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)

It might be worth finding an eye cream you can put on before you go to sleep. Simple make one.

Hyacinth, yes, I am always pale and 'ill' looking. On bad days recently dh has said I look even paler than usual, almost translucent. I never go anywhere further than the school run without some tinted moisturiser on - although I have recently discovered it's not called that anymore, apparently it's bb cream these days. [old gimmer emoticon]

I actually look healthier when I'm having one of my flushing episodes and if I have a temperature/fever (which is anything above 37.5 for me as I have a very low base temp) people always tell me how well I'm looking. I used to use the Dove gradual tan skin lotion, but I really hate the feel of cream on my skin, so switched to one I only need to use when I'm actually need to look healthy, iyswim.

murmuration you have to stand still to do the active stand test. If you move at all you're pushing your heart-rate up through muscle activation. The test is about what happens when you stand still and gravity takes effect on your circulatory system. If you're getting 30-40 beats increase with standing still, then it sounds like you probably do have pots.

I wouldn't do the test too often. When my consultant had me doing them every two hours I was literally no good for anything else the whole time and am still playing catch up with the housework/chores even now. I am always particularly exhausted after a stand test, but worse if I'm very symptomatic and get pre-syncope symptoms or a faint, then I have no choice but to lie down.

Thanks for the info, moose. Yes the 30-40bpm increase is if I stand still. After about 10-15 minutes I feel so bad I don't want to countinue; this morning my heart-rate intiall rose by 30pm by standing and 10 minutes later after standing still was 20bpm higher (so 50bpm increase overall).

Moving about actually seems to make the heart-rate increase less; not sure what's that about, although I'm thinking the activity I'm doing isn't enough to get my heartrate hugely high! Just walking about feeding the cat, etc.

So I'm guessing this looks like I probably do have POTS? Feel sort of vindicated and like I knew this all along, and also unsure it could actually be true and worried I won't ever get diagnosed. I will make sure to bring the numbers with me to my appointment, although last time round the referral took a good 9 months to go through, and as they've already discharged me once, I have no idea how long it might take this time.

You definitely don't need to stand for 15 minutes. I would faint if I tried that. My consultant told me off for standing longer than 2 when I was on the bisoprolol.

I probably worded my post badly. Moving about activates muscle, which moves your blood more effectively to stop it pooling in your lower limbs, so your heart doesn't have to work as hard to get it up to your brain. If you clench and unclench your fists at the same time that will also help to slow the tachycardia. Walking in circles, going up and down on your toes, crossing and uncrossing your legs and clenching and unclenching both fists ... and buttocks are all counter-manouevres, that are recommended to help alleviate pots symptoms when you have no choice but to stand. I must look demented wandering around the playground in the circles and rocking up and down on my toes while wait for dd sometimes!

When I have walked, slowly, back from the school - a 4 minute walk at normal speed. My heart rate is in the low 180s as I come through the front door and drops to 170-ish as I potter around getting dd a drink and snack, yet when I did my tilt table test it only got to 149 over 20 minutes. I was really worried, as I get that just doing the washing up at home and I assumed it would be higher on a tilt test, but my consultant said it was strong reaction and described my physical symptoms as a violent response, even though I didn't pass out or get full pre-syncope symptoms.

Are you keeping a log of any symptoms you feel when you're standing? That would also be useful info to take to your appointment.

Everything you're feeling is how I felt when I discovered I'd got it and knew I needed to take my results to the GP, who most likely wouldn't have a clue about pots anyway. Who were you referred to last time? Ideally you need a cardiologist that specialises in electrophysiology, so an Electrophysiologist. I was extremely lucky and the guy I ended up seeing after my questionable ECG turned out to not only be an Electrophysiologist, but also have an interest in and several other patients with pots. The changes of that must have been millions to one, I think.

There is a 'fatigue team' at the local hospital; they handle all sorts of things based on the flyers in their waiting room, including Reynaulds, POTS, lupus, and such. My CFS/ME nurse gave me the name of a cardiologist that has diagnosed POTS in several of his patients, and she turned out to be part of the same team. There is a head consultant guy that oversee all of it, so he's the one people get referred to and then see various members of the team. My GP said he was going to ask if I could seen by someone with an interest in POTS.

