CFS/ME/Fibro/spoony support thread 2

[LivingInMidnight]

Old thread here

Currently in bed and am staying here until school run time. Very cold and my pelvis is in agony I could cry.

Sorry to jump in but could someone tell me how you get diagnosed with fibro?
I already see a rheumatologist due to having Lupus.
Thanks

Coco....I got sent to rheumatologist after a blood test came back positive for lupus (sorry I can't remember what it was)
She said that they don't dx lupus on goods alone and I didn't have enough other symptoms so dx with fibro.
No meds, no treatment plan, nothing.
That was 4 years ago.

Kitty...I was outside in the sleet and wind all lunchtime at school....brrr.
Ds2 and I will be snuggling up on the sofa after the school run

Badders that's awful Lupus can be diagnosed on bloods. Mine is diagnosed on symptons!
I'm on meds for Lupus, but have figured out my jaw and face pain is TMJ and read it can be a symptom of fibro, I have a few others that fit too. I'll mention it at my next appointment, but my rheumy is a bit of a tosser tbh.

Oooh TMJ is nasty
Tbh I have no idea if I have lupus but the Drs attitude was "you aren't I'll enough for me to care, come back when you are"

TMJ is horrible... I have that .. I just got told to keep on with the painkillers I'm on.. 🙁

A friend of mine has Lupus and her symptoms fit in very well with mine, a few variations but very similar. She was diagnosed by blood test. I can't remember what treatments she has.

I'm feeling really peeved... ds2 is leaving primary this year and the parents are supposedly arranging a "prom". I've already been roped in to make a cake. Today there was a meeting at a local cafe so I dragged myself there.. only myself and ds2 friend's mum turned up ... She also suffers with health issues and we both could have done with staying home, all I've wanted to do today was cry with exhaustion but I kept going cause of this meeting..... I'm just 😡

There's no single blood test for lupus, but most people with lupus have a positive ANA. However, ANA is also positive in people with other illnesses and healthy people. So a positive ANA is not enough to diagnose lupus. You have to score a certain number of points on the criteria for a diagnosis. ANA is only one.

Coco you need to get your rheumatologist to diagnose Fibro, but some drs won't. There's a lot of overlap between lupus and fibro. If they won't diagnose it you could ask if you can add a tricyclic. You can have TMJ without fibro though. Sometimes it's just another symptom of lupus. You'd be better off getting the TMJ treated itself. The medication is similar but there's loads of other stuff they can do too. Your dentist should be able to refer you somewhere. If it's really painful it's better to get it sorted quickly. Do you have trouble with stress or anxiety?

Yes I am quite stressed atm.
Im only out of a big flare as well so haven't been feeling great.
One time at the rheumy he got up and squeezed the back of my neck, I presumed that the time that was for fibro.
Unfortunately a lot of things can be attributed to Lupus, I need to get new pain meds sorted for times like this. A rheumatology podatrist told me to get checked for rheumatoid arthritis as well.
Thanks for the replies

Ahh the stress will affect the TMJ pain. You've got loads going on so totally understandable!

Must have been an ANA then
The gp seemed quite concerned hence referral to rheumatologist
I'm unsure tbh...I certainly fit the fibro profile

Evening all just off to bed have had a baddy been quite tearful today. In so much pain and had to go back to bed for 2 hours this afternoon. I don't work just now volunteer 1 1/2 days a week though in my dream job that I've just been accepted to uni for. How am I ever going to manage a demanding uni course?

Sorry if I'm bringing the thread down with my me me me posts but you lot are the only ones I can talk to the only ones who understand. My DH is trying to be supportive but in the past had told me he thinks it's all in my head. Oh and I should see a doctor if I'm in that much pain and I shouldn't be taking so many painkillers as they aren't doing me any good. My close friends think it's my diet and all I need is to start eating meat again. Don't have any family support either just DH and the 4 DC.

Then I have my health anxiety in the back of my mind thinking what if it isn't fibro? What if it's cancer?

Sorry

Kitty...I have a saying...
"At 4am ANYTHING seems possible!"
Even more so when you are awake due to pain and discomfort. I have convinced myself I have many awful things over the years....
Dh is quite understanding. The dc don't know. Well, they know I have bad back!
My own family aren't really interested - I don't tell them much due to that.
I have friends who don't know.
Dunno. I just hate it defining me...but of course, it does

I really don't know what to do... Had a meeting at work today and it sounds like my job is going to get more demanding, with much more pressure to do things quickly among other things. I can't do anything quickly! Seriously, I am ridiculously slow. I really struggle not to feel totally useless at the best of times, particularly as I work with loads of young graduates who seem to have endless energy and enthusiasm and not much tolerance for people who don't. Feeling quite upset about it all. Had a terrible experience last time I went to occupational health in 2009ish, so not sure if I should ask to be referred to occupational health again or if it'll be really stressful again (had to fight to get a factual report last time and the union had to get involved). Feeling despondent .

Can I just ask people with a young family, how do you cope with the chronic tiredness? I am so desperately tired that any 'free' time I get, is spent sleeping. And even then any benefit is short lived. Every day I feel trapped between these four walls and the school run. Oh and bed. I am sick of it.

I feel it more when I have something extra to do. Like I have a wedding to attend and nothing to wear, so I need to hit the shops. However I have tried to purchase online and found it limiting, including having to return items and lose out on delivery costs even though purchases are refunded. My only option is going to be to wear something that I don't like or feel special in and I am sick of it.

