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)

Alice

I went to the optimum health clinic. Its a private treatment clinic, so not cheap but was very helpful for me. They have a foundation for research into cfs/me. It's functional medicine so run by Dr's and naturopaths and nutritionists etc.

I was wondering about a clinic too. All my GP has said is too get more sleep. Although they have officially diagnosed me with cfs and its on my records. There's been no other help except when I got upset once and they suggested anti depressants. I'm not depressed! I'm frustrated that being so ill that I'm housebound isn't being taken seriously.

So I'd be interested in what it is an occupational therapist would do or what other treatment is available privately if needs be.

Am also interested about clinics. Whilst my GP is excellent their modus operandi is to give me medication for pain - the strength of which scares me - and nothing else.

I was referred to a Pain Clinic but they, again, could do nothing for the actual condition.

It sucks there is so little research into the condition, and we are being told things as "you cannot donate blood" due to some random scaremongering a few years ago, probably the same for organ donation too. Something needs to give, with modern living stress levels rising more and more people are becoming afflicted by these chronic conditions. With the modern research into pain receptors and what "pain" actually IS I feel will help our condition be more believed, but like all things takes time.

I'm also going to ask my GP to test me for SLE (Lupus) next week, the symptoms are frighteningly similar..

Fell off the thread, so just signing back in. Still not back at work, even the GP said I should just quit as the job is 'not compatible with my condition' :(

Anyway, this year has got off to a decent start all things considered, that said I'm in full 'painsomnia' mode tonight!

Can't remember if I said before, GP also confirmed recently that fibromyalgia was on my notes as a diagnosis, for a couple of years apparently. Had no idea until it came up recently.

Hugs, spoons etc to all x

Take care, especially if you are sent for graded exercise - it makes many people a LOT worse, especially if they push themselves. The thing that has helped me the most is to pace myself, and to keep my heart rate low. This morning I had to go upstairs three times, and I've been like a dishrag since.

Heart rate is such a difficult one. Mine races from doing nothing sometimes.

It's stopped me from getting angry or worked up about anything though as I nearly pass out so I suppose that's a good thing. 🙄

I've had a couple of ectopic beats lately. Do you think it's worth telling the GP? My list of symptoms is ridiculously long so I'm concerned they'll think I'm a hypochondriac. I've already had a lying down heart test thing (- sorry I can't think of the right name for it at the moment. I do know it but it's vanished from my head.).

Ecg.

There's been no other help except when I got upset once and they suggested anti depressants. I'm not depressed!

Wagglebees ad's are quite often prescribed for me/cfs/fm. It's not specifically for their antidepressant properties but other therapuetic effects. They can make a difference for some people, but don't work for everyone. It may be worth a go if it is something you haven't tried yet. There's an interesting article here.

Apologies if you already knew that :)

Velvet Thank you I did already know about that. The reason the dr suggested them though was because I got tearful. She definitely thought depression was the cause of me/cfs and I'm not depressed so it was that assumption that I objected to. But I can see that they would work for others.

Wagglebees similar happened to me - I was not depressed, but could barely stand or walk. I got sent to a psychiatrist who tried to put my keeling over (fainting) down to panic attacks ( I refused the diagnosis) - which I knew for certain was not the case because it was when I stood up too long or tried to move fast (running after ds). I have fainted (or half fainted) all my adult life so am very familiar with the symptoms of fainting. The following appointment the lift was out of action, and they saw a very ill person who had struggled to get up the stairs (half flight) and was too breathless to talk, so I was sent back to my GP and then on to respiratory and cardiology- eventually. I did get a bit down once sent to the Psych! Recognising I had POTs was very helpful in getting more aware of how to manage my symptoms, and I am very much better all round now.
I should have said the local CFS/pain clinic work as a team - with specialist nurse OT Psychologist and physio. I got assigned the OT - I think they all do similar in trying to establish a clear history and symptoms and then help with pacing, and adjusting your life. I also attended a course on mindfulness - which I know others have found helpful but although I enjoyed meeting up with others in similar situations, it was probably not for me. Fun though- and helpful for my back pain. I could not do the mindfulness sitting- as I felt horrid - the POTs again.
Thank you CFSKate (was it Kate?) for the papers on POTS and the effects of low blood volume- and the fatigue that follows a faint or half faint. It makes so much sense. I know from long experience that you do feel weak and fatigued for a while after a full faint ( used to faint most morning as a young adult). I know that feeling of not being able to stand and wait. Now I jiggle my feet and clench my bum as I have been taught to do to cope with waiting. It must look a bit rude I suppose. Although I think I have always (since adolescence) had a degree of POTs, it became suddenly much worse when I was very ill in hospital with a severe pneumonia. Specifically when I returned from a procedure ( Lung biopsy by bronchoscopy)- I suddenly found I could not stay upright ( and of course I had to sit up because of a lung haemorrhage and general soggy lungs - I felt much better laying down) . The above discussion about anti-muscarinics and autonomic drugs makes me wonder if it was not the pneumonia that escalated my POTs but perhaps a drug I had been given for the procedure or subsequent cardiac arrest ( I never do things by half it seems). I will never know of course, but it has always puzzled me that the heavy fatigue seemed to come on suddenly- and stay despite recovering from the initial illness- and I felt worse than when I had been deemed much more ill.
Fuzzpig nice to 'see' you again, but sorry you are struggling. (Hug)

