CFS/ME/Fibro/spoony support thread 2

[LivingInMidnight]

Old thread here

Thanks

I know I get stressy but until I was ill I was quite fit & no-one knows what causes it

Can totally understand Katy. I'd be likewise if it was one of my DC. Is there a genetic link with CFS/ME?

That's the problem; genetic link? no one knows, virus? no one knows Autoimmune? no one knows

1 person gets over it, another gets worse, some are ill for 2-3 yrs others for a lifetime

Is depression a cause or a symptom, is IBS connected? A huge proportion of people with CFS/ME/FM have thyroid levels just a tiny bit low (or with the range but at the low end) Vitamin D might be a factor or B12 or even folate

But no-one knows

Hello all

I've been thinking about posting again for a while, but am so rough at the moment and it seemed like too much effort to explain what's been going on.

Short version is, 3 months after being prescribed Ivabradine by my cardio/electrophysiologist I still don't have my prescription. Caused by a combination of hospital admin incompetence for failing to send the accompanying paperwork for shared care and then a GP that refused to prescribe because it's off-licence, even though so was the damned beta-blocker - there are no on-licence meds for pots.

Things have moved on a little with mum. She now knows her mitral valve has prolapsed and that's definitely what caused her atrial and aortic dilation. She's been told she has to be genetically tested/counselled for EDS and that if she is positive, the rest of us will be tested as well, but everyone she sees (ie rheums, cardio and GP) is saying someone else has to make that referral and it keeps going round in circles.

In the meantime my echo came back as normal for both structure and function, which is good news - for a change.

So sorry to see there are so many new posters.

Katy I can totally understand why you are worried about your dd. I would be the same. Sorry I can't be more helpful, but the blood results you listed aren't ones I know anything about. Hope you get some answers for her soon.

Report from June 2016 London ME conference

MidMay - lots about neurological symptoms here

www.meaction.net/2016/05/11/fluge-and-mellas-search-for-genetic-markers/

Thanks for the link Kate. I'll take a look.

Had my MRI results yesterday which confirmed I don't have MS which a big relief.

Having other tests done as neuro wants to fully investigate my symptoms and rule other stuff out which is a good thing.

Fatigue has been getting slightly better but I'm doing little other than resting at home most of the time.

I've asked GP for physio referral in meantime as worried I'm going to start wasting away as my walking is still very poor

Midmay - I think it's made it real to DH although he's always going on about the amount of tablets I take. I feel like I've had fibro for years, years of telling the doctor I'm achey and tired all the time, blood tests all back normal given antidepressants!

Moosemama - you poor thing what a nightmare your having

My SIL has just asked me if I've looked at alternative therapies as painkillers are toxins!!! She's heavily into juice master and things like yoga retreats.

sweetkitty people will always be saying stuff like that now! I think I've mentioned before that someone bought me 'magic' footpads. I know it's well meaning but tbh I find it a bit upsetting.

I've been feeling a bit down so not posted much. I have chased up my neurology appointment though so that's something.

I forgot I named changed at some point

Hi Living, sorry to hear you've been so down. Me too.

sweetkitty sorry to hear about your diagnoses, but better to know what you're dealing with. Hope they can come up with something to help with your pelvis.

I find the well meaning 'health advice' from people upsetting sometimes too, but try to put it to the back of my mind as much as possible, as generally their intention is good, they just have no idea what it feels like to be me.

I missed a call from the hospital today. I am home all day every flipping day, but I was in the toilet for all of about two minutes and that's when they decided to call. They didn't leave a message, despite getting through to my answer machine, so I called the switchboard back, as I thought the number that called was appointments. The lovely lady in appointments checked for me and they hadn't called, nor were they needing to contact me. So, I can only assume it was either my cardiologist or his secretary.

Unfortunately they didn't call back, so I am none the wiser and a bit confused, seeing as my GP got her secretary to call yesterday and book a appointment with me next Monday to discuss my prescription.

I'm guessing if she was going to finally go ahead and prescribe, she'd just have asked the secretary to call and ask me to pick up my prescription. So, current best guess is she's going to tell me she won't prescribe and to expect to hear from my consultant. I suspect the cardiologist or his secretary has probably tried to reach me today to tell me I need to go all the way to the hospital to pick up my prescription. Great for someone that can neither drive, nor stand in a queue for the bus.

Honestly, this has been a 3 months long farce and is doing nothing to help my mood, especially as I've been really unwell for most of that and am currently extremely symptomatic and struggling to even manage getting dd across the road to school and back every day.

Thanks moose it's rubbish isn't it.

I don't get why it's so hard for consultants and GPs to actually talk to each other directly. Maybe the cardiologist is going to prescribe it directly? Or the GP wants to tell you about side effects? It really shouldn't be this much of a struggle to get treatment!

That's the really ridiculous thing. GP said she wouldn't prescribe, but when pressed said she would have to speak to the district pharmacist, as it was off-licence. Told me to call back on Friday and she'd have sorted it, as the pharmacist was due in on Wednesday.

I called Thursday, knowing I would most likely have to chase and found the GP was off from Wednesday until the following Monday and the pharmacist was in on the day I called, so the GP couldn't speak to them!

Fortunately a lovely secretary took pity on me and went to speak to the pharmacist while I was on the phone. She came back and basically said the pharmacist didn't know what all the fuss was about and the GP should just have called the cardiologist direct and spoken to him. So it could all have been sorted with one simple phonecall, not 3 months of me chasing and going without the meds.

