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Chronic Fatigue Syndrome/ME/Fibromyalgia - for support

1000 replies

Katymac · 17/09/2015 11:27

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 Grin

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)

OP posts:
sweetkitty · 07/04/2016 17:32

Blood tests back today all satisfactory.

In one way this is good news but in others it's pointing more towards fibro isn't it?

My friends think once I get the correct meds I will be fine, if only. I've even had the now you can eat meat and drink normal milk again!!

LivingInMidnight · 07/04/2016 19:16

sweet depends what they tested for. Don't let a GP diagnose you either. I've seen the difference in how seriously other HCPs treat it depending on who diagnosed you. And they will ask! Push for referral.

moose if they don't diagnose her and treat her properly do you think you could push her to ask the doctor to refer her to a pain clinic? Assuming there's one near you. Your step dad just might not get it... Most people who haven't experienced chronic pain can't imagine it.

moosemama · 07/04/2016 19:51

There is a pain clinic in our healthcare trust, as the physio I went to privately for my Complex Regional Pain worked there. I have asked Mum multiple times to ask for a referral there, but they just don't listen to her. I think they have her down as a malingering pensioner. The only time they took her seriously was when she had the tia's, but even then she was let down. It happened out shopping with my sister and I, paramedics were called, but took over 40 minutes to arrive. Then they couldn't get in through the emergency service gate for some reason, so took her back to the ambulance - so by then it was an hour since the collapse, where they just sat her in the back and did the basic checks, before listening to her typically saying 'I'm fine' - when she clearly wasn't and letting her go home! Turned out she'd had two tia's in quick succession, several witnesses, including a trainee doctor, told them she had lost consciousness, her face dropped, her speech slurred and she couldn't remember where she was, but for some unknown reason they saw fit to let her go home. Angry

The problem was, my step dad had arrived at the same time as the ambulance, so he went with her, instead of my sister who was actually with her when it happened (I was inside a shop, they waited outside because Mum wanted a sit down). He obviously had no idea how bad the collapse was, so he didn't fight to get them to take her in.

It's no wonder she doesn't trust the NHS. She says she's given up fighting for help, as no-one listens and if, by some rare miracle, one person does, she's then referred on to see yet another nay-sayer in the more specialist departments before being discharged. Between that and all the administrative and procedural failures, she has no reason to trust anyone to actually take care of her. Hmm

I think you're absolutely right about my step dad not understanding. He's never had any pain, other than when he snapped his achilles tendon years ago and has no chronic health issues at all.

LivingInMidnight · 07/04/2016 20:37

She's basically fallen through the cracks for years then! Blimey. Fingers crossed she's not seronegative next time they test her. If they diagnose the EDS too hopefully they'll take that into account with the pain meds. She can't go on like this!

sweetkitty · 07/04/2016 21:34

I'm waiting on a date for the referral to a rheumatologist GPthought she would do full bloods to start off

sweetkitty · 09/04/2016 22:27

Where is everyone are you all ok?

moosemama · 10/04/2016 00:55

I am around - struggling with stomach problems and kidney pain (another side effect from the blooming omeprazole that I'd forgotten about) and have ds1's 14 birthday tomorrow. Am only up because dh and I have literally just finished his birthday cake, card (dh always draws one for him) and wrapping presents. I'm just about to slope off to bed now, because it's bound to be an early start, as ds1 is beyond excited about the new laptop he's having for his birthday, as he and dh designed it and had it built to order.

I'm slightly concerned that my echo appointment has come through already, as the cardiologist said it would be about 6 weeks, but it's in just over two, which makes me wonder if he's had a closer look at my ecg and wants to get it done sooner.

Had very nasty episodes in the middle of the night both last night and the night before and am so ridiculously exhausted as a result. Unfortunately dh is also exhausted, because I woke and kept him awake both times and he's worked 12 days straight until today, including 4am starts and late nights. We're a right pair between us at the moment - not great with 2 dcs' birthdays a week apart to contend with.

I could do with all three dcs going back to school this week, but ds1 has another week and a day at home.

Will try and pop in tomorrow, as once ds is ensconced on his new laptop and the game he's got to go with it, I doubt we'll see much of him at all! Grin

AliceInUnderpants · 10/04/2016 09:46

I re-posted an article from The Mighty last night, about mourning the idea you had for life, when you are diagnosed with a chronic illness. This specific article was written by a poster with EDS. I woke up to this comment:

Look on the bright side, better chronic than terminal, can claim more benefits for longer lol x

I'm fucking raging. My friends have been going to town on her though.

LivingInMidnight · 10/04/2016 09:55

Angry!!!!

moosemama · 10/04/2016 15:21

Shock [anger]

Glad your friends gave her what for!

Badders123 · 10/04/2016 15:37

Moose...glad the appt is nearing for you. I am having stomach issues too (chronic nausea :() but trying to carry on as normal.
Back to work tomorrow! :(
I'm so angry on your behalf...what a vile ignorant thing to post.
Perhaps you should fight fire with fire?

