CFS/ME/Fibro/spoony support thread 2

[LivingInMidnight]

Old thread here

Hi everyone

Sorry to hear some of you are feeling so rubbish - that's the thing with this isn't it - it's very annoying and frustrating!

murmuration I thought it too fast too - but with their "let's see now it goes" attitude , I thought I would be supported back in .

My aunt (who happens to be an OH nurse) is spitting feathers about it . She says the "phased return" contradicts so many ethical "codes" when treating CFS patients . She has told me to seek legal advice

Is anyone successfully claiming PIP for this illness ?

I had my rejection letter yesterday

I scored 6 points for daily living and 4 points for mobility . So I missed out by two points .

They said my cognitive function is fine - because I could spell a word backwards and recall 3 words . Well yes I could at that moment in time - but that's not how brain fog works

They acknowledged I have a disability and the assessor noted my "behaviours" at the assessment was consistent with struggling with fatigue . BUT I am apparently not poorly enough to be awarded PIP .

I've been on sick leave for 6 months , likely I'll be off longer and it's looking like I can't go back to my normal shift pattern or hours .

Is it worth appealing ? I don't really have any new evidence other than further sick notes and a letter outlining my symptoms from the specialist clinic I've seen .

It's ALWAYS worth appealing

Well
I went to a party last night - after a day of running around at appts for the kids and then cinema - so I am so beyond tired it's ridiculous
My own fault
I shouldn't have danced so much
But I love dancing
Feel like I need a hip replacement this morning!! And I have physio on Tuesday! Argh!
Having a "doing nothing but sitting on the sofa day today"
Sorry have read thread but not retained much - hope everyone is coping as well as they can X

I know next to nothing about PIP, but the one thing I've heard is that it's worth appealing - I have a vague memory of some statistic showing a ridiculously high appeal success rate... oh, just googled, it was 57%! So, yes, appeal definitely worth it.

Oh Dream. Definitely ask for reconsideration, then appeal if needs be. My neurologist and GP want me to apply for PIP, and have said it will 99% be refused first time, but to appeal, as I am definitely "in need"

We've done nothing all weekend. Have barely moved from the sofa other than to make food for the kids and haven't showered in days. I can't believe tomorrow is Monday again

Alice...I know
I shall be off to bed for a nap on Once I have got ds1 his lunch (he has been at football)
Do luckily want a pj day today thank god
Long week ahead...dh not back til Saturday
Physio on Tuesday - ouch
Feel so guilty - all the dc have done all weekend is either watch films or watch their iPad

Just popping in, sorry to have missed a few posts but Easter hols and the chiropractic appts just knocked me out.

I had a look at the CFS scale and I vary from 20-40 but I have realised that when I'm with non-immediate family, I tend to ignore what I can/can't do and try to just 'do'. Not a good thing to do I realise but I have realised how other people treat/view me does affect how I deal and cope with my condition.

Well I've had 4 weeks of Chiro treatments now. It's been very up and down with pain and exhaustion and "cotton wool head" has been a constant feature. Is it helping? Mmmhh yes but no - I don't quite know how to explain.. I have noticed my joints feel looser and I'm finding walking easier due to lack of 'grinding' of the pelvis pubic bone so that's good though I have realised I've gone back about 6mths to pre-yoga exercise (as recommended by my GP) status as that is what sent the pelvic/back pain constantly sky high. But I have noticed that although I've had a 'dip' in this constant pain, it eeking up again and the randomness of the pain is back (whereas pre-treatment the pelvis/back pain took over). So yes I can see I've had some improvement but it's still in that up and down cycle and I half get the impression from the chiropractor that she expected me to be walking in shouting "I'm cured!" whereas I've always gone 'I know Chiro won't cure me but it may help with seeing if the pelvis/back pain is fibro and/or not'. I guess what I'm trying to say is that I don't know whether to keep going with the Chiro (it's not cheap!) - will it provide more 'help' (help not treatment) or if I'm just throwing money away.. it's all a bit confusing

I've never applied for PIP as I feel that I'll be refused. I put on a good 'face' and it's only those close to me who can see the pain and fatigue. I always feel everyone else sees a "normal" person and thinks I'm lazy.

Badders we often do not a lot over a weekend - it's my down time following a busy week with having to be up for school, activities etc.. Tbf, dh prefers the downtime too and most of the time so do the dc (other family members don't get it and that does cause contention on both sides - long saga!). If the kids are happy and do stuff other times then I wouldn't stress

mushroom it takes a while to come to terms with diagnosis and how to cope and if I'm honest, it'll be a up and down cycle of coming to terms, being ok and then going over it all again. Hope you get some meds sorted soon.