Cardiologist has already discussed side-effects, importance or reporting any bradycardia or a hr below 50 bmp immediately, etc with me. It was supposed to be being done by shared care, but first the paperwork was missing and the GP only received the consultant's letter, then the hospital failed to respond to a request for it, then the paperwork they eventually did send stated it was to be used for heart failure or angina.

I suspect the GP has forced the cardiologist to prescribe it himself. Which means a trip to the hospital at least every month, if not every fortnight (if things are still like they were when I was on Topiramate, as consultants in our trust weren't permitted to prescribe for longer than 2 weeks at a time).

All they had to do was speak to each other over the phone 3 months ago and none of this needed to have happened. It's one of those situations where everyone seems to forget there's an ill patient at the centre of all this.

Moosemama - what a saga!! Poor you all you want is medicine to make you feel better on your behalf.

According to my friends all I need to eat is a nice steak and all my problems will disappear! If only!

Feeling very very tired today almost drugged have started a thread about pregabalin side effects

Oh yes, the well meaning 'lifestyle' advice. I've only been really unwell for a short period (DH tells me much of it is down to my under activity ). If only I could have done something about that, what with working 3x12 hr shifts a week (nights and days combined), 2 hours commuting, organising DC, running the home and being prevalent to fatigue and weakness (possibly having had mild CFS all this time after initial illness in the 1990s).

I think its difficult for friends and loved ones to understand really and I see it as an attempt to help, but it does undermine how you feel too and you seem to have to make excuses for yourself.

At the moment my DF are rallying around me to get me out for a few drinks. Little do they know the effort this will take and the fact that 1) with the meds I am due to start I shouldn't drink and 2) I don't even fancy alcohol in the slightest. Oh well, I guess I'll end up designated driver then!

Moosemama Goodness me, if ever there was a case of breakdown of communication between HCP….. Hope its all getting sorted for you now though. What is your diagnosis by the way? Sorry I did read the thread in stages a few weeks ago but can't recall everyone's situation.

In terms of me, after having had a few better days, I had an awful night. Kept waking up suddenly with a racing heart beat, sweaty and panicky, with pains in my head (feels like its burning inside). Feeling really rubbish this morning. Probably all the excitement from seeing the neuro…..

midmay

Yes because we really love taking a tonne of toxic medication just to function and feel sick/dizzy/tired beyond belief/constant pain

I wake up in the morning and lie in bed thinking oh great another day in pain! Simple things really hurt like wiping myself after the toilet and putting on my underwear real struggles.

Rainy day here today so I'll not be doing that much, plan to start ordering the DCs school uniform for next year, we finish up on the 29th of June and I have my eldest DD leaving for high school (sob)

for you Sweetkitty

My DD going up to senior school too come Sept (though DS already there). Good idea about getting uniform sorted - things like that usually take an age now for me whereas I was Mrs Efficient before.

You finish up early for the end of term, we aren't til a month later which is very probably a good thing!

for you Sweetkitty

My DD going up to senior school too come Sept (though DS already there). Good idea about getting uniform sorted - things like that usually take an age now for me whereas I was Mrs Efficient before.

You finish up early for the end of term, we aren't til a month later which is very probably a good thing!

Ohh not sure how I managed that twice!!

By coincidence, I have just ordered next year's uniform for my 3 this morning as well. Funny how we're all so used to having to pace ourselves and avoid rushing/panic that we all know to get it done really early. I also wanted to get some bits from BHS before they disappear completely. Their uniform items have always been really good quality and tend to be cheaper than a lot of places, especially if you can get it in a sale.

My other tip is to order a Startrite foot measure/gauge, as it means you can completely avoid shoe shopping as well.

MidMay I have autonomic dysfunction with pots, plus complex regional pain syndrome and chronic migraine. I am also hypermobile and have been told probably have EDS. We're just waiting on my dm's genetic testing for EDS and if she's positive myself, my siblings and all my dcs will be tested. Ds1 has joint hypermobility syndrome, so we already know he's at least Type III.

I meant to post yesterday and suggest you look into autonomic dysfunction/dysautonomia. This is a good place to start Dinet.org. I basically had to do a lot of research, work it out myself, then get an oximeter to check my heart rate for pots, then take it to the GP for a referral. I actually went private for the diagnosis, as dh's new job had insurance, but am now back in the NHS system as it only covered initial diagnosis.

I was under neurology for over a decade, with a plethora of bizarre symptoms which led to repeated tests, including the full gamut for MS and multiple MRIs, but no answers. I also have odd nocturnal episodes that no-one could explain, but are almost definitely autonomic in origin. I have joined the Dinet forum and some lovely people on there are helping me untangle what is actually happening when they occur. I really need to push for a sleep study though, as they're robbing me of any chance of even just a little quality of life, because I am so rough the day after - sometimes days after, they happen.

Have you checked your seated, lying and standing heart rate at all? The panicky, sweaty night wakings sound pretty autonomic and adrenaline issues are common with pots. If your heart rate rises 30 bpm and stays up for 10 minutes you have pots, which is a big red flag for other autonomic issues.

Midmay - I'm in Scotland hence the early finish. We go back on the 17th August. Scary thing is I start my course on the 15th.

Moose thank you for that information, I'll check it out. Sounds as though you've really been through the mill. Hoping you get some more answers soon re the EDS. I'd not heard of this prior to caring for a woman with it in my job a couple of months ago. I'll also check out my HR over next few days too.

Kitty what course are you starting? Sounds exciting.

Post grad teacher training have wanted to do it for years now I have a place and now I have fibro

I really hope you manage to find a way Kitty, where there's a will and all that…. I retrained for a new career, qualified, a year in and now this. Its all rather frustrating.