis instead.

Having your tonsils out isnt neccassily a cure anyway, I've had frequent tonsil-less-itis since (basically, the area where my tonsils were gets inflamed)

I'm unsure how i feel about it. It would be great to not put myself into the sort of situation i did this week again, but i still have that little voice at the back of my head saying I'm a drama queen and its not really as bad as im making out. Years of being told there was nothing wrong with me has really done a number on me :(

Off topic, but everytime i see eb virus upthread, my brain is reading it as ebola virus
Seropositive/seroprevelance simply means showing in a blood test btw :)
In adults 100% with ms have the antibodies for eb in their blood, which shows they have beef infected at some point in the past, compared to 85-95% of general population. Then in children, 80-90% with ms have the antibodies, compared to 40-50% general children

last time I had a blood test I was ana positive which indicates autoimmune disease. It's also one of the markers for lupus.

X post with grockle

Oh and BEEN infected, not beef. Its not bse

And frugal, i've mentioned it before, but my gp said about my fainting "dont worry, all women faint"

I think the tonsils are probably important but mine were so badly swollen - they nearly met in middle when not swollen. When swollen I would have sleep apnea because of them. They had huge holes in them from previous scars which would fill up with yuck to form tonsil stones. And I was constantly getting infections and tonsils would be full of pus, would have raging fevers and lethargy for days at a time.

I still get ill and run down but absolutely nothing like on the scale of what I used to before I had my tonsils out. I could not have gone back to uni if I still had them. And I wouldn't have ever booked a holiday as I knew that every 6 weeks or so I would have it. This was especially true if I had been busy - so say I was in the lead up to a busy/exciting day...I would end up with tonsilltis!

Am going to stop eating bread this week - keep getting indigestion from it. Also feel so run down so going to make an effort to get some more fruit in this weekend.