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)

So, I've been carefully documenting my symptoms, doing active stand tests etc and preparing a document to go to my consultant for him to review the meds. Then I realised this morning, after two hours of preparing the documents into a sensible format for him to review, that I have been doing it all wrong and he wanted me to do the stand tests two hours after taking my pill.

So I'm back to square one and need to do a stand test every evening this week and send the results at the end of the week. Problem being, I will only have a week of the pills left then and really needed the consultant's response to discuss with my GP.

Not sure what he's going to say to be honest. So far, they seem to be helping a little, in that I am doing ok at a 2 minute stand, but by 3-4 minutes my symptoms kick in pretty hard, probably worse than before the meds to be honest and the bbs aren't stopping my heart rate from shooting up from there. The morning after my second pill I couldn't even stand for 2 minutes without full on pre-syncope and only managed to stop myself going down by a hair's breath. Luckily I was standing by my bed at the time so had a soft landing!

He could titre the dose upwards, but for the fact my heart rate is dropping as low as 46 in the night and then I get a sudden dropping feeling that wakes me up, followed what feels like an adrenaline rush and all over the body restless legs. Also, my bp has been 83/52 in the night and is generally in the low 90s over low 60s in the day, so I don't think upping the dose would be a good idea from that point of view.

On top of that I've had episodes where my oximeter wave readings have been all over the place, reading a steady heartbeat and SATs, but the wave is really erratic, flatlining, then shooting to max peak, then skipping long beats, then three or four close together. I feel absolutely dire when this happens, struggle to breathe and speak, just out of it really. I suspect some sort of fibrillation or flutter that the oximeter is too basic to pick up, so the heart rate I'm seeing isn't accurate. I managed to get dh to video a couple of these episodes and will take them with me to the cardiologist at the end of the month.

Seriously thinking about telling him to shelve the meds for now and see what I can do with non-pharm measures in the first instance. I'm thinking supplements (need to do some more research on that), recumbent cycle, free weights for arms and compression leggings/tights. I think this is worth a try, not least of all, because I have 4 stone of weight-gain to lose from this latest crash and the beta-blockers could potentially stop that happening.

Oh - and I've had to start salt-loading, as my sample came back as less than a third of the sodium there should have been.

Sorry for the multiple posts. It's so long since I posted, I keep thinking of something else.

Forgot to say. My mum has had her echocardiogram results back and she has dilation of the ascending aorta. The report says 'investigate for connective tissue disorder (EDS). So for the first time ever we have some sort of medical consensus that the family most likely has EDS in it.

Unfortunately, DM had just been to the GP to ask for a referral for EDS diagnosis that morning. She saw a locum who told her 'I don't know much about EDS, but I can tell you - categorically - as your doctor, that you definitely don't have it.' The echo results were on the doormat when she got home.

DM has since been back to see her usual GP who has made the referral to rheum with a suggestion she be referred to a specialist unit for EDS investigations. She is pretty much a clear cut case, multiple joint replacements as a result of joint over-use/arthritis, urinary and uterine prolapses, incredibly stretchy skin, extremely hypermobile hands and repeated shoulder dislocations that have required surgery to stabilise. I suspect she also has MCAS, as she is allergic to practically everything - even having a bad reaction to the week-long holter ECG, which stretched and tore her skin when the pads were removed. Even her ortho surgeon, that did all three of her joint replacements has told her and commented in her notes that her soft tissue and ligament reaction and recovery to/from surgery is highly abnormal.

My GP said as soon as dm is diagnosed, she wants myself and all my dcs to be followed up and that I should ask for an echo at my cardio appointment.

The strange thing is, the answers are forthcoming for the first time ever. We've all struggled for years, with no-one listening and refusal to accept our suggestions that it might all be related. Yet now we're making some progress I find myself overwhelmed and wanting to just run away.

I fell off the thread as wasn't able to look at the screen for a few days. A new, and unhelpful, joy of the fibor/chronic headaches.

I'm back to work tomorrow and I'm really scared. It sounds silly, but I'm frightened my body won't let me do my job any more.

I'm not ignoring the previous posts, I'm going to have a read through now.

to all.

Fibro even...

Thank you all for the supportive words.

I was taken off all meds again on Friday after the GP conceded that I seem to be very sensitive to them. My reaction was beyond what he would expect. He's suggested I get 'clean' before he gives me anything else. However, the break over the weekend has settled me down a bit, so taking the plunge and going back tomorrow, as I said in the above post.

moose it is so good that you are getting answers, but I can understand how strange that must be after having the fight for so long. I've been through the battle with DD's Aspie DX and DD's cancer DX (they said I was an overbearing mother for 3 months whilst she got sicker and sicker). When the Dr told me she had leukaemia, I thanked him. He said nobody had ever said thank you after being told. I said it was the sheer bloody relief of finally knowing what was going on and that it meant I wasn't just so over protective loon. So, anyway, I understand why it feels odd to finally just have the answer.

