CFS/ME/Fibro/spoony support thread 2

[LivingInMidnight]

Old thread here

Well
I've done 2 loads of washing
The ironing
Been grocery shopping
So that's me done for the day now...
Off for my nap!

Well
I've done 2 loads of washing
The ironing
Been grocery shopping
So that's me done for the day now...
Off for my nap!

Thanks Badders

Well done you deserve that nap I'm just sitting down before making dinner.

I lay on the bed for a bit but had a row with dh so couldn't sleep
Grr
Just brought the last of the washing in and washed the lunch dishes
Am now back in bed!
Such a lovely evening too...sigh

It's freezing cold here today. Was found a friends and the kids kept opening the doors I had goose pimples most of the day. I've got my fleecies on and am under a duvet with a warm dog lying on me, ribs hurting tonight.

I've been on the co codamol today as my period has arrived - which means the diahorrea should stop (yay!)
I'm not planning much other than packing for hols this weekend

Hi, I'm sorry for gate crashing, but I was wondering how you got a cfs diagnosis? I keep going to the gp for cfs type symptoms but all they do is blood tests and then tell me my levels are normal (and to go away really!)

In my case it was a process of elimination - I think it's that way for most tbh
It seems my dr is going to put me/cfs on my notes again - unless my bloods show something that can be treated

Ron Davis from OMF interview

"We have made more progress with one researcher in my lab in the last year than the entire world in the past thirty..............................the biggest breakthrough I think we've seen in this disease is being able to do what's called "metabolomics".
The new technologies allow us to do hundreds simultaneously. So they normally take 10 mls of blood to do one. With this technology you can take a tenth of a milliliter and do 700. And those show a lot of abnormalities.
And one thing they show is that your energy levels are obviously very low. Your whole cycle for generating energy is off."

Quiet in here how is everyone?

Fell off TIO! I obviously don't post enough.

I think the CFS/ME nurse is done with me. Although we have one more appointment in 6 months. Feel like there's not much more to do - I hate that I'm so much less able than I was even just 6 months ago :( I want to be able to do things. I want to be able to go with my daughter to activities and stuff when she gets older - I really worry about that. I just can't do anything on the weekend now, and her one birthday party invite a few months ago took months to recover from. What about when they start coming more frequently? And I miss cooking so much.

Sorry, just a bit maudlin today.

I kind of know how you feel murmation I went for a walk yesterday 8K last year I was running it, this year struggled to walk it and felt terrible afterwards wiped out slept for 2 hours felt drugged.

I keep worrying about how I'm going to manage a really demanding uni course??

I'm in so much pain today meds aren't controlling it, was very close to crying this morning, really had to force myself to get up.

Got GP appt on the 14th hopefully additional bloods willow through by then. Possibly MRI on my pelvis which I kind of want as I want to know what's going on with it why it is so painful. Going to ask GP for physio referral too

Hi, can I join please? (And be cheeky enough to ask for some advice?).

I've had M.E. Since 2010 - I was "diagnosed" by a GP who said "we all get tired". When I pressed the matter I was told I had M.E. We moved in late 2010 and my new GPs have run with it.

Blood tests at six-monthly intervals I am told are normal except for my IgA which is elevated. I'm told this isn't high enough to warrant referral to rheumatology but something to keep an eye on. My reading is over twice normal levels.

I've been seen by a pain clinic but they say I'm on appropriate medication - Propanalol, Naproxen, Codeine or Tramadol (Max dosage), Pregabalin, Duloxetine, Omeprazole.

I'm bedbound all days, and housebound really. I leave the house for medical appointments - so once a week roughly. I have no social life and struggle to read without quickly becoming exhausted, sleep is very disjointed and PEM hits very hard.

I essentially feel dosed up with painkillers and pushed aside. I'm seeing a senior GP at my surgery next week - are there any tests I should be asking for, or medications? I've read as much of the threads on here as I can but brain fog restricts things massively. I also have IBS and migraines.

Family don't get the level of fatigue I suffer, DW and DD are pretty good but it's simply they don't understand and so hard to educate. My DM is spiteful and a long history of EA.

Sorry for so long, and hi

Hi Steve

It's difficult without knowing what they tested for before! I would guess though (and it's just based on my own experience) that the 6 monthly tests are because of the medication you're on (eg to check your kidney function) rather than being diagnostic.

Personally, what I would do is start fresh at your GP appointment, tell them how the original diagnosis was made and all your symptoms (if you have to write them down do) and ask if there is anything else this could be or any other treatment you could have. If you have a good GP they'll be willing to look again.

Newbie here! I was fresh out of uni 5 years ago when I developed chronic pain syndrome and then got told I have hype mobility syndrome too - although my energy levels aren't too bad, it's the pain that gets me - max dosage of pregabalin, ibuprofen gel, diazepam, and a load of anti-emetics for nausea and when I get migraines. I've done inpatient pain management courses, been written off by my old pain clinic and told to train for outdoor swimming races...when I use a mobility scooter or a wheelchair everywhere out of the house and a stick inside! I've moved recently and hoping I'll get referred to physio because I'm constantly hurting myself when I do try even gentle stretches in the house. Even though I've gotten better than my bedbound days, I'm not happy to be written off at 26! Any suggestions about tests/what to ask for? I've had TSH and lyme's tests recently, but I can't believe still that there no answer to my pain, there must be a semi-effective treatment!

