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)

My blood test came back 'fine' so back to the drawing board

Isn't it depressing, that a negative blood test always feels bad? We must be the only group of people that are hoping that they can find something wrong with us

Indeed Alice especially as often the things picked up with blood tests are fixable with injections or supplements and stuff! Sorry Katy that it's yet another unhelpful result. :(

And thank you Alice and Kinky I am feeling pretty pleased. It's been a few years since I first realised I probably had AS, so in that sense it's not really a shock as I've come to think of myself as an Aspie already (but it is very very nice that I no longer have to say 'well I think I am but...' as frankly that made me feel like a hypochondriac - which of course with conditions like CFS we are used to being treated as! :(). Nonetheless I am a bit overwhelmed that it's finally happened, and it was hard work talking and answering questions for a long time, so I am trying to take things easy.

Sorry my memory is crap and I can't remember what I've already said upthread - and trigger warning sorry - but the reason I wasn't dxd when I first approached the mental health team was that the psychiatrist said it was all down to abuse in my childhood (which incidentally my CFS specialist said would have massively contributed to me getting CFS due to the extreme stress it put me under). But I knew it was different, and predated what happened. I was very worried that it would happen again. But I had a really long talk with the specialist, and was able to explain my entire history. And she GOT IT. She was the first person I have ever spoken to who really really understood. She interviewed my parents as part of it (to see what I was like as a child) and she even said afterwards how and why they'd missed the signs, how they clearly love me (it wasn't them who abused me but another family member) but were/are clearly not 'on the ball' and how they just had the child they wanted - clever, passive, obedient - so never questioned if I was ok, because I just kept everything in, and nobody knew a damn thing til I started cutting myself. She said how when I went into crisis and ended up in hospital, everyone (understandably) put it all down to the abuse but she could see that it wasn't all about that. The one thing that's freaked me out is that she explained how my AS-related passivity may have 'helped' my abuser because it made me shut down more than a neurotypical child. I'm not sure how I feel about that - if I'd been 'normal' would I have told someone sooner? :(

Sorry I've gone off on a tangent there but damn it felt good to actually have my entire life, for want of a better word, validated - I've spent years wondering if I was viewing it all wrong, but to have it all explained back to me by her was actually what made me nearly cry, rather than the dx itself.

Eep, haven't posted here in so long it fell off my TIO.

Glad for you, fuzz. Knowing something's real can make a big difference. But don't hold guilt about anything from your childhood - everyone has the right to be themselves, and it's the fault of the abuser not the abused - you were just being you.

I meant to comment on the ASD link -- I have a few traits, although I don't know if I'd come out as a full-fledged diagnosis. I wonder about DH, though (also has CFS, much more typical presentation than me). He has a lot of traits, which once I've seen can be associated with ASD, it has helped me be less cranky with him at times :) He sometimes just doesn't get that some interactions (or non-interactions) can bother me.

Getting near end of second week back at work. I'm glad I had my time off, but I feel like I'm just as exhausted as I was before. It was really only that very first day that I actually felt 'good' about dealing with things! Makes me worried that I can't really handle a full-time job :( Yet, as I'm the only one bringing in money, and in my field part-time isn't really part-time, it's just less money (until you go to 50% or so, when you can really say, "hey, I'm only on a half contract here!"), I don't have much options but to go on. And I do like my job, and would very much like to continue to progress in my career.

I did talk to one person who was very sympathetic - I think next time I may go sideways to her for cover (and, actually, we've just restructured so that she's the next in the chain for handling those issues, anyway, so it would make sense). I've been disappointed in the reactions of a senior guy who I thought understood - his wife, in the same career, has chronic pain - but I just got a lot of "We're all tired" and so on. Made me feel a bit of a wimp.

Gosh Fuzzpig, it must have been quite a relief to finally talk to someone who understood. Having DS1 who is high functioning ASD, I can see how that could happen. DS1 finds it very difficult to communicate his feelings, as he doesn't understand them himself very often. I'm glad you have been able to find some understanding and hopefully you'll find it helpful in the longer term too.

Murmuration I think it makes sense to seek help from the most supportive people. It is frustrating when people you think understand, do or say something that shows they don't. I'm in one of the worst relapses I've had for a long time & an acquaintance, who'd popped into our house the other day, mentioned I wasn't looking too good. The person knows I have ME/CFS and has been sympathetic in the past, but after I said that I was going through a bad patch, they then proceeded to talk about how tired they were, because they hadn't been getting enough sleep recently. I didn't say much in response, because I wasn't sure if I was being over sensitive, but afterwards I really felt that they were implying that I was just a bit tired.