Chronic Fatigue Syndrome/ME/Fibromyalgia - for support
sweetkitty · 10/04/2016 19:34

Aliceinunderpants - 😡😡😡😡 people are idiots

Moosemama - poor you hope you have a rest today xxx

Cagliostro · 10/04/2016 19:52

WTAF Alice! Shock Angry Glad your friends are giving the poster what for. Twat of the highest order.

Blush Blush I've got no hope of keeping up with this thread, so I'm just hanging out in the hope that when we get to a new thread I can keep up properly and be more supportive.

Hopefully will see my manager tomorrow and arrange a meeting. I know for sure I'm not going back to that job now, and they haven't found me a new position within the (huge) council, I just want closure now so I can move on!

HyacinthBouquetNo1 · 11/04/2016 15:59

Just an update: phew I have had a very hectic day. Got up early, somehow ended up missing a dose of Gabapentin (will pay for that later!)

Did a quick online shop. I had booked a doctor appointment for a couple of weeks time but something made me check the online system and lo and behold there was a cancellation for this morning so went to that. It was about my awful episode of dizziness and everything was moving about when i woke up one morning a few weeks ago, ever since I have had a bad headache, dizzy and episodes of blurry vision. I am very unsteady and cannot walk in a straight line, I was worried I might have had some kind of stroke. anyway Dr thinks it is an inner ear problem, I think I have had it before some years ago and there is mention of BPV in my notes. I have some tablets to take and give it 4 weeks, if no better or something different happens, I have to go back. MORE tablets to take! I am on loads already.

I did my first shift of voluntary work at the charity shop today, I managed ok to say I am still quite dizzy. It was very tiring but I did enjoy it and the time went really fast.

I am not doing anything else today but resting and having a quick meal for tea. My legs are killing me.

Hope everyone is managing ok

LivingInMidnight · 11/04/2016 16:19

Well done for getting through the first day! Flowers

HyacinthBouquetNo1 · 11/04/2016 16:22

Thank you, Living, just hope I am not too worn out tomorrow!

LivingInMidnight · 11/04/2016 16:35

Fingers crossed! It does throw your pacing when you do something new, sometimes I feel like I'm forever calculating what I can do!

sweetkitty · 11/04/2016 19:53

Had a day out with the DC today it was bitterly cold so didn't really enjoy it. Came home wiped out wrapped myself in duvet and fell asleep, then I had to walk dogs, make dinner and take some of the DC to clubs. I'm exhausted now and have a sore head.

Having problems with my DH just now. First he told me its all in my head then he said so this could be you forever? If it weren't I'd kill myself!!! He's since apologised for that but he still said it. He got on at me today for laying in until 8! As he was up at 6.30am he thinks if I got up then I could get far more done.

On top of that the cocodamol has made me constipated which has given me piles somewhere else to hurt

MalinHebrides · 11/04/2016 23:33

Sounds like your DH needs to read the spoon theory, sweetkitty Hmm! I guess it's hard for people to understand what this feels like, but still...
Hope you have a less exhausting day tomorrow. Flowers

murmuration · 12/04/2016 08:43

Oh, sweetkitty, sorry to hear about your problems with your DH. I don't have much advice, there, maybe giving him to stuff to read? Spoon theory is good. There are probably some specific fibro things that could help, but I'm not very familiar with stuff. There is also the issue of he may be having fears/doubts/etc that he needs to speak to someone about - not you! I think I may have mentioned earlier (much earlier) about the bulls-eye theory of support. The sick person (you) is at the centre of the bulls-eye, the people closest to you (DH) are the next ring, and so on. Everyone needs to support inwards and go for help for themselves outwards. DH won't be able to support you if he can't talk about his fears, but he can't do it to you, as it will seem to both of you like he is blaming you.

Even my DH - who should understand, given he actually has diagnosed CFS/ME and has had it for decades, and is much lower functioning than I - has come out with really inappropriate behaviour at times just because he was refusing to believe in himself that I'm sick. We had a giant row a few weeks ago when he both huffed and puffed and acted put out when I asked for assistance, then criticised me when I tried to do things without assistance and had trouble (I was falling down and he said I was 'flopping about like a beached whale' - not doing my body image any good there!). It was the fact that I was ill and in his mind shouldn't be ill and shouldn't need help that was getting him upset. He did wrote me a nice note of apology in the morning, although some of the words he said still sting. I understand that as the 'sick one' for so long, he is struggling with realising that at times I can't help him and can't even help myself.

moosemama · 12/04/2016 10:07

sweetkitty sorry to hear your ds is being difficult and not accepting your condition. I have been through similar recently. Dh has generally been supportive over the years, but the minute I had a diagnosis he changed and started being very intolerant, refusing to help, moody, resentful. We've been through a very rough patch in our marriage as a result.

