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/

Veeek, yes I have or had POTS as part of my CFS, as I think do several us on here. Its been a lot better since I increased how much I drink (tea/water, especially before rising) increased salt intake, changed to support or shaper tights( or other tight leg clothing). I've probably done other things but they are so part of my life now I have forgotten. Its made a huge difference - not straight away but over time. Looking back I think I may have had a degree of Pots since adolescence - it just got impossible when I got ill.
Murmation, at least I get to Ben10 or Starwars (Ds is 14 - with ASD)!!

Hurrah. My condition's in the news. (Pity it's the daily fail, but they have got all the important points right for a change).

Have linked to it from my FB status. If some of my friends/colleagues read it, they may appreciate it a bit more.

www.dailymail.co.uk/health/article-2577935/The-agonising-toothache-thats-got-teeth-Alison-months-gruelling-needless-root-canal-treatment.html

That sounds excruciating, 2kids. :(

I had a bad night last night - lots of pain, and naproxen and paracetamol couldn't touch it. Work is going to be fun today... But at least I finish at lunchtime. Hats off to those of you who manage to work full time. I know I definitely couldn't do it. I am almost looking forward to my surgery and the 2-4 months off work I will have to have afterwards, because at least I'll get a rest. I find it such a struggle at the moment...

@murmuration I am taking a teaspoon of salt every day and the improvement over 6 months has been quite radical, I can now cook and wash up most days. I am still tired but not CFS tired at all.

@magso yes i'm also sure i've had this problem since childhood and I was checked out for anemia at least twice a year since the age of 13....

I'm glad you folks are aware of this pots business as waiting years for such simple and effective treatment is quite droll! I'd like to shout it off the roof tops if it could restore some well being to someone!

PS has anyone had any investigation into the cause of their pots at all, as i was told to ingest all this salt for about 3 years and was discharged though still symptomatic?

Wow, why salt?

I do remember at one point purposefully upping my salt intake, as I noticed I was barely getting any -- we cook everything from scratch because of DH's food intolerances/allergies, and I tend not to add salt to my food. I was getting quite dizzy a lot, and a med student I knew then casually suggested a diagnosis, and adding salt into cooking did actually help!

But since BLW DD, I cut the salt out because I'd read about how babies need low salt. I wonder if I should work on adding it back in, or at least to the adult portions.

Can they do a blood test or something to see if you are sodium deficient?

The salt goes into your blood and increases blood volume as you keep in more water, just drinking fluid doesn't do the same thing. It's not something you can do without drs advice though of course, you have to keep an eye on your blood pressure, and mine is still really low after 6 months of salt!
As for blood tests, the content of the blood is not the issue, its the amount of blood (due to blood vessels not contracting), hence I was continually tested for anemia, but my bloods were fine, just not enough of it!
A tilt table test is the test for postural orthostatic tachycardia and its really very unpleasant if you test positive, no pain no gain :S

Hello all. I occasionally lurk here but don't often post because I've been lucky enough not to have a bad flare for a while now. I have psoriatic arthritis which is reasonably well controlled by methotrexate. It's annoying, inconvenient, and sometimes painful. But I can live a normal life.

I'm having a flare now though and it's properly interfering with my life. It's hard to explain because its not the direct impacts. My hands are painful and swollen but I don't really need my hands too much for work so that should be ok, right? Except the pain stops me concentrating. It has burst through the level which I can just ignore and get on with my life. Does that make sense?

Anyway,

Oops, posted too soon. Sorry for the moan though, and thanks in advance for your empathy.

Salt is good, murmuration. My friend has POTs and she swears by her high salt diet! She also has the tilt table test and hates it.

Pancakes, sorry that your pain is bad. I'm off work due to the fact that my TN pain is not yet being controlled by my medication. I can't see me going back next week yet as it's so unpredictable. Today I have minimal pain for the first time.

My update is that I had an MRI booked for the 31st. :)

I asked them to put me on the cancellation list and yesterday I got a phonecall to say could I come today. I accepted (even though it would have been a fuss to get the morning sorted as it was an early appointment and I'm an hour away from Walton). But they called back less than 60 seconds later to say sorry, that appt was needed by someone in ICU so they had to cancel it. They did bring my appointment that I had booked forwards though from the 31st to the 21st.