I have thrown in when I feel lightheaded during the measurements (and once when I lost vision), but not otherwise. Do you think a log of whenever I feel lightheaded or lose vision after standing would be useful?

I was doing 10-15 min based on the diagnostic criteria I found for POTS, indicating it was sustained 30bpm after standing for 10 minutes. I found it curious how I keep increasing - not sure if rising from 10bpm to 30bpm over 10 minutes after standing would count as 'sustained' (although standing still it's not like I'm doing anything else to raise my heartbeat); although sometimes the intial reading is 30bpm increased or almost.

Well it sounds like at least you have a decent nhs service where you are. There is nothing at all in my pct, which is why I was lucky to hit on this electrophysiologist out of the blue.

I would log everything, as even if your GP doesn't need it, it may be helpful for the hospital appointment. I log it all, take it with me, then only produce it if it seems necessary or relevant to the conversation.

Rising from 10 beats to 30 over ten minutes does count. Sustained just means your hr doesn't return to normal or significantly drop while you remain standing.

Some people have sudden high jumps, others are slow climbers, some are both at different times. I am both, although more generally a slow climber and that was true of my tilt table test as well.

You inspired me to do my first active stand test for weeks, as I need a new baseline now I'm clear of the bisoprolol, before I pick up my ivabradine prescription on Monday and have been putting it off.

I didn't really do it properly though, as I didn't settle long enough to get a proper base rate before standing and went from sitting to standing, rather than lying. Today's reading was a sudden jump, went from 86 to 139 in under a minute and my bp monitor threw up an ERR reading at two, so I have no idea what was going on then, as I forgot to clip my oximeter to the other hand. Doh! When I've had errors before, it's been because my diastolic has shot up well over 100 and produced a narrow pulse pressure, as well as my hr shooting up. I asked my cardiologist about it and he said as it's transient it's not damaging, it's only sustained narrow pulse pressure that's a worry. Oddly, I was only minimally symptomatic, whereas logic would expect a stronger reaction with a quicker rise.

My resting hr is usually in the 60s, rather than the 80s.

Yes, pretty good NHS around here - the fatigue team is at a big teaching hospital. It's very close, but not in our trust, which can be annoying as they don't have access to any of my records and, conversely, my GP can't see any of their test results unless they send them, and they tend to just send summary letters (e.g., she's got depression) instead of actual test results.

This time I will be sure to bring all my previous blood test results (once I get up the energy to gather them together and look myself), as last time the first visit seemed to go well, but then they redid all the standard bloods as a 'first step' but the registrar who saw me had apparently already decided I had depression before the appointment and it went no further.

My doctor friend says I definitely have POTS after seeing my record. Probably can't use that as a diagnosis, though, via Facebook! Although I will take my BP/HR record to the appointment too, and maybe do it again for a few days before whenever that comes through, and that may help them.

How's everyone today? My DC are back at school today after the Easter hols. Getting them up was a nightmare cannot cope with arguing before 8am when my meds haven't kicked in. Have had a shower and done a big food shop totally wiped out now😟

I still have one dc at home until tomorrow. He's been given free reign to play computer games and chill out.

It's ds2's birthday today. We had to be up at 6.00 to make sure we had time to do presents and the family tradition of pancakes for breakfast. I woke at 5.00, then stayed awake, as I knew if I went back off to sleep I wouldn't be able to get up. Since then I've walked dd to school, been to the GPs and put away an enormous Tesco grocery delivery. Later we are all going out to dinner at a lovely country pub with both sets of grandparents, which will be very tiring, but at least I won't have to cook.

Unfortunately, my GP appointment didn't go well. First off the paperwork for shared care with my cardiologist is missing, so she couldn't prescribe the ivabradine. Then we started discussing all my rebound symptoms from the bisoprolol and the reflux etc and she said she thought it sounded like I'd got an ulcer that was now healing. She agreed to stay off the omeprazole, because they obviously don't suit me, but advised me to stick with daily ranitidine for a couple of weeks to give it chance to properly settle down and heal.