Yeah, the drug I'm on for POTS is actually also an antidepressant, among other things. What gets me really mad (as it did upthread :) ) is when people see that and assume I have depression, even though I am specificially on it for something else and I know from my gastro appointment it is noted as for that in my notes (as he read off, "I see you're taking bupropion for an autonomic nervous system dysfunction"). It doesn't help that I do have a history of depression. But that is what makes me confident I don't have it now - I know what it is like, and my current life is nothing like that. I'm actually quite enjoying life at the moment - what of it that I am able to experience - and any unhappiness is due to frustration of not being able to do more.

Thanks for all that info about antimuscarinics and related - my brain isn't up to processing it right now, but I will be back to read in more detail when I can.

murmuration I am so with you on knowing I don't have depression precisely because I have had it in the past, so I know how it feels and what I'm like when I have it. I haven't actually had depression since PND after ds2 was born and he'll be twelve in a couple of months, but it's still flagged on my medical notes to show 'depression' as a relevant history for every single referral.

Re the antimuscarinics etc, I tried to go back and re-read the stuff I'd read and was interested in in the morning but not one single word went in and by the time dh got home at 10.30 last night I was completely unable to explain any of it to him. So frustrating.

maggiso I think the other parents at the school think I'm bonkers when I'm waiting for dd in the playground. I jiggle, walk in circles, hop from one foot to the other, clench all manner of muscles etc, I must look so daft. I've learned to time the pick up so I get there just as her class comes out, but if they're late out for any reason I have to do the POTs dance because the alternative is ending up on the floor.

I'm finding myself starting to fret about what the outcome of my diagnosis/appointments is going to be. Dr said Autonomic Dysfunction with POTs and the active stand test, plus history was diagnostic, but I still have the TTT to get through and am worried I'll be one of the people that doesn't display their symptoms during the test for some reason.

Also worrying I'm just going to be told to eat more salt, drink more water and buy a reclining cycle (which is not an option in my tiny house) but at the same time being scared of trying any drugs. I already use pacing, drink gallons and don't salt avoid (in fact doc said he felt salt probably wasn't an issue for me anyway) I know how to avoid a faint (most of the time) as I get pre-syncope symptoms and have learned over many years how to organise things so I can get by and work on improving fitness etc when I'm well enough. I don't want to be fobbed off by someone just telling me what I already know.

I'm not going to get extensive autonomic testing because of the outpatient cap on dh's company health insurance. I could go back to my gp with my diagnosis and ask to go for it via the NHS, but realistically there's nothing in my area, which means a long-distance referral and silly length waiting lists.

I really need to find someway of improving my symptoms as it's starting to affect my marriage very badly. The diagnosis was a relief for me, as I already knew and had accepted my future with the condition, but dh seems to have handled it really badly, it's as if as long as he could still partly believe it was just me making a fuss/hypochondriac/wimp/lazy/depressed etc (even though he swears he didn't think like that) he could hope things would get better, but being told what it is by a specialist in the area and that it's lifelong, esp having had it since childhood, makes it too much to cope with, as there's no hope of me ever 'pulling myself together'. We have had some awful rows this week to the point of almost splitting up (been together 28 years, married for 23) and the stress is pushing me further and further into a really bad crash.