My husband closely guards his down-time and we have exactly the same amount o time for rest. However he can use his for a hobby and I have to sleep in mine, so I can't even get the basic extra stuff done (like the wedding), much less pursue a hobby.

I asked if the pre-school can increase my 2 year old's hours a bit but they said no, he's too young as they've started him before 3 years old. I don't feel it's fair to him to introduce another carer and besides, I don't know of anyone who would just a little bit here and there.

How does/did everyone else cope with the younger years? I feel guilty for feeling so trapped and fed up, and wishing their lives away.

Trapped I'm in the same position as you!

I have pre school age twins.

I have ME and it robs me of any motivation to do anything other than sleep .

I drop my boys at pre school each morning then I spend most of the day in bed . It is rubbish .

When they get back from pre school , if I'm really ill , I get out the iPads

I feel guilty that I don't have the energy to play with them . Really guilty .

DH helps out and at weekends I go for naps - but I noticed lately the boys are feeling my lack of presence .

I have no answers unfortunately .

Some days I feel like death would be the best option (I wouldn't do anything drastic , but this is just mind numbingly shit!)

It's so frustrating isn't it?

A teacher at school today noticed I was having trouble with the stairs today, said I looked like an old man (context it was his 50th so I was saying did he feel any older?) first time anyone's noticed.

I've ran out of cocodamol as well, I didn't want to ask the GP for another repeat prescription in case she thinks I'm a pill popping addict. The most I've taken in a day is 4. I'll get another prescription on Monday and buy some at the chemist although they won't be as strong.

Gentle unmumsnetty hugs for everyone suffering x

So hard with young children isn't it? it does get easier but that isn't much help while they are small. I learned to have set quiet times so we'd do something and then we would have tv or do some drawing (never read a book at quiet time when sitting somewhere comfy, unless I was feeling awake, as it sent me to sleep! Homework reading was done at the table!) and so on. It didn't stop the falling asleep once I could stop but it helped me keep going for the kids (and still does but being older now, mine do occupy themselves).

Trapped would a 'mother's help' or even paying a teenager to babysit (aka take them to the park or play in the garden) help? or maybe a cleaner to take the housework pressure off you a little (if you can afford it)?

Sweetkitty if you need the medication then please take it. I've spoke to my GP about this (especially since another GP wanted me to cut down/come off the meds) and she said that for Fibro and CFS there is limited help available and if you find a combination of medication that helps reduce some of the symptoms and helps you sleep then you should take it. You can always cut down if you start to feel better and you are not taking them because you are addicted but because you need help to suppress pain or to help you sleep.

Just checking in to new thread - too dozy to do more than skim read, but hello to everyone who's joined recently - i'm an unwilling member of the fibro club. Not having a great time.

Young kids is so hard! I feel terribly guilty all the time. Like you, trapped, I spend all my 'free' time sleeping. Actually, I feel guilty in that I've been taking more than my fair share of free time to go sleep, lately, as I just am not coping. My DH feels like you, striker - he takes DD to nursery and sleeps and turns on the TV or iPad otherwise, with an occasionally trip to playground or baking or arts and craft if he's not feeling too ill. And I come home from work and do nearly nothing with DD. I hate that she has a number of 'lying down games' that she entices me to play with :( I really hate that she sees me fall down if I try to do too much (which sometimes is just walk across a room) :( :(

I am so worried about when she gets a bit older and goes to school and starts wanting to do activities and parties and such on the weekends. At the moment she's got one little friend who invites her to his Bday party, and each year that's been a terrible time of the year for me as there is the present getting and the party, and when you combine that with the once-monthly mums group I go to and the fact that I can only manage to do an activity every other weekend means that it is a real struggle to do stuff, particularly as DD's birthday is shortly thereafter and so there is getting her a present and baking a cake (and simply baking a cake counts as an 'activity' for me). It's just too much to fit into the available weeks and once again this year I totally overdid it and ended up crawling around the house for three days in a row (luckily had thought ahead and booked that Mon off work). My father keeps asking if we're having a birthday party for my daughter and doing that is so beyond my abilities. But as she gets older she'll probably want one (especially as he keeps asking in her hearing). And have more friends, and do sporting events and other things. I have no idea how I will cope.

Hi everyone, happy Bank Holiday weekend to you all!
I'm a fibro-&-other-stuff girl too, and can identify with so much of the pps above - my heart goes out to you, I know how you feel & feel it too.
Does anyone else get awfully constipated, with the combination of cocodamol & the sluggish digestion that Fibro brings? I had 10 generous portions of good f&v and lots of wholegrain one day last week & it didn't do the trick! (Sorry for TMI & any images this brings) Lactose is pretty much useless so I'd be grateful for any recommendations you have - I drink lots of water & try to walk / Potter 4,000 steps a day.
Thank you.

Gentle hugs xx

• Lactulose

Yes I'm with you on the constipation front and it caused my piles to return. I've always found that dried apricots give me the runs so have been eating them. Not too bad now.

Slept for 3 hours yesterday morning. Thought I'll just lie down for half an hour, 3 hours later I woke up.

Feel like my whole body aches today too

Prune juice! tastes foul but a small glass every morning works wonders
I have the opposite issue today....I'm on my period and have the runs
Thank god dh back today after 10 days away!
Happy bank hol everyone X

Oxford Tues 10th May

London 3rd June