Finally I asked if the chest pain I've been getting walking up and down to school could be reflux and she got worried, asked lots of questions (like do I also get hot and sweaty and feel shaky - err, yes ... I have pots so those symptoms are my default setting when I'm standing up) and said she was worried that it sounded like angina. She said if I'd had pains at rest too she'd have sent me straight up to the hospital, but as it's only with exertion and it's confusing because my pots symptoms are very similar to cardiac symptoms and angina anyway, she would contact my cardiologist instead to ask his advice and whether or not he wants to see me.

I now have to wait and call the GPs in two weeks to see if the shared care has been set up - unless I hear from them or the cardiologist in the meantime.

I am pretty sure it's all pots/autonomic and has been flared by the sudden bisoprolol withdrawal, as everything else flared as well, including numbness, tingling, temperature control, rashes and itching and the crps in my bad foot. Doesn't make you feel good though, when as you leave your GP's office they say "If you have any pain at all at rest, get yourself to emergency care immediately."

Really hoping I don't get made to go back up to the hospital for tests that show nothing out of the ordinary - again! I have my echocardiogram next week anyway, so I'm hoping they'll just wait for that.

Sounds stressful, moose. It's so hard, isn't it? When you've got chronic problems so much is wrong that things that would be 'danger signals' in a normal person are just everyday occurrences. I'd say kudos to your GP for paying attention and thinking beyond the generic chronic case - I know it's scary, but can you feel reassured that she isn't just putting every problem you have down to your chronic condition and instead following up danger flags like she would in any 'normal' patient?

Good point murmuration it does mean she wasn't making any assumptions and was being following up reported symptoms like she would for someone without pots.

It just came as a bit of a shock when I only went in there to pick up my nonexistent prescription. Especially as only mentioned the chest pain, thinking it was related to the acid problems I've been having.

I think I have just had so many tests run, over so many years that have pretty much all come back negative that I don't want to get stuck back in that loop. Hopefully that won't happen now I'm under a cardiologist that actually knows about pots though.

moose sorry it didn't go well. I can see why you would prefer to keep your GP, she sounds ace.

I have to admit half the reason I avoid appointments is because I seem to be racking up diagnoses.

She is very good. We had a bit of a bumpy start, as I didn't realise my ancient PND had been flagged by another GP on my notes and thought she'd deliberately pulled out the depression references and put them on my referral form, which would have meant she thought my problems were psychological, rather than physical. She was very good and explained it all to me, as well as the fact I can apply to the practice manager to have the flags removed, as they're no longer relevant after so long.

Such a shame she's only on reg rotation. She's going to be a fantastic doctor for whoever is lucky enough to get her.

I came out of the appointment a little stunned and couldn't remember what she'd said I needed to do next. Fortunately, my lovely Mum insisted on going in with me, so she was able to fill in the gaps.

I hate how hopeless and ditsy I seem to become at medical appointments.

I'm the same! I seem to get worse as time goes on

Well, it seems I overdid it yesterday and am now in serious spoon deficit. I was expecting it really

We were only out until 9.30, very quiet meal in a country pub, next to a lovely woodburning stove and in bed by 10.30, but had an awful night, followed by a horrendous episode at 4.30/5.00 ish.

I can't even explain what happened, I was in such a state. All I can remember is the muscle tightenings, tingling, then numbness in my hands and particularly my feet and I somehow managed to record my oximeter readings, which shows my heartrate swinging all over the place from 58 to 80, with the pulse strength going from super strong, to barely readable and lots of missed beats.

I have only just come downstairs, as this morning I couldn't even sit up, let alone get out of bed. My arms and legs are weak and aching, which I think is a result of the muscle tightenings.

Dh had to take dd to school, which is a problem, as his boss is really on his back at the moment as it is and it meant he missed an important meeting. Unfortunately my parents weren't available and she can only go with her friend from school on Wed, Thurs, Fri.

