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)

Oh that sounds really hard Alice I find new places really tiring too. I managed a day out today and I enjoyed it (and it was quite restful for me, not a lot of walking) but I know it'll hit me in a couple of days!

Murmur re: work, all my colleagues know about the ME and POTS. One lovely colleague, who is now a supervisor, has a DD with POTS as well so she is very supportive and also tries to increase awareness and understanding in other staff. There is a divide though, between people who want to understand, and people who have their opinion and are sticking to it. I know there are people who still think I'm not actually ill but I just have to try not to let it get to me (if anyone actually finds out how to do this, please tell me... it's so hard). I can certainly say that I have spent a LOT of time wishing I had a visible illness, or a broken leg or something, rather than something that nobody can see.

Re: the autism assessment (and not a problem to ask about it at all :)) - I was sent some questionnaires. Two were tick box ones with lots of statements, and the third was a 'self report' thing with about 10 questions like 'please write about your experiences of friendships and relationships'. I then took these with me to the assessment. She looked at them but I noticed she didn't actually count up my scores for the tick boxes, she just asked me further questions based on what she read. It was about an hour of talking, I had to talk about my childhood and my life now. Some questions were very open, like being asked to talk about my education history, and others were very specific like 'if xxx happens, what would your reaction be' etc. After that, she called my parents in. She did say that normally I would leave the room for that bit but she was happy with me staying - I was very nervous. I just stayed mostly quiet while they were talking although did chip in with a couple of examples when they couldn't remember stuff. They were asked lots of questions about what I was like, focusing mainly on age 3ish but did go right back to my birth. Again some questions were very open, and some very specific. She then said she was going to give feedback and asked if I wanted my parents to stay in the room for it, I said no. So they left again and the specialist told me that I have Asperger's. She talked about it for a little while and related it to my experiences, and said she is going to write a report which should arrive in the next couple of weeks. It will also include information about support groups and stuff, but she did also say she is happy for me to email her. I will meet with her again next month but it's only if I want to (I think I will).

Thanks Maggi you are so right. There are a lot of misconceptions about CFS, and a lot of misconceptions about home ed too. I have considered writing a diary for a school day and a home ed day because I am so sick of being asked the question in such an accusatory way.

I don't drive (and even if I had learned, I wouldn't be safe to drive now anyway because of the dizziness and brain fog). So we walked to school, rain or hail or snow or whatever. It's 15 mins to the infant school, then maybe 10-15 mins standing (standing still is Not Good when you have POTS!) waiting for class to open and talking to teachers and stuff. Then another 10 mins to the junior school. Of course this often included one or two very upset clingy children who had to be physically manhandled into the building. And then the walk home. Uphill. With no bus. By which time I would be incredibly dizzy and in a lot of pain. I'd flop on the sofa and be unable to move for hours. Then I'd do it all again at 3pm, having to drag overwhelmed miserable stressy children home. It is really not the same as bundling them into a car and waving them off into school at the other end, as a lot of people seem to think it was for me. People forget that (a) not everyone, you know, has a car and (b) not all children are happy at school

Also - and I apologise for going off on a tangent here - a lot of people think it must be awful having to entertain my DCs all day. I don't actually blame people for thinking this, because I worried about it too, but I really wish they would LISTEN when I explain how it actually works. When my DCs were at school, I dreaded the moment they would spill out of the school door at the end of the day, and dreaded the afternoon and evening with them. Because they had suppressed all their energy and fear and frustration all day, and unleashed it all on me. Believe me, I wouldn't want to spend all day with those children either - holidays were incredibly hard (and just when they started to wind down, it'd be time to go back again). So people think that what DCs are like in the holidays are what they'd be like all the time - but it's not like that at all. They have changed enormously since they came out of school. They are happier and they have more free time so they aren't wound up. They are much more relaxed. They are actually a joy to be around now, and I no longer wake up full of fear for what kind of mood they'll be in.

Also, people really often don't understand what home ed actually looks like (and again - people don't seem to listen when I explain it, because they keep asking the same old question again and again). They seem to think it means being a teacher. I could never be a teacher! Or maybe they think it's as full on as having a toddler or preschooler who can't do as much for themselves. It isn't! We do most of our learning on the sofa. We don't spend much time on it because we don't need to. If they're doing book work they bring the stuff to the sofa and curl up with me. They're 8 and 6, they know where the stuff is if they want to do painting or clay or use the Numicon for their maths or whatever. If we need the computer, it's a laptop so again it comes to me and we do anything like word processing or watching educational clips on youtube. A lot of the learning happens without me making any effort at all (and it's been a real surprise how quickly that's started happening). Last night for example DD was writing questions she wanted to ask at an upcoming museum visit about Ancient Egypt... and then translating them into hieroglyphics :o that's the kind of thing they might have done in school, but because it was just DD, I didn't need to plan or 'manage' it like a teacher would need to for a class of 30.

