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)

Wow Moose, we sound very similiar! When I went for the lumbar puncture, I asked the dr doing it about my MRI scan as I wasn't really given any info, the Dr said the lesions are numerous and all over the white matter of brain. The radiologist had reported "no entirely typical for small vessel disease, not entirely typical for demyelinating disease" I am 46. I don't suffer from migraine. After the LP I was expecting an appointment with the neurologist to discuss everything but all I received was a letter stating LP and VEPs normal and I dont need to be seen and does not suggest MS. I felt rather abandoned with no idea what is wrong with me. I spoke to my GP who felt it was not small vessel disease because of my age.

The only thing that Drs have come up with for what is wrong with me is fibro, even though I don't suffer greatly with pain at all, it is mostly fatigue, tingling, numbness, double vision, blurred vision, flickering vision, dizziness, pins and needles.

Hmm my next neuro appointment was due in December and I've still not had a letter through. Wonder if I've been abandoned. They were talking about dopa responsive dystonia being possible but I can't see that being the case (I'm too old!). The neuro was the least personable dr I've ever met and I get really anxious so my last appointment did not go well .

Hyacinth your report sounds very similar to mine, not typical, but possible for both small vessel or demyelinating. I am also 46 in a couple of months and this has been going on for over 13 years that I can remember.

I didn't get an appointment to discuss my LP either, just a letter to say it was normal, same for EPs and VEPs, but they kept me on 6 month review, which dropped to 12 month review a couple of weeks before I had my big blackouts. I was then bounced back to neuro instead of being sent to the first seizure clinic and that's how I ended up with the crap locum, when my neuro was on maternity leave.

Your symptoms sound so similar to mine. I do have pain, but not to the extent others have on here (excluding the foot I developed Complex Regional Pain in after an accident, which feels like it's on fire a lot of the time). CRPS is a problem with the sympathetic nervous system - the same system that goes haywire with autonomic dysfunction, causing pins and needles, tingling and all sorts of other fun symptoms.

Have you checked your heart rate? Any chance you could have pots? My diagnosis was Dysautonomia/Autonomic Dysfunction with pots and the consultant reckons all the weird symptoms are basically down to my wacky nervous system, which makes sense.

I ended up at the eye A&E when my GP panicked while I had a blinding headache with eye pain and loss of peripheral vision a few years back. I think he thought acute Glaucoma, but they gave my eyes a thorough check and said they couldn't see anything, so referred me back to neurology, as my visual field was distorted and obscured with no obvious cause. Since then they've checked my optic nerve on an MRI and it was ok. Also had an MRI of the neck that didn't throw up anything new.

Do have a read about Autonomic Dysfunction/Dysautonomia, as it does explain a lot of our symptoms. My consultant told me to stay away from Google, but that this website is an exception and a good source of info.

Living when my mil found she really couldn't get on with her neuro she went to PALs and asked them to help her get transferred to a different one. They helped and she was transferred to my old, decent, neuro. Might be worth asking to change if you really can't deal with him.

I've finally managed to get an appointment for my GP next week to discuss my cardiology appointment and pick up my prescription for Ivabradine. Unfortunately it seems her rotation at our surgery is about to finish, so the receptionists suggested I should start building a relationship with one of the permanent doctors so they can work with my cardiologist on this shared care pathway thing. I don't know which GP to pick - and there are some I absolutely wouldn't want to work with.

Thank you for the link Moose that looks a very interesting website. I dont think i have Pots but do have sinus tachycardia and coronary artery spasm, controlled with medication. I also have Ibs and am always freezing. I think the dysautomnia makes a lot of sense.

Thanks moosemama will keep that in mind! If I could just get less worked up about medical appointments it would solve so many problems! I have a review with my GP tomorrow .

How many GPs do you have to pick from? Maybe your current GP will be able to suggest one?

Living, i am just the same, i get really nervous now before appointments, i had to go to Drs yesterday, she had to take my blood pressure twice as it is always high when i go and i have to force myself to relax to get it to come down! The last time i went to the cardiologist it was so high i had a 24 hour monitor fitted there and then! But it was fine when i was at home. I just get really stressed now

Hyacinth, yes my BP does that too! I bought my own monitor so I can tell them what my normal readings are . I should probably try and find it tonight!

I didn't used to be so nervous, maybe it's just the endless appointments we end up with?

No problem Hyacinth.

I think lots of us are the same about medical appointments. It comes from not being believed and being treated so dismissively over the years. I am exactly the same, so is my mum. I had no idea I had low-normal blood pressure until I bought my own monitor, because I get white coat hypertension that pushes it up at drs appointments.