It is frustrating, but I am learning to shrug off attitudes likes that, as I can't afford to waste the energy getting worked up about it.

Well, this morning my GP diagnosed me with Joint Hypermobility Syndrome, as suspected. She doesn't know much about Ehlers Danlos Syndrome at the moment but thinks it fits so is going to read more up about it and get back to me

And she thinks the ASD diagnosis will be a cert too.

I also picked up some rosehip in Holland & Barrett today as I can't take anti-inflammatories due to asthma. I hope they work - £35!! Anyone have any experience?

If you have Ehlers Danlos you need to check out Postural Orthostatic Tachycardia Syndrome, (POTS), there's a genetic link and it's present in about 30-40% of CFS patients, as well as in autoimmune illnesses.

Read up on POTS yourself online.

Thanks Yseulte A few months ago I was diagnosed with BPPV -- Benign Paroxysmal Positional Vertigo - I wonder if that might be a symptom of POTS?

Oh god, from reading this is does sound possible

www.potsuk.org/symptoms

Thanks, citra. I wonder if it's maybe misplaced sympathy? Like they think it'll make us feel better to know other people are tired too? But it just comes off as dismissive. This fellow is one who will do things like provide advice for promotion, so it matters what he thinks at least a little bit. But maybe the trick is to just not talk about it much. And remember that my line manager's son has CFS, and was so bad he was bed-bound for 2 years, so has to know how debilitating it can be. One would think...

I'm actually wondering if I just have POTS instead of CFS + POTS, as I match so many POTS things and go a bit sideways on many CFS things. I don't know if they'll be able to test for it, though, while I'm on my meds, and it would be a massive impact to stop taking them. So not sure I'll ever get any answers.

alice have you actually had trouble with anti-inflammatories. I have asthma and have not had any reaction to them.

sofia Yes, I have, unfortunately. I've only had asthma a couple of years and I'm still trying to get it under control anyway tbh. No big 'asthma attacks' as such, but still getting very out of breath with minimal exertion. Though I'm thinking this is maybe a symptom of POTS too?
I also reacted badly with ibuprofen with one or other of my other meds too and had horrendous stomach cramps.

Alice, yes, that's a symptom of POTS! I got inhalers for years for 'exercise induced-asthma'. They never did any good. Can you take your pulse when you're getting out of breath? Mine sometimes got to 240 just heading up a flight of stairs, although when on poorly-working meds (what the first gave me in this country before I got mine off-license) it would go to only 160-170 and I still felt very out of breath. When your blood is moving so fast it doesn't do the appropriate flow into and out of the alveoli in the lungs and so oxygen transfer doesn't work properly. Your body interprets this as 'trouble breathing' so you start gasping, etc.

If you think you might have pots it's worth getting a blood pressure monitor so you can check it yourself.

I got mine for about 40 quid on eBay, new. It's very good.

Test when you wake up lying in bed. Then test as soon as you stand up, then 2 mins after you been standing, 5 mins and 10mins.

Test it before a flight of stairs, after. Then 5 mins after.

Test it before exercise, stop during exercise to test it. Then 2,5 and 10 mins after.

If your heart rate is jumping a lot when you change position, and you feel s bit faint, then its quite possible you have it.

Another key symptom is 'exercise intolerance' which means your heart doesn't speed up when you exercise. Or, like me it goes very fast so you get very breathless, and then doesn't slow down as normal afterwards.

My resting pulse is 100-120 bpm and my bp is generally 90/60.

If you think you might have it you can ask to be referred to a POTS/Autonomic, who will do some of the tests I described above. You will do a tilt table test, to measure the drop in blood pressure.

I'm not a doctor so I've no idea, but it's possible if you've never had a big asthma attack that you don't have asthma.

POTS/Autonomic consultant I meant.

Essentially your autonomic nervous system has gone a bit wrong, it affects your bp, heart rate, temperature regulation, digestion (gastroparesis), sweating, all your body's involuntary responses.

Would this do the job?

www.amazon.co.uk/Wellex-Blood-Pressure-Monitor-Medium/dp/B00CJM95XK/ref=sr_1_7?ie=UTF8&qid=1446853593&sr=8-7&keywords=blood+pressure+monitor

Looks like very good value.