Sorry for ranting and probably for sounding very preachy about home ed. It's nice to be able to write it all down - it is what I wish I could say to many people, but they don't listen. Or they don't believe what I've said because it doesn't fit with their existing view. Conversation with manager yesterday actually included the phrase "I know you said that it's easier because xxx, but..." :(

I'm really struggling with this because I hate any bad feeling and confrontation, so even though I should think 'fuck it' - especially if I end up leaving my job - I just can't bear the thought of how badly they think of me, and knowing that for some people NOTHING will change their view and they'll always think of me as a liar or lazy or a bad mum or that home ed made me sick so it's my fault or or or... :(

Hi murmuration. Things are pretty bad at the moment. I'm struggling badly, I must admit.

I find the whole work situation to be really difficult too. I'm ambitious, and hard working. I've been off work since Friday and I'm already cracking up. I'm feeling suffocated, and miserable. I don't really know what to do. None of my colleagues know. I'm going to have to have the talk with my boss in the coming days. I thought that I could soldier on without having to tell anyone, but that's not going to work.

Sorry, I feel like I'm being a bit self indulgent and wallowing. I feel so ill, I've been fighting vomiting all night. Another crappy night.

Hi Shadows - i'm another unwilling member of the fibro club. I had to give up my career about 10 years ago now. It was something i had a real vocation for and had worked so hard to achieve. I'd already had to give up my first area of work as i couldn't cope with the physical demands of it (i had an incorrect arthritis diagnosis at the time).

I didn't have the fibro diagnosis when i had to leave work, so it was hard to come to terms with quite what i was dealing with and what the long term implications were (this time the focus was on my mental health). The last 10 years have been like being in the wilderness. It took a long while to realise that i would be unlikely to hold down a regular job again, and it is only now that i've been able to build something for myself again.

There are people with fibro who can continue to work, but of course it is so variable in terms of severity of symptoms, reasonableness of employers etc. You definitely need to talk to your boss. Have you had a look at the Fibromyalgia Action site? Their forum has a section on benefits and employment issues. Is there anything your employer could do to make it easier for you at work?

Fuzzpig - i so hear what you're saying about school. It was an awful experience on the school run that prompted me to post on here initially, and i only have one child and a 5 minute walk! As it is some days i can't even do that and my dh has to leave work to come and get him, which then makes me feel terribly guilty.

My ds has been a nightmare at home since he started school and i think it is the same thing - having to keep it all in while he's there, so he is virtually exploding by the time i collect him. He was really well behaved before, and now i find the couple of hours post-school harder than when i had him home with me all day. I had thought seriously about home schooling, but wanted him to at least try formal education first. I completely get why it works for you, and certainly wouldn't rule it out in the future for us.

fuzzpig Have you thought about blogging about your experiences with your health and home edding? I have other friends with chronic health problems that home ed and find it so interesting how you manage to juggle things.

I am also in the camp of having a child who holds it all in at school then unleashes the beast at home. She's currently being assessed for ADHD and ASD, and I'm to-ing and fro-ing about medicating her. I'm really not sure if it will help, as she behaves really well at school, and that's the hours she would be medicated for. Do you think it would help her maybe not having to hold things in so much? Her older sister also has ASD and ADHD and is medicated but just because it works well for her, doesn't mean I'm keen to do it with DD2 if that makes sense?

I've not worked since maternity leave with DD2 (7). I was supposed to have done my degree and training and be teaching by now, but because I am a carer for DD1, it hasn't happened. Now I know with my health I'd never manage anyway. Even my doctor has said there is no way I could hold down a job. Hopefully that will go in my favour when I apply for PIP, which I hate to admit, but I need to as I'm really struggling

I have both DC home with me today as they have been unwell (since having their flu spray on Monday!) Although DD2's incessant chatter is driving me round the bend, she is coping much better than if she'd been at school all day.

Thanks I have got a blog set up but haven't dared post on it yet :o but I am planning (and have started writing) a post called 'how can you homeschool when you're sick?' I want to post a few non-controversial things like activity ideas first though.