We have four main GPs, plus three part timers. Out of those, two I wouldn't agree to see, following bad experiences with both (not just me, other people have had similar experiences) and one you can't get an appointment with to save your life - if you'll excuse the pun.

The head of practice is good, I get on well with him and he's very straight talking, so no head-games to worry about. He has listened to me in the past regarding concerns about my dcs and even though what I was asking was a long-shot, he agreed to test anyway. His bedside manner leaves a lot to be desired sometimes and he can be a bit gruff, but he's a good doctor and I have a lot of respect for him. I don't know why, but my gut reaction is not to go to him with this though.

The other longest-serving GP is very arrogant, rude and dismissive - doesn't listen etc and I have never had an appointment, either for myself or my dcs, with him that I have come out even feeling ok from, let alone happy with. Dh really dislikes him and he's not someone to take against people at all.

That leaves the two lady GPs, one of whom specialises in paediatrics and has been fantastic with anything to do with ds1, who has ASD, but was very cold and detached when I had to see her for myself. The other is ok, but specialises in mental health issues, which makes me wary, what with the medical profession's tendency to blame my type of symptoms on anxiety, depression or something similar. She was also the one that flagged my medical files with postnatal depression from 12 years ago and delved into my reactive depression dating back 16/17 years and flagged that as well, so both things now appear on every single referral I have made.

Unfortunately my favourite dr left last year. None of them really appeal for this to be honest. I think asking the registrar GP for a recommendation may be the only way. She may have already discussed my case with someone there, as there was some question about whether my cardio appointment needed to be fast-tracked when they got my first ECG results and she panicked a bit.

Yes the one who specialises in mental health is a definite no in my opinion. Too risky. It's a bit of a lottery really with GPs.

That sounds a hard choice, moose. It does seem the paediatric specialist or the practice head are the best of the lot? Perhaps ask advice and then make a decision. One idea is if you start with the head and don't get on, you could switch to the paed specialist by saying something like 'I think I'd prefer a woman, actually' without making it seem like you had an issue? (Have no idea if that's something you think about or not).

I've just gotten my own BP monitor! I've been measuring myself all day :) - well, all morning and evening, as I didn't bring it to work. Interesting. I got it on the advice of a doctor friend with POTS who gave some suggestions of what to measure, sort a 'poor man's tilt table' but she said to make sure someone was around in case I fainted, so I don't know when I'll get to that. I can see that when I stand my systole drops (and the diasystole sometimes, but somes it increases) and my HR increases, but I haven't stood 'still' to see if it continues (that's the bit she said someone should be around for). The weird thing I noticed is how fast my HR decreases when I lie down; it's immediate (or rather, the half minute it takes for the machine to read me) and can be as much as 40bpm drop, often with a systole increase and diasystole decrease. I have no idea what's normal!

murmuration make sure you aren't taking your bp less than a full minute apart and no more than three times in a row. Both my consultant and gp told me that - something to do with the way the body reacts which negates the readings.

My consultant had me doing 3 x base sitting or standing readings a couple of minutes apart, then stand and take a reading at 1 minute, then 1 minute on from that. I wasn't to stand any longer at all (mainly because I kept passing out).

My systolic and diastolic go up for the first minute or sometimes two, then drop back to normal. My diastolic shoots up well over 100 to begin with, but then drops off and levels. I asked my cardiologist about this and he said, as it's a spike and not sustained it's not a worry. If your hr is dropping 40 bpm when you lie down from standing, then it must be at least that much higher standing, iyswim. You need a heart increase on standing of 30 bpm, sustained for at least 10 minutes, for a diagnosis. One of the indicators is also how quickly the hr returns to normal once you lie down.

On my tilt table my hr just kept increasing for 20 minutes and my bp went up slightly, stayed there then dropped a little towards the end of the test. They stopped it at 20 minutes, because I was so symptomatic and they had the diagnosis by then anyway.

Thanks, moose, good to know. By how quickly the HR returns, do you mean quick is a sign of POTS or not? As for me it seems instaneous (although perhaps I negated the readings by reading too close, although that wouldn't effect the HR, would it?).

Yes quick is, one of, the signs of pots. I don't know how quickly non potsy people's hrs return to normal once lying down though.

Just found this, which says non potsies should drop by 20 beats a minute after exercising. Mine just drops right back as soon as I lie down, so I can go from 170 to 60/70 in less than a minute or two. I think it's because the demand on the heart is your body's reaction to gravity, rather than sustained muscle/energy requirement, which would take a bit longer to diminish. If you think about it HIIT training can keep your hr raised for hours after a workout, which is why it's so effective.

