CFS/ME/Fibro/spoony support thread 2

[LivingInMidnight]

Old thread here

Hello been away this weekend ate far too much and drank a little.

Sad thing was where I was was a bit hilly and we did a bit of walking normally I would be racing up the hills but I struggled today I ran 10k last year and would be running over 5K 3 times a week and now ........

sweet and lumpy. It's so hard comparing to past-self.

I had a success this weekend - last night I both cooked a real meal, and then sat at the dinner table to eat it with the family! It sounds a bit pitiful, but I'm really pleased, because I haven't felt well enough to sit at the table after cooking for about 6 months now, and even if I managed to cook, I had to eat lying down on the sofa. Cooking one meal is a far cry from cooking every day like I used to, but it was so lovely to cook and then enjoy the food at the table. I'll try again next weekend.

I'm so glad I found this thread even though I do feel an impostor due to lack of Dx it's nice not to feel like I'm losing the plot.

My DH made a comment last night that really sent my blood pressure up, after I had sat and talked through what had been mentioned on last appointment (DH has RA and he never really seemed to acknowledge anything I have said health wise over the years), he randomly mentioned how it had been on the radio that more and more SAHM where getting themselves diagnosed with Fibro and other 'imaginary illnesses' so that they don't have to work when the Dc get older! I was [shocked] when he said it and wasn't sure if he was telling me I had fabricated it or if he was agreeing that the Rheumy wasn't taking me seriously. I don't know, it may just be that I'm extremely touchy/exhausted ATM.

Out of curiosity has anyone else been to the counselling? because if I have to lay on a couch I don't think I will be able to get back off it!

So went to physio last night basically she said my whole pelvis is unstable. Don't need manipulation or anything like that as it needs strengthened and left alone. Basically over 7 years of pregnancy/breastfeeding have knackered it. I did say why now? She said it could be me starting to run or fibro. So it has me questioning fibro now. But I have pain in other places like my neck and soles of my feet. But she said even if I have fibro I need a lot of physio to correct it. So running was too much for my body my muscles round my pelvis couldn't cope and tired easily and were painful. A thought is around this time I kept getting bad colds etc too triggered fibro

Sorry I'm waivering it's just hard isn't it?

Murmation - well done super mini achievement xx

Re SAHMs and fibro what a load of rubbish most people with fibro are struggling to work because they need to.

sweet I thought the same about what Dh said but don't think he meant it to sound the way I took it. Did the physio check everything when you went to see her or just your pelvis?

Kitty...it was carrying ds2 that did did for my pelvis!
Well
I bit the bullet and went to the dr today about my crushing fatigue
After discussing lots of causes like diabetes and peri she then said
"Of course it could be cfs"
I can't tell you how upset that's made me
I told her I'd been first dx in 97 and she said treatments had got better...(?)
Sigh
I'm so down
And it's TOTM so I have lovely hormonal diahorrea to cope with too
So off for more blood tests on Friday...

Pregnancy n1 started all my pelvis problems and pregnancy n2 made it worse! We chose not to have more children because of how much pain etc I was in. I did see physio's and specialists during and after each pregnancy but little help and my pelvis problems have affected me ever since... I've spoken to others who have had SPD or similar issues during and since pregnancy - we are not alone 🙁

It is hard to have a diagnosis re confirmed.. Did the doctor say what treatments she could offer you that might help?

"Graded exercise"
Which is hilarious as I can barely function arm!!
Exercise!

"Graded exercise"
Which is hilarious as I can barely function arm!!
Exercise!

Any room for a (not so) little one?
Fibro dx'ed 4 years ago, RA dx'ed last September now injecting methotrexate. Hands and ankles worst affected. DD dx'ed with CFS 4 months ago aged 7, her consultant thinks I've probably had it since I was a kid too - I'm inclined to agree. We both also have hms.

Have 'given up' and rented a power chair to help me keep up with the kids, means I can do so much more with them without the flipping fatigue ruling everything. I have a cleaner too.

Hello bishop (fab nn btw!)
I'm 43, married, 2 Dc, dh works away and I work (very!) pt
Got GF at 18
Got ill in 95 with mystery illness
Dx with cfs in 97
Struggled on ever since really to differing degrees
Having a bad stretch atm
Going on away to - wait for it - an activity holiday on Monday
Pray for me!

Activity holiday? Eek!

I know!
Booked it last summer (when I could stay awake for more than 6 hours at a time)
Ugh

What sort of activities?!

I dread to think! Ds2 wants me to do the zipwire.
It'll.probably kill me 😂😱

As well as very painful pelvis at the moment my middle back is very sore tender point on my spine. I could cry.

Anyway finally appt with rheumatologist has arrived tomorrow

Badders - maybe you cantor out the activities and sit in the sun with an ice coffee?

Welcome Bishops

Sounds amazing Badders! I'm desperate to do 'go ape' with my two but.... I fully understand your concerns!!!! Maybe speak to the staff and see what they can suggest/sit with coffee and be the official photographer?! 😄

SweetKitty hope appt goes well tomorrow

Ugh. I'd take my knitting and send DH...

😄

Right R day had arrived! After waiting for well over an hour, she was very quick and direct. Reviewed my blood and said my inflammation markets are slightly elevated so she wanted to do more blood tests and if they come back positive then she wants a MRI of my pelvis and spine. If they are fine it's fibro.

She then examined me said my mobility was fine. Tender points made me yelp.

She said to see my GP about physio for my pelvis.

She then discussed drugs, asked me which was worse pain or fatigue, I said pain just now so she suggested pregabalin (?)

Is the suspicion RA, sweetkitty?
I have seronegative RA which means there aren't any inflammation markers, diagnosis was made via CRP levels and MRI.

Yes it is. CRP is being tested for and if it above average then it will be MRI. I'd quite like a MRI on my pelvis to actually see how bad it is.

All sounds like it's moving now kitty, so at least soon you should have some answers.
I had all my bloods done today and got a dr appt on 9th and physio again on 14th