Next Friday seems SO much closer than the end of the month. :) By this rate I should be getting my results letter through the post on the day I should have been having my original appt. :)

The ME Association are trying to raise enough to bring over Professor Ian Lipkin, the Director of the Center for Infection and Immunity, an academic laboratory for microbe hunting in acute and chronic diseases. They still need £965

The fundraising sleepathon for ME is back for its third year

Hurrah.

The same GP who last time questioned why I was concerned about going back to work with my TN pain unmanaged because 'teaching 9 year olds is easy', today....

*talked to me about my pain,
*prescribed the tablets I need,
*told me he'd arranged them on repeat prescription,
*told me I clearly knew what I was doing with regards titrating my dose slowly
*asked me (again) what I did for a living
and signed me off til the Easter holidays, no questions asked.

Yay, 2kids! Sounds like he finally figured things out.

I got a note yesterday that my dysautonomia prescription wasn't on repeat, and to make an appointment. I hope it is just a clerical issue from changing surgeries, as I really need that to live a normal life. Will phone them. I suppose if I must, I will see my GP again -- he seemed fine with the meds! Just annoying, because I'm so strapped for time being exhausted all the time, taking additional time off work for an appointment will be hard.

Murmation, hope it is just a case of a new GP needing to clear the medication before it goes on repeat.
2kids that sounds hopeful. It must be hard for GPs to know everything about every possible condition their patients might present with. It sounds like yours has done some thinking or reading - either way it is a good sign. Hope the MRI sheds light on how best to manage your symptoms.
Flagging a bit this week. Dh is back from his overseas visit which is great but the past few weeks (of single handed parenting/statement reviews/ medical appointments etc)have caught up with me a little. It must be hard for DH who is tired, jetlagged and having to go to work - and I'm the one struggling to wake up and keep ontop of the chores!

Clerical error, phew! I put the brand name on the repeat form, and they have the generic name in their list. All sorted. And I'll be sure to use the generic name next time.

ME/CFS: Cognitive testing causes mental exhaustion lasting days

"After a 3-hour session of cognitive testing of memory and attention, healthy controls took an average of 7 hours to recover, compared with 57 hours – more than two days – for CFS patients."

MRI/MRTA done.

Mostly boring and noisy. Slightly uncomfortable as the TN pain has been breaking through the medication and the vibration from the machine aggravated it. Painful when the nurse tried injecting the dye in the back of my hand and popped the vein, then had to stick it in somewhere else.

Expect to hear results via letter in 2 weeks.

I'm gloomy this morning, wondering when I last woke up not aching and hurting (I can't remember; it's certainly a couple of years ago) and whether I'll ever have a pain-free awakening again. :(

I've done this week with only a couple of painkillers, rather than my usual daily doses, because I've had blood in my urine and stool, and suspect long-term Naproxen use might be the cause... But I do definitely hurt more as a result. :(

Sorry for the moan.

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Hi pancakes

How are you feeling tonight? PA is bloody awful during a flare-up, I know.

I really came on to say I feel so much better now since I was allowed to come off the warfarin. Thanks for all the support I had during the tough times (had a pulmonary embolism last summer). The fatigue was bloody awful.

Flow 2 kids and pancake and everyone else struggling with flair ups/medication problems).
Line runner I would agree that the heavy fatigue is awful and very disabling. Hope you are doing better now.
Has any one tried Adinosine mono phosphate supplements at bed time(the precursor to ATP the energy molecule) to help with muscle pain - and does it help? I cannot find much about it in the literature.

magso, it was amazing - within a week of stopping taking warfarin, I found I wasn't exhausted by 2pm any more. I still go to bed early, but I can work in the afternoons again.

That must be some heavy duty medication.

Glad you are feeling better LineRunner. I'm not on warfarin (I had a lung haemorrhage and pneumonia amongst other things at the start of my fatigue) but curiously 2pm is about the time I have to get my head down- however hard I try to buck up for ds afterschool.

Odd isn't it? My GP thought it might be depression, but it was the meds.