GP accepted my home BP figures without question but got to have some nerve conduction studies done on my arms . Oh well at least that's my repeat prescriptions sorted for another year.

Glad they accepted your home readings Living.

Sorry you've got to have more tests, but hopefully it will give them a better idea of what's going on for you.

My news for today is that yet another tooth has broken. I now have four broken molars, as a result of shocking dentistry when I was a teenager. None of them are causing any pain, but I know I need to get them fixed before they do start playing up and not only am I terrified of dentists, but I also have the resistance to local anaesthetics, that makes the whole thing worse.

Yeah hope so!

I'm putting off a dentist appointment too. Local anaesthetics don't work well on me (iirc it's fairly normal with HMS), but when I was growing up my mum never let us have them so in comparison it doesn't seem that bad! Don't recommend trying that out though!

My teeth are a disaster too mainly in part to me having a really bad experience at the dentist aged 13 and not going back until late 20s. I have always needed more than average pain relief so am terrified I will feel pain. Now I'm realising it's probably been fibro as well. Funny how all these little things are clicking into place.

Lower/middle back in agony today despite cocodamol

Been playing with my BP monitor some more :)

I managed to measuring lying then standing for 10 minutes (although I'm not sure I wasn't fidgeting - that's hard!) and measured at 5 min intervals. Systole dropped for first standing measurement, then both BP values incrased over the 10 minutes until systole was as before and diasytole ~15 higher. HR went up by 30bpm in initial read, then kept rising (but just a bit, ending only with a 37bpm increase). Then I lay down and it dropped immediately by 41bpm, to below my original lying measurement!

Oh, moose, that sounds terrible. My DH has really bad teeth and is terrified of dentists, too. Although I think by now he's had root canals in most of his molars and had one removed this autumn, so it seems 'problems' are leveling off as there's not much left there!

If your hr increase was 30 beats or more and sustained for 10 minutes then that sounds like pots. A raised diastolic reading compared to your resting reading is another indicator. I get that too.

I have been brave and booked a dentist's appointment. Turns out the guy that did my root canal 8 years ago - and was so patient and good with me being a gibbering wreck - hasn't left the practice as I thought, so I've booked to see him again. Unfortunately there are no appointments until 9th May! I have been chatting to a lovely dentist on mn health though and am going to try an emergency filling kit to cover the sharp edges in the meantime.

I've been really potsy today. Woke up feeling really rough, spinning room and almost fluey. Been struggling with standing up all day - ended up grooming both dogs and doing their teeth, ears and claws because I could do it all sitting on the living room floor and I couldn't think of anything else I could get done if I couldn't stand up. Really thought I was going to pass out waiting for dd to come out this afternoon, it was a close call. Then had to flop on the sofa as soon as we got back. Finally I couldn't stand up at all to cook tea without overheating and seeing stars. I looked like a lobster when dh arrived home.

Haven't a clue why today, but I am so exhausted, can feel it building and think tomorrow may well be worse.

Does anyone else find they look really pale and ill with huge dark circles under their eyes? I have been like this for a few years, I look like Death warmed up, as my mother would say! Just looking at a pic taken of me last year on holiday and I look awful! All my blood tests have been ok, I take a multivitamin and high dose vitamin D but have a lot of food intolerances so my diet is crap. Maybe I need to get out more in the sun?

Yes, one benefit of being too tired to put in my contacts for the last 7 years has been that my glasses obscures the constant dark circles under my eyes.

Taken some more readings, managing to stand for up to 15 minutes at times - most times my HR goes up ~30bpm, but occasionally only 10-15bpm, yet if I stand still it continues to rise until it gets 30-40bpm over the initial lying down reading. I don't think I can do that test too many more times, it makes me feel quite bad. I will send the numbers to my friend soon. The immediate drop on lying down has quite startled me - I may start doing things like checking different postures and see if the 'rules' I've made about what helps me rest best is actually true.

I am pale but I also have rosacea that's persistent so I guess it's less noticeable to people that don't know me well. Do you use an eye cream? It might just be the result of feeling shattered constantly! I used to use a no7 serum that gave you a very light tan, maybe you could try something like that? I think this must be the current version of it.

No, I don't tend to use eye cream or moisturiser. I am very sensitive to most creams, they make my eyes sting and blurry, I can only really use E45 and Simple products but to be honest, i am too tired to bother putting cream on at all most days!