Ended up with a migraine that has now retreated a little, thanks to codeine and the high-strength ibuprofen, but I know is just lying in wait to come back when they wear off. I have been trying not to take ibuprofen with my stomach problems, but know from experience that nothing but the combination of codeine and ibuprofen taken together will touch one of my migraines and I am the only person that can pick dd up this afternoon, so I have to be functioning enough to do that.

I've been getting these episodes for a few years now and they are always worst in the week before my period - which is this week, but this one was particularly nasty. Just did a little reading online and it seems they are pretty common, in similar, but varying forms, in people that have dysautonomia, which is reassuring I suppose.

I have also placed an order for some kefir and sauerkraut, as I've been reading up on it and considering trying it for a while, mainly as it's supposed to help reduce inflammation in the body and I know from my blood tests that I always test high for inflammation, but no-one can ever tell me why. Hoping it might help in some way at least.

Me again, sorry.

Mum has just got back from her rheumatology appointment. They suggested EDS and want her to have a dexa scan and genetic testing, but are writing to her GP to organise it. So mad, she went there to get a referral to a specialist EDS diagnostic service, as she has had lots of joints replaced and has severe arthritis which limits flexibility in others - which means she doesn't meet the normal diagnostic criteria. That means she fulfils the criteria for a specialist referral - but, the referral has to be done by a consultant. They are so crafty, always trying to avoid referring out of area, even if there is no service in area. There are only two UK specialist services fgs.

They also told her 'even if you're diagnosed there's nothing they can do to help you'. That's absolute rubbish as well. Why can't they just admit they know very little about it and refer on to someone that does and can help?

If she has hypermobility type (type III) genetic testing won't prove anything. Although I suspect she has classic type, based on the severity of her problems. Hoping her GP sees sense and asks the consultant to refer onwards.

Hi moose
So sorry you have had frustrating news
What a nightmare!
Well....not much to day here other than dh goes away tomorrow for 10 days and the physio seems to think I may need referring on after my next appt...who to is anyone's guess
No doubt I will be in agony later
Mum not great - she has lost half a stone so she is only 7.5 stone now
Feel rubbish.
Wish I could just have one good day

Badders sounds like you are having a tough time too. 10 days is a long time with no support.

Can your Mum tolerate complan or similar? That's what really helped me build myself back up when I was really ill in my 20s.

Totally identify with wishing for just one good day. I am also gaining weight with all this inactivity, which isn't helping my state of mind at all.

She was on fortisips before - I might ask her if she can get more.
The nurse is going to speak to the dr
She is coeliac but refuses to eat gluten free
So my sympathy levels aren't what they should be sadly
I'm going to use a heat pad tonight as the physio really pummelled me earlier

Ah, my Dad had fortisips, but he really didn't like them.

I should imagine eating gluten is making things a whole lot worse. It goes right through ds if he so much as inhales a crumb or gets cross-contaminated.

I have ds2 sitting on the toilet crying with an upset stomach at the moment. I am seriously suspecting the half a dozen Toxic Waste sweets he ate when he came home from school - birthday present from a friend.

Dh isn't home yet and will most likely have to carry on working when he does get back. He has been put through hell at work today by his boss, just for taking dd to school and is in a right state about it. It's literally once in a blue moon though, as I will usually drag myself up there if I possibly can. Neither of us can remember the last time he took her, it was that long ago. His boss has recently been given more responsibility and has become a huge arse ever since - they used to be good friends, but now he seems hell bent on making dh's life a misery.

Hope the heat pad helps.

Oh that's such a shame.
Power seems to go to some people's head doesn't it?
I can't stand dhs boss. He is a pig. If whenever needs time off he books annual leave.
They gave him half a day for my dad's funeral.

Definitely. This particular guy is just a bully. Only nice to people he thinks may be useful to him. Horrible.

Half a day for his fil's funeral. That's disgraceful.

I have a hot water bottle
I'm in bed
Just had a snuggle with ds1 and am going to try and get some sleep
Promised to take mum to town tomorrow which I'm regretting now

New thread here

hi @maiscout may I ask how you are doing now/if the clinic helped resolve things for you? I'm currently seeking the FMD route