Chronic Fatigue Syndrome/ME/Fibromyalgia - for support

[Katymac]

Hi all,

I've had a combination of these for a while; I have good days & bad days

The World Health Organisation (WHO) had re-designated CFS/ME as a neurological illness and CFSKate has loads of info about new research going on

I thought we needed a fluffy supportive and lovely thread - join in

NO NEGATIVITY (apart from whinging about how crap you feel or how rotten people we encounter can be or how unfair it is that you have it)

Gosh look at all the typos in my last thread

Most of them are old and don't really get it, but it's still slightly insulting they all know I worked from the age of 15 right up until I was sacked because of time off sick two years back so it's not exactly as if I'm known for lazing about!!

On a brighter note, letter from DWP this morning and they've awarded my PIP!!

Hope your all having ok weekends

Oh iccle that's horrible People are so uneducated about invisible illnesses. What have you claimed PIP for? Is it 'just' fibro you are diagnosed with? Or anything else? I'm considering putting in a claim for PIP but am terrified of the assessment. I know my own GP would back me to the hilt but I've heard that doesn't really count for much.

Hi Seven - what type of arthritis do you have? Have you tried cold packs for the pain, or even - I know it sounds weird - heat packs?

I'm ill with a shitty cold since I had my flu jab on Wednesday. Usually I can power through a cold, but this has knocked me for six. Arsehole-ExH wouldn't have the kids though, as he hadn't seen his girlfriend for a few days . I overslept on Friday (yesterday?) and the kids ended up being an hour late for school. I'm so so scared that the school are going to report that I'm not managing. Should I speak to the school about it, or just hope nothing happens?

I don't actually have even a fibro diagnosis, it's currently a chronic pain syndrome that suspected to be fibro but no ones too interested in narrowing it down.

I do also have diabetes but that's only relevant because the fog makes me forget to do my insulin .

It was stressful to apply but I'd recommend it. Even if they turn you down they tell you how many points you score for each part so should you get worse you can decide based on that if you should reapply

Yes, I think the pain clinic have mine listed as "possible fibromyalgia and another chronic pain syndrome". Nothing they can do apparently, I just need to suck it up and accept it
I had to fight to see a neurologist, and am waiting for a repeat MRI (got appointment through this morning!), then will see the Neuro in December and if results are still inconclusive then they will give me a lumbar puncture to check my spinal fluid. They haven't even MRI'd my fucking spine, just my head! I've had to fight every step of the way - except for drugs - which don't fucking do much!!

Sorry for the language.

I did an online PIP pre-assessment thing and with the fibro stuff, and stuff that might be connect, or might be due to self-suspected ASD, I came out at enhanced for both care and mobility. Not sure how likely it is to actually work like that with a real application though? Did you have any help with the forms? Would it make sense for me to contact a welfare rights officer? Even though I am exempt from work on the basis of being a carer anyway?

I had help from scope to fill out my forms (although my woman was a bit useless) I think if you contact them via the website they can give you your closest person.

Can you claim pip and carers at the same time? Might be worth checking before you claim because there's no point claiming if you could end up with less

I know what you mean about fighting every step of the way, it's taken nearly 2 years to see a rheumatologist and even then it only happened because ortho refered me to Nuro and nuro sent me to rheumatology!! Now I'm waiting for the pain clinic to review my meds

Hello new people. Sorry I'm not quite able to remember all the names, as I have a week to catch up on.

Back at work today, and amazingly dealt with tail end of a crisis falling on me right away well. Totally would not have managed dealing with it starting last week had I been there, though. Thanked profusely the woman who dealt with it (the one who is also covering for her boss at the same time). Also nearly burst into tears when I told her I had really needed the time off and that it was hard for me to face that I am ill and can't handle things. Sidestepped a "so, you were away last week?" question from someone who got my autoreply and likely thought it was odd with "yes, although unfortunately I was ill for much of it, too", although I'm sure he's wondering where the heck I was and why. I was ill, too -- caught something early in the week and spent most of the time feeling crap. But way better than feeling crap and also dealing with work.

Several posts I want to reply to, but I don't think I'm up to it at the moment (does anyone else find MN takes a good deal of energy too? I love that we have a support thread, but I sometimes feel like I just need a break, like last week).