School runs are horrible. One time when I was carrying my distressed 5yo into the playground, another mum laughed in my face because DS looked like he was having a tantrum :( so many times I'd be in tears when I got home. Sometimes I used taxis which we couldn't afford. Big sympathies and I totally understand how a 5 min walk can still be too much!

Well fuzzpig I for one will certainly be interested in reading your blog, so please do let us know when you're up to it.

My DD2 was horrendous at drop off, screaming, crying and refusing to go in - two years at nursery, then all of Primary 1. Come Primary 2, I told her to walk to school herself. We still get the "I don't feel well, and tears most mornings before school but once she's out the door, she holds it together. We live across the road from school though, so I wouldn't recommend it to everyone

I feel for all of you. We live about a 10 minute walk from ds' high school, but most of the time he doesn't have the energy to walk to and from school AND do a whole day of school, so I drive him both ways most days. I have many friends who know all about his mitochondrial disease and still question why I don't let him "just walk...he's old enough." We need someone famous to come out about their mitochondrial dysfunction/fibo/CF and then maybe we won't have to keep saying it over and over to people who really should know better.

Indeed Sofia and isn't it a sad thing that as a society we need celebrities to tell us how to be accepting :(

Thank you Alice I shall keep working at it. I have a camera again now so I can at least start taking pics to do craft activities which I can post first (so much less scary than an 'opinion' piece IYSWIM)

The walking uphill thing is so true Fuzzpig! And I don't mean proper hills but the sort of very mild gradient no one else would notice! I had always thought of the street I live on as flat until I got CFS- actually is has a very gentle gradient which makes walking back home much harder. Also standing still like in a queue or politely is really hard. I've learnt to jiggle my feet which helps.
I wondered about home-ending my son, because school was so difficult for him, (square peg in a round hole) but suspected I would not manage well as ds is so hyperactive and impulsive - even now (year 11) he needs constant supervision. But for us holidays are usually easier because ds gets so anxious and tends to hold it together mostly at school and explode at home.

Yep and when it's uphill you then have to weigh up the balance between walking slowly but finding it really hard, or walking faster to get it over with but then getting more tired or dizzy because you went too fast.

I often got told off for leaning (!) at work, I wish I'd known earlier that I had POTS and CFS as it would've saved a lot of wondering about why I couldn't stand up straight like my colleagues!

www.slate.com/articles/health_and_science/medical_examiner/2015/11/chronic_fatigue_pace_trial_is_flawed_should_be_reanalyzed.html

sanfrancisco.cbslocal.com/2015/11/11/palo-alto-family-battles-with-sons-mysterious-medical-illness/

Davis, one of the world’s leading biomedical scientists, is determined to unravel its mysteries.
A substantial number of major genetic advances can be traced back to Davis’ remarkable intellect. Now the biochemist, geneticist, and inventor has turned his attention to Chronic Fatigue Syndrome.
He’s asking some famous colleagues to pitch in.
“I’ve gotten three Nobel laureates that said ‘Absolutely sure I’ll help,’” Ron said.

I talked my parents into meeting with Dr. Davis some time ago, but I'm not sure they learned much unfortunately. He should read this thread instead!

I have an appt at the local private hospital (probably with the wrong type of consultant - a gastro)

What on earth do I say? "Give me B12 please" or do I have to do the whole bloody thing?

Hello :)

I'm wondering if this is where I belong!

I've had a nightmare 3 years post pregnancy. I've had hypothyroidism since I was 21 but a lot of boom and bust due to trying to be normal and succeed in life. And probably wasn't well managed / took mess correctly.

During pregnancy the thyroxine I was on was faulty so I wasn't great. Then on too much as hospital didn't know. Post pregnancy I didn't go back to original dose - stupid me didn't chase it up - and I became very weak.

I've always always lost weight and got terribly weak when not adequately replaced. However after really getting ill this time Following a period of not enough thyroxine, being put on sertaline which was initially great but later found to interfere with thyroxine, then on far too much thyroxine while trying to correct everything - I was diagnosed with hypermobility syndrome, which makes sense (taken me 10 months to accept it).

The primary issue is the thyroid stuff and I think I fell into a sort of CFS situation as my muscles were so weak. I hadn't stopped pushing on.

Recovery has been long and very painful. Still is!

My marriage is on the rocks. Dh not the most understanding.