As far as I can tell, it was down to the realisation that I'm not going to suddenly get better. I think he had hope that would happen before - even though I've been ill as long as we've been together (and it's our 25th wedding anniversary next year). Once we had a definitive diagnosis it suddenly made it very real and he didn't want to face up to it.

He's starting to come round now. It didn't help that he was also going through a very stressful time at work at the same time.

As suddenly as he started being so unsupportive and moody etc, he's suddenly gone the other way and become really over-protective and treating me like I'm really fragile.

I'm hoping he'll find a middle road sometime soon!

murmuration your situation, with your dh also being so ill sounds really, really hard. I know I find it hard to be patient when I'm feeling really bad, so I suppose that must really difficult to navigate with both of you needing support from one another. These horrible illnesses leave us with so little left over for supporting others, when we don't even have the energy we need to get through the day. Flowers

moosemama · 12/04/2016 10:14

Hyacinth could it be Labyrinthitis? Sounds similar, but wouldn't explain the blurred vision.

I have had episodes of dizziness, visual distortion, unsteadiness and feeling like my legs won't do as they're told fairly regularly over the past few years. Neurology checked me out pretty thoroughly and there were some concerns about possible tia's and also MS, but in the end they just said they couldn't find an explanation. I'm now thinking it's probably just more autonomic craziness, possibly cerebral hypoperfusion (lack of blood to the brain). I have noticed it usually happens when I've overdone it and am in serious spoon deficit and is less likely when I have my pacing under control.

HyacinthBouquetNo1 · 12/04/2016 10:41

Hi Moose, I think there is some problem with my inner ear, although I do have high signal areas in the white matter of my brain on MRI scan. I had to have a lumbar puncture last September but that was normal so the neurologist did not think it is MS. My diagnosis remains fibro but I also have all sorts of crazy symptoms too! Its horrid.

sweetkitty · 12/04/2016 10:48

Thanks for listening he probably wouldn't ready anythibg as he thinks you can just get on with it. That everyone else gets on with it even people with cancer! That's why I'm so upset.

And I've ran out of cocodamol I've only had 2 paracetamol today and my legs hurt so much wil need to go out and pick up my prescription in a bit.

Sorry to everyone else suffering I'm only at the start although have probably been undiagnosed for years can't believe don of you have been suffering for years Flowers cruel illness

moosemama · 12/04/2016 13:05

Hyacinth I also have multiple and diffuse high signal changes in my periventricular and subcortical white matter. Had the lumbar puncture and evoked potentials, but they didn't think MS. They've been through various theories, including being told they were age related (at the ancient age of 36 Hmm) then them being caused by migraines, but in the end have just said they are, as yet, unexplained and to go back if I develop any acute symptoms such as loss of bladder or bowel control or loss of one side of my body. So that's reassuring then - not. Hmm

According to the private consultant I went to see, they are very common among people with chronic conditions like ME/CFS/Fibro/Autonomic Dysfunction, but not thought to be dangerous in any way, iyswim. I worried about mine for years, but since I'm still here I figure he must be right.

The reason I think it relates to my pots is that my report said one suggestion for the lesions could be ischemia and I have read quite a bit recently about hypoperfusion in the white matter producing small vessel type damage/lesions. One BMJ article said:

"The affected vessels are presumed to induce lesions in deep white matter through chronic hypoperfusion of the white matter ...."

Given that I have had pots since childhood and therefore have been chronically hypoperfusive, I think that may explain the presence of wml's at a younger age.

I would love to find a study that looks into the prevalence of wml's in pots patients.

They can be caused by severe migraine and as I suffer from severe, complex migraine too, that is another potential cause, although I think with the number of lesions I have, there are likely to be more than one cause. My MRIs also showed both historic and recent encephalitis. I knew I'd had it as a child, as it was initially diagnoses as meningitis, but turned out not to be. I had also been extremely ill on holiday in Ireland a few weeks before the scan that showed up the recent signs. I was bedridden for almost a fortnight with what I thought was the worst migraine of my life. Turns out it was most likely encephalitis and my neuro was Shock that I got through it without being admitted to hospital.

It is true that many people develop wml's as they age, but they are still only found in 10% of 60 year old patients, so I am not willing to accept being told they are 'normal' at 36 or like one particularly dreadful locum neuro told me, 'everyone has them'. Hmm I think if they don't know the answer some doctors will try and fluff their way through explaining your symptoms away, instead of admitting they don't know. Fortunately my usual neuro had already told me that they weren't normal and required monitoring. That said, a screw up by the crap locum got be dropped from the neuro list three years ago and I haven't gone back. I'd been under them since 2006 with no answers or help, so decided I wouldn't bother unless I absolutely had to.]

... aaand that turned out to be a much longer post than I intended - sorry. It's something I have read and thought a lot about, after spending years under neuro being prodded, poked, scanned and tested - only to be told they had no idea what the problem was or if my lesions were causing my symptoms. By contrast, three appointments privately, with a Consultant in General Internal Medicine and I had my diagnosis.

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