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 mum was also put on bisoprolol moose and had to be taken off it due to the side effects
I have left the house twice since good Friday
Went to a garden centre On Saturday for 2 hours
And took mum to asda today for an hour
I feel so weak
Dh back at work on weds - I'm dreading it

Oh Badders we're a right pair aren't we?

My dh is back to work tomorrow, he has two software releases this week and will be away overnight for a few days at the end of the week. He has at least managed to arrange things so I won't have to go to the big family party on Saturday, but it's my step dad's birthday on Sunday and I will have to go to a party at Mum's for that. At least that's only 10 minutes up the road though and they will understand if I need to go and lie down or leave early.

Just did my 6.00 pm stand test. Managed to actually get a reading this time, but heart-rate still increased over 40 beats up on my resting rate. Can't see any point in being on this evil medicine if it doesn't even do what it's supposed to. My resting heart rate and bp have been lowered slightly and my standing rates are lower than they were, but still have too high an increase. All it's done is shift the whole lot back, but the increase is still the same.

All these stand tests are wearing me out as well. I'd like to see the doctor manage 7 stand tests a day while looking after three dcs, two dogs and a house.

We aren't we?
I love Drs attitude sometimes...
I had whooping cough during a messy miscarriage once (great fun!)
Dh worked away and ds1 was only 3
Dr told me to go home and rest
Hahahahahahaha

Whilst I am moaning about Drs it also never ceases to amaze me the conditions and symtptoms Drs expect us to "put up with"
I know as a dr you must see some really hard stuff but even quite commonplace illnesses can be hard to cope with and unpleasant
I find a lot of Drs very dismissive tbh
The nhs is so chronically underfunded that even important stuff doesn't get done or is very delayed

pissedglitter for the most part doctors seem to just let us carry on on our own after diagnosis. If you've got some particularly problematic joints you could ask to be referred to physio, which might help. For the overall pain though they usually say exercise more and lose weight, which is not particularly helpful when EVERYTHING hurts.

Naproxen does help me, but I only really know this from the times I've stopped taking it briefly because it hurt more. Are you taking it every day?

Amitriptyline tends to be a standard prescription for chronic pain. You could try a higher dose but it is more likely to help the muscle pain etc than the actual joint pain. Sleeping is a bonus though. I'm at 150mg a night now and my doctor won't increase it.

I've not tried baclofen but I use 30/500 cocodamol when the pain is at its worst. Doesn't do a great deal though.

I think I'd ask for a physio referral if I were you and see if it's any help.

Oh and be very careful about what you try. If someone says chiropractor please don't listen, it's the last thing hypermobile joints need!

^the lidocane/local anaesthetic thing is related to connective tissue disorder/EDS, which of course can be related to Fibro^

Thanks moose - i didn't know that. I'm pretty sure i don't have eds - i'm flexible because of yoga (when i can do it, which has been virtually not at all the last year) but certainly not hypermobile. Like you say, there is so much going on it's hard to know what is connected to what. It's like the jaw thing i mentioned - i've seen my gp, dentist and a myofascial surgeon - all knew about my fibro, but none of them thought it could be connected to my fibro until i found out that it could be and then they checked it, and lo, it is a recognised symptom.

I have it too velvet. It's my least favourite symptom and yet weirdly the one they'll fall over themselves to help me with compared with everything else.

The jaw thing I mean brain fog

Have you found anything that helps Midnight? I was given some facial exercises to do, but i can't honestly say they have made much (if any) difference. I find it one of the hardest things to live with too -- it makes my speech sound slurred sometimes which does nothing for one's self confidence, and sometimes i can't open my mouth enough to eat. It's definitely exacerbated by stress and tiredness which, given the sleep disruption, is quite a lot of the time. It causes quite a lot of referred pain too, and i'm sure it contributes to the number of headaches i get.

My 10 year old fainted in the shower last night 'Luckily' she isn't very independent and I was with her and took the brunt of her fall. Of course now with the EDS disganosis for myself, I'm all concerned about the kids and stressing about possible pots. Is there an easy way to self test for this with a bp/hr monitor?

And of course there's also the high possibility that I'm overreacting and paranoid, but she's my baby

velvet it will be contributing to the headaches, if not causing them in the first place! I have the slurring too, especially when I'm tired. The exercises didn't do much for me either.

Memory foam pillow helped a bit with sleep. I sleep on my side so was having trouble getting comfortable.

I've had it since 2003 and I still struggle with it, but it's more manageable now. Occupational health at work helped with some adjustments at work to help with stress, that made a huge difference.

I was really lucky and had a brilliant consultant at the local dental hospital's pain clinic. She tried everything she could think of so I've had a variety of medication, physio, acupuncture, cbt, and a splint made by restorative dentistry to make sure it was perfect. The best thing was Botox, it worked really really well. Unfortunately because I also have hypermobility they were worried about destabilising the joints so I had to stop using it.

I take naproxen and a high dose of amitriptyline (150mg) and those both help.