I'm now back at work - 2 days - but it's full on. I teach children with ASD, but in different classes. Pacing is not happening!

I've just had a gawd awful flare in my muscles pre period for a week. My spine, ribs, shoulders and pelvis. Itching, on fire, stiff, horrendous.

I'm plucking up the courage to ask go to double check not inflammatory arthritis or AS, and maybe try the mirena coil.

I know I am slowly getting better, I'm just not sure my pain will ever go now :(

Thanks for reading.

Hello all, I have been signposted to this thread by another poster waves to claraschu

At the beginning of last year, I experienced a prolonged period of illness which my Dr believed to be glandular fever (although a blood test returned a negative result). I haven't been able to regain my health since then. I'm so, so exhausted. I never feel refreshed and full of energy and it's so frustrating as my motivation to want to do things hasn't changed, but my physical ability is awful.

I'm also experiencing other CFS type symptoms, some are all the time others fluctuate a little.

I'm due to be seeing the local CFS team the week after next but I'm very anxious about being pigeonholed into a diagnosis incase there is any hope my symptoms are a result of something that is treatable. The thought of this being my life forever is unbearable. I feel trapped inside my own body.

Can anyone advise me what tests I should be requesting to rule out other conditions? In previous blood tests my iron stores are regularly found to be low, but taking the iron supplements doesn't resolve my CFS symptoms.

Thanks in advance and to everyone experiencing this horrible condition in themselves or their loved ones.

Hi tiptops - I do know I started to recover once my ferritin was over 80, stopped taking iron at 130. Took a few months to get there.

I assume thyroid has been tested? If so do you know results?

I believe vit d can be a big help. And b12.

However, I've heard of glandular fever being an issue before.

Thanks for your reply Clarella

I only have a printout of my most recent blood tests so not sure what my levels got up to when I was actually taking iron tablets. Although I am due to have another blood test now so will make sure to get a copy of the results.

Have attached my results incase I'm looking at the wrong reading but I think my result for 'serum tsh level' was highlighted as being 3.79 when the ranges are 0.35-3.50. Sorry it's a photo instead of a scanned copy.

Don't think I've ever been tested for vit D or B12. Will ask if these can be covered in my next blood test, thank you.

Thyroid function can be affected by viruses, at the same time the tsh could be being raised by your body in order to try to recover. The tsh is a bit high; it generally is 10 before they treat. The t4 is low, a GP would argue this is ok and we could presume your body is trying to pump out more t4.

Others might say you are struggling a bit on that score. I'm not a Dr but I think it's fair to ask your GP to perhaps keep and eye on it and monitor. It could be a factor that is causing fatigue. I could not be well with those scores, but my thyroid does not make t3 as its damaged. You will make some t3 of your own. It could be measured but it's very variable during the day.

Ideally, they could test antibodies for thyroid as this would indicate auto immune thyroid disease and possibly the start of it now.

I'm sorry, it's a very very grey area. I think it's reasonable to question it being out of range and ask for it to be monitored, tsh usually changes slowly so it would be every few / 6 months.

Also, if your thyroid had had a hit, it can take a while for everything to recover. It's been taking me 6 months of pacing for my body to feel as good as my blood results say.

Some would say your thyroid needs treating, it's hard to get a GP to agree as they follow the nice guidelines. You could ask for a referral to an endocrinologist as your symptoms could suggest an issue.

Your ferritin is appalling though!

Definitely take iron with vitamin c to help absorption.

Tiptops www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf

Differential Diagnosis:
When indicated on an individual basis, rule out other diseases that could plausibly simulate the widespread, complex, symptom pathophysiology defining ME. E.g.:
Infectious disorders
: TB, AIDS, Lyme, chronic
hepatitis, endocrine gland infections;
Neurological:
MS, myasthenia gravis, B12;
Autoimmune disorders
:
polymyositis & polymyalgia rheumatica, rheumatoid arthritis;
Endocrine:
Addison’s, hypo & hyper thyroidism,
Cushing’s Syndrome;
cancers
;
anemias
: iron deficiency, B12 [megaloblastic];
diabetes mellitus;
poisons

Found out today some relatives don't believe Fibro is real. I wonder if they think I'm just sitting around, twiddling my thumbs for the heck of it after weeks signed off work.

Really fed up.

I also wonder if they think DSis, who has ME and Fibro, was just making up the awful time she had through her twenties.

I know I should ignore, but makes me feel .

Interesting