Hello to the new people. Sorry, I don't have much knowledge about blood tests and such - they keep doing standard ones over and over (TSH, various irons, inflammation) on me. I was referred to a fatigue clinic two years ago, that the GP said could order more tests, but they just redid the standard ones (as they didn't have access to my records, since it was in another trust) saying it would give them a starting point - then next visit discharged me with a diagnosis of depression. I've been referred back, now, and I'm hoping it will go better this time...

My success for the week: I cooked a meal and sat at the table to eat it again this weekend! And I've eaten breakfast sitting up twice this week - Mon and today. I'm so pleased. And then I feel pitiful for saying I'm pleased that I've been able to sit at the table and eat a meal, as that's something most people do three times a day - and I'm celebrating over three times in a week.

I've been trying to concentrate on what I can do, instead of what I can't, to be more positive. But when I do that, I get the pitiful feeling - how do people deal with that? How do you celebrate your successes when they are so tiny it's objectively ridiculous, and then the celebration of it instead of making you feel better just highlights how little you can do? I feel like there's no way to focus on the positive.

Hi all

Hoping you are all managing some time in the sunshine now its finally arrived…. Can I join you too?

My story (actually very similar to Badders):
Mid 40's, married, 2 DC
GF at 18
Post-viral thingy (GP said ME, specialist said no) mid 1990s for 12-18mths
Fairly well since but prevalent to fatigue/weakness if overdone it

Since recent infection, gone seriously downhill but manifesting as neuro symptoms too (had some of these for a while though), currently off work and basically housebound. Been referred to neuro as GP thinking something underlying after blood tests (inc. inflammation markers) were normal (lymph glands in neck been enlarged for months).

Can ME/CFS present with neuro symptoms as had read it is now considered a neurological disease? Having a lot of the symptoms I had back in the 1990s too (especially the weakness) but with the neuro stuff too, though pain is less muscular more aching in the bones/nerves. Can't help wondering if its a relapse of what I had before…..?

Oh well I guess time will tell.

Hi again
Hello (and sorry to see you here) to the newcomers
My memory is shocking so sorry I can't remember specific questions
Went back to Dr today for good results
As expected all fine - e cost liver function and fsh but I have Gilbert's syndrome which explains the high bilirubin and I am peri menopausal which explains the fsh
So next step is a sleep test then if that's ok I am being referred to cfs services....whatever they are!!!
My cholesterol has gone down 😊 and my old sugars are good
My thyroid is actually nearer over active than under which surprised me!
I'm still very very tired
Holiday wiped me out really
Busy weekend coming up too so trying to conserve what energy I can
Hugs to those that need them x

Midmay...sorry to hear of your troubles
The Dr I saw said that me treatment (!?) Has come on a lot in recent yeArs
I don't know what this means, but assume it relies on meds

Thank you for your welcome Badders. Been reading through the thread in small stages and on one hand it seems a great place to be honest about how we are feeling and on the other upsetting to read how lives have been so affected by these illnesses. I guess it's focussing on the small achievements than the bigger life goals we all might have had.

Completely exhausted/weak/aching today after having an MRI scan yesterday. Managed to get DC off to school and now back in bed. The mind is willing, the body not so....

Hope everyone has a good day.

Where's everyone gone? Hope your all too well to be posting!

Well I've got my official diagnosis from the rheumatologist today, fibromyalgia and Raynauds. My pelvis is also very unstable this is where I'm having about 80% of the pain just now so physio for my pelvis and started on pregabalin 25mg going up to 75mg if I'm ok with it.

Hello everyone, hope I'm ok to post here - around this time last year my dr told me they suspected CFS, but I have not received any follow up treatment. I've had many, many blood tests and all come back as 'normal'. I'm just not sure what to do to make this any easier.
I have days where I can function normally, and days where getting dressed is an achievement. Any injuries/ bruiese etc seem to take ages to heal - I got pulled over by my dog in March and my hip still hurts. Colds and bugs get picked up easily and take ages to shake off. I feel tired all the time, but find it hard to sleep and if I get too exhausted I get the shakes, feel ill and dizzy. I'm lucky in that I can work from home, but can really struggle to concentrate.
I also have anxiety and depression but I'm not sure if these all play off one another.
Sorry for whiney post, but no one really gets it apart from my DP & DM and I try not to tell them too much as do not want to worry them. Any suggestions/ help/ advice/ words would be appreciated.

Hi HuskyPup I know exactly what you mean about not wanting to go on too much to those closest to you but its good you have their support and understanding. Is it worth you going back to your GP for a recheck of your bloods? Did they ever check for vitamin deficiencies as believe there's some overlap with symptoms. This thread (although I've only just joined) seems really supportive and its reassuring to know you aren't alone.

Sweetkitty how do you feel about your diagnosis? Good/bad/indifferent…? I think it definitely helps to have a name to put symptoms too if only to validate it (and that's mostly to others). I was treated by physio for an unstable pelvis too a few years ago (one of the long-term benefits of having DC ) and the exercises really helped with my pain/collapsing legs at the time and did strengthen my core. Pilates or yoga can help too if you were up to that?

Hope everyone else on here doing ok and managing to spend a little time outdoors in the fresh air.

Can anyone help interpret some blood tests for me?

As she is tired & I have 'CFS/ME' the gp saying everything is 'fine' isn't enough for me

Katy replied to you on the other thread