Moose
Kinky..headaches can be evil.
Well, after my hideous virus last week I thought I was on the mend but feel awful again today.
Also....and you are quite welcome to laugh at my decrepitude :)....I was told by the physio yesterday that my right leg is longer than my left and I have to wear orthotic inserts in my shoes! Add to that the losing teeth and varifocals I'm feeling quite 😖 ATM!
Ds2 has come home with a high temp and his classmates are dropping like flies from a sickness bug so just hopin it's not that :(
Ds1 was off yesterday and today due to a burst water main at the school.
I was so looking forward to going for a coffee with mum tomorrow....oh well. Best laid plans and all that!
Good luck tomorrow kinky X

Kinky glad your GP listened to you and took you off the meds. Good luck when you go back.

Sounds like you have been through a lot - I've been through a fight for ds1's ASD dx and I think it does sensitise you to lack of belief and support by doctors etc. I can't imagine having to deal with one of my dcs having leukaemia and it's so wrong on every level that you had to fight to get your dd dxd.

Badders it's not just you and I'd be a hypocrite to laugh. Both my dm and myself have one leg longer than the other - well Mum did, but now has equal length legs for the first time ever, since her joint replacements. She's two inches shorter though! I broke a quarter off a back tooth last month and still haven't been to the dentist. Same quarter broke of the corresponding tooth on the other said in the 1990's and I've never had that fixed either, even when I saw the dentist about something else he said it was probably best to leave it. Really need an eye test, but dread going, as I honestly can't face being told something else needs fixing. So I know what you mean about feeling like you're dropping to bits - literally. I have started getting nystagmus when I'm at my worst, but I doubt it's anything an optician can do much about, just more dysautonomia.

Sorry to hear you are still poorly after your virus. I'm struggling to shake mine as well and now dh has it too. I will keep my fingers crossed your ds doesn't have a sickness bug.

I've been back to the start of this thread and been reading some of the mito stuff. I am fairly sure this is at the root of my issues, read up a lot about it years ago, but then lost the plot with it all. I'm considering re-starting supplementation, specifically the mito-cocktail, but am worried about the cost and need to be really sure it's the right path for me first.

Dh is really run down at the moment too. He actually took the day off sick yesterday, after catching the virus I had last week and that's almost unheard of. He's also had two tongue ulcers and a blood blister form on the roof of his mouth over the weekend, which I reckon is a sure sign he's totally depleted. I've talked to him about needing to supplement - and eat more (his diet is super healthy, but he doesn't take in enough calories).

So, I've at least ordered some Opti 3 Omega/Vit D and VegVits, which will be a start and will add the others in bit by bit, probably starting with some sublingual or patch B12.

Stand tests aren't going very well. Either getting ok readings up to 2 minutes, then errors and arrhythmia warnings or still going over the 30 beats as early as 1 minute then getting pre-syncope and ERR + arrhythmias by 5. Dh actually stood up to catch me as I tried to stay up for 5 minutes last night, he was convinced I was going down. I've also had a lecture for doing a stand test when I was on my own this lunchtime.

badders - you make sure you still get some time for you. Hopefully DS will be okay. Is your leg something that has changed through posture or has it always been longer?

Moose...that sounds horrendous. Do you have to do them often? You have just reminded me (after running round after kids all day and going to work) that I haven't done my physio exercises!
I shall do them now..:thank you!
Tbh kinky I have no idea re leg...always had issues with that knee since puberty anyway and 2 episodes of bulging lumbar discs - the dr seemed quite concerned last week when I saw her!
Hoping these inserts help...I also have a neuroma in that foot which thinking about it i should have mentioned to physio!! Oops.
I dunno...I got GF when I was 18 which I think started the whole inflammatory side of things
Became ill after flu in 95 dx with me in 97
Loads of health issues since inc fibro dx in 2010.
Since I turned 40 it's all started to go wrong really...gallstones, teeth, peri menopause, such pains in my joints I mainline paracetamol, heminplegic migraines, bowel problems....I could go on...
On the plus side had loads of tests in Jan and gynae scan and colonoscopy were normal
I'm just...getting older I think
I have very mixed feelings about the fibro dx tbh
I think I'm peri menopausal which is causing me all sorts of fun times but also there is some underlying issues which I don't think has ever been addressed.
I tested + for lupus but the rheumatologist told me they don't dx on blood tests alone so basically come back if you get more ill.

Meh.
I'm coping
I struggle when dh is away or I'm ill but other than that not too bad
But sometimes it gets me down....coping isn't really the same as living is it?
X

Well, I was doing them whenever I felt well enough to give it a go, because they make me feel so rough afterwards. BUT, I then re-read the consultant's letter and realised I am only supposed to be doing them two hours after I take my pill.

So, I have two weeks worth of data that he doesn't want and now have to do it properly this week. I wanted to throw in a morning/lunchtime test as well though, as I wanted to see if the effect diminishes after a few hours.