I was referred to the pain clinic via the Maxillofacial surgeon. Can you ask yours if there's something similar? It's really hard to carry on like normal when your face feels like it's in a vice while someone is drilling into your temple (the only way I can describe it).

alice you could get a cheap finger oximeter that shows heart rate. Check it while laying flat and then when standing.

Oh poor dd, Alice. Good job you were with her.

You're bound to be worried, as you said, she's your baby. There are a lot of bugs around at the moment though, so she could be coming down with one. Alternatively, is there any chance she could be starting to get hormonal?

I discovered I had pots by buying a cheap finger oximeter off Amazon. I got this one in the sale for about a tenner. You get a baseline, resting heartrate, by sitting or lying quietly for 10 minutes or so, then stand and take a reading at 1, 2, 5 and 10 minutes. A sustained rise of over 40 beats per minute in a child is diagnostic. Have a look here.

The alternative is orthostatic hypotension, which would cause a faint when her bp dropped on standing. Not sure if they do home bp monitors for children. I presume they can easily check it at a GP appointment though. Just need to take sitting, then standing readings and see if it drops.

Hi, I haven't posted for a while but have POTs with CFS. I've not caught up completely, so forgive me if I jump in, or repeat myself.
Alice glad MS has been ruled out but sorry EDS is on the cards. Sounds like I am also let off the MS hook too. I've not had a LP - after your experience I am rather glad!I realise I possible had POTs since middle childhood ( beginning of 'growing up'). I only discovered I had POTS when severe illness (pneumonia)) made it much worse - possibly due to deconditioning. I used to faint a lot - especially if I got up too fast in the morning, but my twin was the same so thought it was normal. I don't have EDS but have some hypermobile joints. I have not been formally diagnosed with POTs ( No local tilt table and I could not travel far at the time) but I my cardiologist was pretty certain. I had a 24 hour BP and ECG done ( to rule out other things), and my BP/HR measured on standing from laying down.. I have a O2 sats monitor (oximeter) (for another condition) and like Moosemama this was useful to confirm that my HR jumps up (30++ BPM) on standing - and continues to rise if I stand still. My cardiologist suggested I build up leg muscle strength whilst laying down, (recumberant cycling, pilates bands, swimming) and taught me several manouvers such as jiggling my legs on the spot, or pumping my feet up and down, clenching bum. to get my leg muscles to return my blood upwards, when standing or sitting still. My understanding of POTS is that there are theoretically different types. I think mine might be due to low blood volume ( poor volume control) whilst other types are caused by different underlying problems such as blood vessels being more stretchy, so the manouvers may not help. I guess it would be useful to know what type of POTS you have- but I don't think there is a yet a way of testing.I have always known I need to drink (water!) often or I get unwell. I was told to increase my salt intake and drink water - guess what - more often! I do feel more on top of it now -but still have CFS type symptoms - just not as disabling and more controllable because I rarely faint now.
Moose I am sorry you are going through such a hard time at the moment! The nearly fainting is so horrible and exhausting. The cardiologist wanted me to trial Bblockers but as I have breathing problems I could not - glad I didn't now!
I have some jaw problems too!
How are you Badders?
Who was it trying the chiropractor? I agree its possibly a very bad idea for HMS or EDS people, but I decided on a course - I also have disc troubles and nerve pain. My chiropractor suggested regular - little and often 'adjustments - and two years later I am a lot less unwell - although I am not sure my back is much better! I now am down to attending monthly. I think the theory is that if the spine is not working as it should - all affected spinal nerves and the jobs they perform could be compromised - so getting the spine healthier and moving more as it should - may help lots of other systems. There are not a lot of good trials to support it - so its not approved by NICE but I tried it more out of desperation - along with several other things. Hope it helps for you.

Still feel very rough but thank you for asking!
Funnily enough I bought a pulse oximeter from Amazon too (when ds1 has pneumonia 18 months ago) but my sats are fine (98/99) although my pulse was a bit rapid (110 bpm) this morning
If I still feel as rough by the end of the week I will go to the dr
Had a very brief walk round ikea today (holding onto dh for dear life!) and feel really shattered now
Dh back to work tomorrow
Luckily the sc don't seem to want to do much!

Hi maggiso glad the life adjustments (water/salt etc) and counter manoeuvres are helping you. I had less than a third the amount of sodium I should have had when they did my 24 hr urine capture, so have been told to up my salt intake. I already drink over the recommended amount of water and had developed a habit of doing counter-manoeuvres over the years, just out of need really.

I have honestly never come as close to fainting as regularly as I have since being on beta-blockers, which imo is a clear indicator that they're not the right treatment for me. Just hope my consultant agrees.

I have my cardiology appointment tomorrow. GP booked it after finding I had an irregular heartbeat, then a prolonged QT interval and two other anomalies on an ECG. Since she sent the referral I have been dxd with pots, had another 'normal ECG', been put on beta blockers and been told to ask for an echo because my dm has a dilated aorta which they think is secondary to connective tissue disorder.

I have a feeling the appointment is likely to be yet another waste of time, but I guess if they do decide to at least to an echo that's one less thing to worry about.