Well ds1s football training has been cancelled tomorrow. I always feel guilty but I love it when it's cancelled!!
I've never been to a chiropractor. I'm not finding the physio helpful Tbh but he did recommend a different gel insert which seems to be working better.
However, it's new game of thrones tomorrow so I am very excited about that!It's so important to have stuff to look forward to when you are chronically ill.
Whatever that may be

Hi, very long-time lurker on MN, hope no-one minds... Signed up specifically to join the spoony thread as I really need to be a part of something right now, and I need to speak to/with people who understand. Diagnosis of ME/CFS - over a decade ago, with a recent serious relapse - and essentially signed off doctor's care (3rd opinion if that matters) with antiDs and OTC painkillers while waiting on neuro to 'double-check' that's all it is, due to family history.
Saying 'all it is' feels like a joke though, woke up crying in pain and teary for most of the day. Migraine, vertigo and nausea naturally, took enough pills to take the edge off, but upset that I had to resort to that. Hate the numbness more than the pain... Can anyone else relate to that? I'm in phased return at the moment, so today seems like a massive backwards step, with an early start at work tomorrow
Feeling a bit alone and hopeless, my own fault for over-doing it yesterday. But just needed to vent.
Best wishes to all, I've been reliant on you for a long time, so a massive thank-you to those who are strong enough to post support, advice and experience. You have no idea of the difference you make every day. Can't find a medal emoticon, so have a .

Oooh shiny! Thank you!
I'm sorry you are feeling so low...it's so hard. I find it quite depressing that unless you have a limp or an eye patch or something equally obvious then you can't possibly be ill....sigh.
I tend to just tell people in fine if they ask. It's only very close family that know how bad it can get.

I'm the same with only telling v close family/friends how bad it is. To everyone else I look normal so I can't be ill can I?

I know it's unmumsnetty Ginny but {{{hugs}}} I'm sorry you are feeling so low. The numbness from antidepressants is what stopped me taking them (barr Amitryptilline for sleep) - I found it quite a wierd feeling and said to my GP that they made me feel not part of my family life as I just didn't feel part of everything and dare I say it, depressed. Once I stopped taking them, I felt more with 'it'. I think sometimes you have to decide whether the help the drugs give are worth the side effects.

Oh bugger
I've run out of cocodamol...this is not good

Thanks Daisy, that was kind of you hugs back
I get what you're saying, but I know that I need the sertraline... I wouldn't be here without it. But it is shit when you feel numb mentally. If only I could get my body to follow suit...

Will you be able to last till tomorrow Badders?

Ginny could you reduce the dose slightly? You might find slightly less still helps and reduces the numbness? It is horrible I know, sertraline is one of the ones I didn't get on with.

I will have to..dh away and on my own with the dc
In the plus side - aside from work and physio on Tuesday I have no plans so will try and take it easy this week

Hello annie.
Welcome
Im sorry to hear of your dx...sounds awful.
Lots of us here have similar symptoms so we can empathise
I only work 1.5 hours a day term time only...always counting down to the holidays here!!

Checking in

Welcome to the other newbies

Badders do you have fibro or ME/CFS? I'm just asking as I tend to get painful aches rather than actual pain and I wondered .

I had a panic attack today . First one in my entire life !

I just feel so overwhelmed over the dx , what the future holds , how up and down the symptoms are daily . The fact that there's no cure , how much my life will have to change etc.

I'm going back to my gp tomorrow for some anti anxiety medicine - I think she will be a bit annoyed , as I only just refused them on Friday

Do you think she will think I'm wasting her time? I'm not sure it's worth going .

I have both dream...dx with ME in 97 and fibro in 09
And 2 herniated discs in my back
And I'm peri menopausal!

I think the Dr will be glad you are open to trying meds.
I fought going on amitriptyline for months - it helped me sonmuch! I felt like an idiot

Dream I have fibro with chronic fatigue- that is pain was my main and first symptoms then the fatigue started. Now I seem to cycle between high pain and extreme fatigue with a constant level of either pain or fatigue depending which cycle I'm on - if that makes sense?!

Your GP will have realised you've had chance to think about what's what and be glad you are willing to try the meds.

Hi all and welcome to the newbies, I not even diagnosed yet

After a tough weekend away I'm very sore today, don't want to ask the GP again for cocodamol though, I have been limiting myself to 4 a day but seem to be flying through them.

Got my appt for the rheumatologist through too end of May.

Kitty
I am paying for my dancing in on Saturday!
What an idiot I am! Managed to get more cocodamol though...phew
Physio tomorrow too
I am very tired - I don't sleep well when dh is away

Kitty
I am paying for my dancing in on Saturday!
What an idiot I am! Managed to get more cocodamol though...phew
Physio tomorrow too
I am very tired - I don't sleep well when dh is away

So exhausted. Only did a half-day of work today; came home in the afternoon and slept. I should be able to work from home tomorrow, so will do it lying down and hope I can manage. I hate that just friends visiting have made such an impact :(

And I have a colonoscopy in Thu! So won't be working Thu either, and I've got stuff I need to do on Fri but worried. Last time I had one I was flat in bed for three days, but that was two decades ago. DH tells me not to worry it could be different.

Hello to new people, sorry can't reply too detailed as feel bad at the moment.

Badders -glad you got some more cocodamol

What do others take for pain relief is it just a case of finding what works for you? Naproxen gave me stabby heart pains which I thought were a stomach ulcer flaring up, I still get the stabby pains but not nearly as bad