Alice I have psoriatic arthritus , I have just started on humiria which has done wonders for the psoriasis side of things but sadly not my joint pain. I haven't tried cold packs only heat packs , will give them ago thanks for the advice. That's interesting about your MRI , I had a head one but not back also. I hope you get answers soon.
Yes you can claim carers and pip. However your carer " duties" could count against your pip claim but only if you were saying you help someone else bathe whilst not being able to bath yourself for example. I claim dla and carers ( my dd has asd)
Iccle could I ask what rate pip you were awarded? I currently receive high rate mob and care dla am very anxious re pip, my car is my lifeline.
Hi murmurtion

Not at all, I got enhanced care and standard mobility

Here's a really great description of mitochondrial disease. It's one of the most sophisticated layman's descriptions that I've seen:
www.mitoresearch.org/treatmentdisease.html

No, It Isn't All in Your Head

I'll post my supplements list in a bit - I basically looked at Dr myhills website and did a bit more googling and came up with a regime.
I've no idea if they are helping or if its me getting better at living with the illness.
That said, I'm really struggling atm. Dh is still away and I feel like I've taken a backward step health wise, glands are really swollen so obviously fighting off some infection so have pared back activity to the bare minimum for the foreseeable future. I've spent more time in bed over the last two weeks than I have for ages, but at least I know I need to just rest rather than push through it.

Seeing a new (to me) GP today....I have a list - is it reasonable?

"I’m busy taking supplements but are my levels still low?
(B12, zinc, folate, D)

Not taking Ads, but thinking about trying the amitriptyline again, but it makes me a bit woosy in the mornings

Fed up with feeling better about 4/5 days after my B12 injection & then it trailing off until I feel awful again by week 8/9

Pain in hands, feet, hips, knees, neck"

Ugh, discovered that while part of my role was covered while I was out, another part wasn't. And now I'm having to pick up the pieces. The person tasked was "too busy" to spend 30 min sending out emails a week ago Monday, so now it will be a couple hours for me to fix. Fair enough, he had barely any warning and wasn't precisely given a choice to agree or not, and I know it's extraordinary circumstances with a very senior person out, but I'm feeling really let down. I may have to give up this part of my role if this can't actually be covered, which seems ridiculous for 30 min over one week a year for something I put near 20hr/week into the rest of the time. Maybe I should go sideways instead of up to ask for cover (like I did for the other part of my role), although I was trusting them to handle it like they said. And that would require explaining to another colleague what is going on and risking them 'not believing' in CFS (like someone told me).

And DD (who has just been transferred to her own room) got in bed with me around 1am and woke me up then kept me up all night with wiggling, so I've only had about an hour of sleep. Today is not looking good :(

Oh dear Mur - not ideal

Well I got a blood test for B12, Vit D, Zinc & Folate - so it only took 2 appointments, 2 sets of blood tests to get what I asked for

I found this depressing

The title is really misleading. They are basically saying at the same time that exercise and CBT is helping people (statistically) and that actually it doesn't help everyone and that there are probably several illnesses that have been put under the same umbrella name....

So really you can take whatever you want from that article.

As a personal experience and having tried to push myself even though I was in pain, that didn't help at all.
I'm not depressed what so ever and have been practicing mediation etc for years. So CBT ( ESP the way it's done over where I am) is unlikely to make any difference.

BUT I also know someone who has lots of counselling when she had ME and couldn't get out of bed and she knows that's what made it for her....

Maybe the issue IS that there are different illnesses under the same name and that they can't be treated all the same!

But manager, family & friends won't read it like that & neither did it come across that way on Radio 2 at lunch time

Head psychiatrist Simon Wessely is on the board of the Science Media Centre so I daresay it is easier for him to get his opinions in the press.

Katymac - I posted a response from America upthread www.thefacultylounge.org/2015/10/no-it-isnt-all-in-your-head.html

"Most significantly, it turns out that some of the PACE results were essentially predetermined to support the effectiveness of CBT and GET. As Tuller learned, the baseline criteria for inclusion in the study actually indicated better health – in terms of fatigue and physical function – than the benchmark for “recovery” at the end. In other words, a patient could be simultaneously sick enough to be included in the PACE study, and healthy enough to be counted among the positive outcomes."

Oh dear (to the telegraph article)! Well I suppose I should be jumping for joy and setting up a GET target, but experience over several (7) years has taught me the hard way that pushing myself - is NOT the way forward. OK now I am far more well than I was in the first few years, and yes I am now able to do more -(but I still cannot work full time) but I think it was failing to believe I had limitations in those early years which kept me at such a low level of health for so long - not the other way around!
I have often wondered if there are several different conditions put in the same (ME) box. And we are all different so perhaps we each have a different disease course or what ever the phrase is.

I do not like that article :(

Although I do agree about the multiple conditions. DH has 'classic' ME; I don't. But the best they can do so far fo me is say "Nothing else wrong, so best guess is ME." I suppose the same thing can manifest differently in different people, but I would be unsurprised to learn that DH and I have different underlying etiologies.

Made it through the day. Had a talk with DD about staying in her room, and if she's really lonely and scared to not wake Mummy up. Let's hope tonight has sleep in store...

That article and the r2 has set back the me cause about 25 years - despite all the recent evidence to the contrary.
My cfs clinic can't even be bothered to offer GET anymore

That's what I thought HeyMacWey

I was diagnosed in 1995 - I wasn't expecting this