I have been reading about how the vagus nerve affects heart rate, since I drank a glass off cold water and knocked by heart rate down to 42 bpm the other day. I knew you could use cold water to reduce tachycardia and that it definitely seem to work for me, but hadn't considered what would happen if I did the same when my heartbeat was already really low - doh!

Also think I've managed to work out that all the error readings I am getting from my bp monitor are most likely down to narrow pulse pressure (top bp reading minus bottom reading). My standing pulse pressure is regularly around 19, but when I've been very symptomatic over Easter it's dropped as low as 10. From what I've read, electronic bp monitors don't like it getting lower than that and that's when they throw up errors. Apparently pulse pressure should be around 40 ish and it's very common for it to be narrow in people who have pots.

I'm trying chiropractic treatment. I do have hypermobile joints but not been diagnosed with EDS or HMS. Physio (Nhs and private) didn't help me at all and after a lot of discussion between DH and I plus with the chiropractor, we decided it was worth a go - I'm not expecting a cure but I have believed for several years (14+ !) that my pelvis isn't 'right' and one of my shoulders is causing issues too and I don't believe either is due to the fibromyalgia. We've agreed a months trial (dh & I) but will take it week by week and I'll stop if I can't cope.

Interestingly the chiro said he had treated 2 people with Fibro (maybe more but only mentioned 2 in direct conversation) and had great success..... meh.. I don't know... I always get suss when money is involved!!!!!!!

Alice what a shock re dd, is she ok now?

Sorry can't remember what everyone else has said.... I hope everyone is coping ok x

It's really not a good idea to get joints manipulated if you suspect that you're hypermobile. You don't want the joints to become more lax. Most chiropractors have no idea how to work with hypermobile joints to begin with.

My voice has gone
My family are very delighted sympathetic

Oh no Badders you poor thing. I hope they are bringing you plenty of warm drinks and perfecting their sign language.

I have been for my cardiology appointment today and for once came away from an NHS appointment happy. Lovely man, extremely helpful and willing to explain everything properly and by chance, was an electrophysiologist, rather than a cardiologist, who just happens to have an interest in pots.

Straight away he said he wants me off the bisoprolol and wants to put me on ivabradine instead. Apparently he's used that with several other pots patients successfully. I am really pleased, as I've read good things about it and only works on the sinus node, so doesn't affect anything but the heart rate, which means less side effects. I have read stories of other people having to wait ages to be allowed to try it or being refused it, so I was gobsmacked when that was the first thing he suggested. Just have to hope it's the right med for me now.

As I suspected all along, he said my blood pressure is normal/healthy and didn't need to be lowered further by beta-blockers, which is probably why I have been feeling so awful on them.

There are anomalies on my ECGs, both the GPs and the one they did today, but he said it's nothing he feels the need to panic about and may just be normal for me.

He was very interested in the EDS/hypermobility link, my Mum's recent echo results and the EDS/pots connection and referred me for an echo, both to check for any anomalies that might explain the weird ECG results and to make sure there's no EDS-type heart issues. He also made a note of my dcs ages to make sure they get checked out as well if necessary.

He's writing to my GP and told me to book an appointment towards the end of next week/beginning of the following week to see her about starting the Ivabradine. I'll be starting at a very low dose and he wants me to try that for 3 months, then he'll see me again and see if it needs titrating.

So, I am going to write to my private consultant tonight and tell him that I am switching my care to a NHS electrophysiologist and ask for a full copy of my file/test results and to cancel the appointment I have for a couple of weeks time, as there's little point in paying for it now.

I'm home again and absolutely wiped-out, but relieved and feel very lucky to have landed the right cardio guy. It really is luck too, as I was due to see a completely different cardiologist a month ago, but had to change my appointment due to dh's work commitments and ended up in this guy's clinic instead.

Oh no badders! Hope your voice is back soon!

Moose that sounds really promising! Hope the new treatment trial goes well!

Had my second Chiro appt today. Am feeling exhausted and in pain but I don't feel quite as overwhelmed as I did with it all last week. We shall see! I spoke to the chiropractor about my hypermobile joints and from what she said plus comments she made relating to my joints that I hadn't told her, I'm willing to keep going for now. I feel I owe it to myself to see if treatment can help my pelvis and shoulders at least a little.

Moose...oh the difference when a hcp listens and tries to help, eh!? :) I'm so pleased for you!
I'm feeling quite rough today tbh, time of the month and all the lovely peri symptoms that go with that too.
And I have a nasty blister on my foot from the bloody orthotic insoles! Grr. And my physio appt has been out back a week so I won't have been seen for 3 weeks by the time I go back.
Moan....moan....moan....:)

daisy that sounds better than last week. If you feel it is helping, then you should definitely keep going.

Badders that's it exactly. It was such a difference from other appointments I've had that I was actually a little bit in shock when I came out.

Dh has just managed to ruin my mood by informing me that he's now going to be away longer over this weekend, which means I will very likely miss my step dad's birthday party, as I can't leave the dogs home while I go with the dcs, even if I could get a lift.