You could just wait and be seen by a specialist and be tested then. It's just that I like to have an idea of whether I'm likely to have something before I make a deal and ask to be referred.

Fuzzpig glad you have some certainty about the AS. The abuse was not your fault, - it is never the fault of the child. When my son was Dxed with ASD (not high functioning) it helped a lot to understand him better, and support him more confidently. I did get a bit down about it (after the initial relief)- even though we were pretty sure- because its sometimes hard to accept there is no longer a 'simpler' easier to sort reason. I used to feel guilty if I said he was autistic before we were certain.
I have Asthma (confirmed by bronchoscopy etc) and presumed Pots (and CFS), and like Yseulte get breathless when my HR is high (even if I am not wheezy). I use an O2 sats monitor (bought for another condition- was O2 dependent for a while) that clips on my finger and gives a quick HR reading- but they are very expensive. For monitoring heart rate (especially when out and about) a simple sport HR monitor such as used for fitness training might do - but of course it does not measure blood pressure - and its unlikely to be as well priced as the blood pressure monitor you found Alice ( but you might be able to borrow from a fitness keen friend?). Some people have Postural Hypotension (where BP falls on standing or soon after) which can be with or without the HR changes of POTS.

thanks all

I'm really crashing ATM not physically but mentally, I just want to cry. I should be at work this week, it's the event that I started, I planned, I put a huge amount of work and love into it and I can't be there to see it happen. It's lame but I feel really left out and forgotten about TBH, it feels bad enough that I've heard virtually nothing from anyone in the few months I've been off, but the fact it's still the case now is just making me feel like absolute shit. I know that's pathetic, attention seeking and stuff, but I just wish people even noticed that I'm not there, or that I felt I mattered.

Really need to stop this stupid spiralling mood but not sure how. I'm trying to remind myself that there's a whole week left of the event and maybe it'll change but my virtually non-existent self esteem is convincing me otherwise :(

Interesting to read about POTS - i'd never heard of it before this thread. When i received my fm diagnosis the only thing in the long list of symptoms that didn't fit was frequent shortness of breath/light headedness/palpitations. Obviously a lot of the other symptoms overlap.

Going back a bit re exercise (i've not been on here much lately), i find most forms of exercise nearly impossible, but have practised quite a dynamic style of yoga for years. When i'm feeling ok and the fm symptoms are reasonably in abeyance i can establish a daily home practice to supplement classes, and it does help to keep a lot of the symptoms in check. The problem is that the smallest thing brings it to a crashing halt, especially viruses or other minor illnesses, and it can take months to re-establish a practice, so i feel like i'm constantly starting from scratch. I had wanted to train as a yoga teacher so find it incredibly frustrating.

I also find my symptoms are linked to my hormonal cycle - there is always a big crash towards the end of my period, followed by a few better days before the whole thing starts ramping up again. I had an amazing pregnancy as all my symptoms completely disappeared and for those precious few months i felt like me - apparently this is quite textbook for fm. I wondered if anyone else had experienced similar?

Wish i had something positive to offer those who are having a hard time at the moment, other than empathy.

Still thinking about the PoTS thing. When I had my first 'attack' and was diagnosed nearly two years ago, although I was having difficulty in breathing, my o2 readings were fine. Even when I'm struggling now, my peak flow seems fine, though always low (so I've been told) about 400-420. My spiromtery apparently confirmed asthma though. I'm not really feeling much benefit from my inhalers - 2 blue and 2 brown, morning and night, and 2 blue as needed - and am breathless even when sitting. I know that starting smoking against hasn't helped, but I am very very stressed and smoking is easier to fit in with the kids than vodka is

From this, does anyone know if PoTS sounds likely/possible, or not?

Katymac
Some time ago, I think iot was you mentioning how you felt better for about a week after your B12 injection but your GP didn't want to give it to you more than every 3 months.

I can accross this website about vitamin B12 with some excellent link to the NICE recommendations and vitB12 deficiency has some symptoms very similar to ME (incl pain and chronic fatigue).

Maybe worth a read and some amunitions to you to see your GP.

Not a doctor Alice so I've no idea, but it sounds much more like asthma.

(Please don't smoke - so bad for you - I gave up when I got ill and it was really hard - but now I don't even like the smell).

PacificMouse unfortunately now my evel is 1808....so sky high (because of supplementation) so the GP is not talking about stopping them

I am trying to persuade them that as it is a placebo that seems to work please can I have more.....