It doesn't really seem like they're helping, but if he wants to up the dosage I won't be happy, as my heart rate has been as low as 46 overnight on several occasions and my blood pressure around 83/52. Daytime blood pressure rates are usually low 90s over low 60s too. Not sure I'd want it lower than that by choice really.

Cardiology at the end of the month, then back to the POTs guy mid-April, so will just have to wait and see what happens.

I've also had low bp in the past and God it makes you feel rough! Once, it was as so low the Dr couldn't get a reading!

That's what I'm trying to avoid. My bp was normal/healthy range before this, averaging around 110/67 ish and the bb's have already dropped my levels, if I go up a dose the readings will almost definitely be too low and as far as I'm concerned there's no point in swapping heart-racing exhaustion for low bp exhaustion. Just hope the consultant thinks the same.

I thought beta blockers were given for high bp?
That's what my late dad had them for anyway.
I agree with you...a higher dose would make your bp even lower. 46 bpm? That's really low!!
Ds2 in bed with me but seems ok....

Yes, they do give them for high bp generally. I've been put on a cardio-selective one to try and control the tachycardia aspect of my PoTs. My heartrate and bp are getting really low during the night, but the heartrate isn't low enough during the day to stop the tachy. I re-read his letter and it says I need to monitor and report my numbers so he knows how much to titrate the dose up. Bit worried he's still going to want to do that. Next dose up is 2.5 mg. I'm on 1.25 at the moment, so it's double.

Both the consultant and the GP said, when questioned, that it was unlikely to drop my heartrate even into the low 50s, which is odd, as it usually sits around 64 in the day, so I would have thought low 50s was very probable.

I know have labrythitus from my cold

Grr

So the neuro secretary called me back the other day and said that whilst they did have my LP results, she could not, in fact, give them to me and she would chase the neuro to get in touch with me ASAP. I've not heard back as yet. I have an appointment with my GP tomorrow morning to see if she can access the results, or chase neuro for me. Worrying about this is making me even more ill. I am so angry with her for leaving me hanging like this, knowing how anxious I am about my health.

Alice that's shocking. I hope you have some joy with your GP.

Badders

Got through the day but very tired now. One day at a time...

Oh Badders you poor thing. Labrynthitis is dreadful. Don't know if you already know, but Stugeron (available over the counter) is what they gave dh for it and it really helped.

Alice that's totally unacceptable. My mum is having similar problems - her echocardiogram results arrived on her doormat two days before she went on holiday. She was away for just over a week and has been back 10 days - the GP still don't have a copy and the receptionist just shrugged and said it's probably waiting to be scanned. The results weren't good and as yet, nothing has been done towards treatment/care. Similarly, she found out on Tuesday of last week that she fractured her hip (one of the ones that's been replaced) when she had a fall recently. Again the GP has no record of it, so are refusing to increase her pain relief. It's outrageous how they leave people hanging like this.

Kinky glad you survived the day. One day at a time is a great mantra.

I've actually felt quite a bit better today. Have made a conscious effort to eat healthily and include plenty of healthy fats and I do think it's helped a little. Still have the dry mouth, upset stomach and other bits and pieces of side effects going on, but have at least been able to get some housework done.

Alice...I'm so shocked at this. I think if you have the energy you should complain to the practice manager.
I got some stemetil from the Dr which I'm hoping works. Felt quite weird at work today
She thinks I have fluid behind my ear drum?
I had this many years ago and iirc the tablets sorted it.
I am just hanging on for end of term nextvweek!! 2 weeks with nowhere to go and nothing to do!
Meeting at work tomorrow. I could cry

Moose...am also disgusted at your mums treatment too.

That's so odd, Badders. I'm trying things for fluid trapped behind the eardrum too. If this doesn't work, ENT referral. Another fun thing in the list of fun things.

BTW - remember PALS - patient advice and liason service that every hospital should have. They help mitigate complaints. They're usually very effective.

www.nhs.uk/chq/pages/1082.aspx?CategoryID=68

My appointment is next week, not today. What a twat!

Another week of worrying then

And I got an appointment through for neuro next Wednesday. So pissed off she hasn't called.

Would you consider contacting PALS Alice. I think consultants that are dealing with illness every day of the week reach a point of forgetting we are human beings. There's no way they should leave people worrying about test results. Maybe your neuro needs a kick up the bum reminder?

I am still failing to get a 5 minute stand done without my monitor throwing up errors and me feeling like I can barely hold it together. I'm now clipping my oximeter to the other hand and last night's two-hours post pill stand test had me at 140 bpm b three and a half minutes. I came so close to fainting that my vision completely went and dh had very kindly left the room just as I started to stand. Haven't a clue whether my bp is dropping too low to read or the error is just down to the trembling. Another test tonight, then will email the results to my consultant in the morning (I'm in no fit state to go on my laptop after a stand test) and see what he thinks.