Sorry for the pity post. Just feeling it today, iykwim.

Oops, sorry for the long post. I realise most of us struggle with reading longer posts - just ended up on a bit of a brain dump/rant there. Sorry.

moose, it's sounds like you're doing a lot of POTS management already, but I thought I'd share what's helped for me. Really a big thing is that when possible I try to be as horizontal as I can. So, for example, instead of sitting or even reclining on the couch to watch TV, surf the internet, or read, I actually lie down with just my head elevated as necessary to whatever. If I'm sitting in a chair, I try to get my feet up as close to knee height as possible - I'll often eat breakfast with my feet on DH's chair (as he wakes up later so it's just me and DD at the table). If I'm feeling really bad I'll tell DH I need to eat lying down at dinner and will eat on the couch. It seems small, because it doesn't feel very different to recline vs lie down, but I find that I can get through weeks much better if I've laid down. I started this last year, and it really has improved my ability to do my job, such that I went from dropping the ball horribly despairing I would have to do something drastic to only just slowly falling behind and feeling on-the-edge (I'm probably not really up to full time work, but don't have much choice at the moment).

There's also the movement thing you've mentioned. I found that car rides used to be exhausting for me, and I try to remember to jiggle my knees and feet occasionally, which helps a lot. I actually tend to do smaller type movements, for example, clenching toes in my shoes, shifting weight from one foot to another. It's not particularly obvious to those around. I wonder if you're maybe tiring yourself out, and might be able to get the same circulation-enducing effect with subtler movements? Of course, you know yourself best and may have already calibrated this, but I just thought it might be worth saying something in case not.

I actually have a fairly low-salt diet and have been trying to move it into Western norms, at least, but it is hard! I'm not willing to go high-salt until someone actually tells me to, as that doesn't seem the best plan without medical advice. I'm worried that a TTT won't work for me due to my medication, which really does fix the heart rate issue for the most part, but I can barely function without it. I would have to book a month off work to get off and back on the meds, and I'm not even sure if that is possible. Since my medication is basically unknown in the UK (prescribed in US, I get it off-license here), I'm also not sure they'll even be able to evaluate whether it would affect the test or not. Although that's all academic as I don't have any such things scheduled, anyway!

Thanks murmuration.

I worry about deconditioning and avoid lying down too much, if I can, because of that - even though I know it's daft. I think I also resist lying down as I hate having no choice on bad days - again, I do know this is stupid. My standard position is to kind of recline on the sofa, feet up and arm of the sofa and a big cushion for support.

I have real problems being a passenger in cars. Motorways are ok-ish, but country roads destroy me. In fact I have had some of my worst POTs attacks/episodes driving down country lanes. I totally freaked my mum out by slumping, slurring, then passing out when we were going out to lunch a couple of months back - she was all ready to drive me to A&E and I had to reassure her I wasn't having a stroke. Dh is used to it. Oddly it doesn't happen when I'm driving (currently learning to drive) although there are times I definitely wouldn't be able to drive due to brain fog and exhaustion. I haven't a clue why it affects me so badly as a passenger but not a driver - the only think I can think of is calf/leg muscle activation. The other time it didn't affect me was in our old VW camper, but thinking about that I always had my feet up on a step when we travelled in that.

I hadn't thought of trying smaller movements, my natural impulse is to move my legs as much as possible, but I'll give it a try - thank you. If I can't I do clench and unclench my hands and try to find somewhere to lean. There's a, very uncomfortable, low fence around the grass borders in the school playground and I tend to sit on that if I get really bad. The top bar has been put on so the edge points up, so it's far from comfortable and it's only about a foot and a half tall - but ... any port in a storm. They used to have benches all around the edge of the playground, but thanks to all this 'healthy schools' thing they removed them last year.

I don't eat a lot of salt, but don't avoid either. Doc said he had an inkling salt won't be an issue for me, but I'm doing a 24 hour urine capture to test for it next time I see him anyway. I was surprised, as I think he's thinking my POTs and AD come from probable EDS, as I have hypermobility and probably undiagnosed JHS (my middle son has JHS as does my mother) - I thought the salt thing related more to that type of POTs than others, but I can't remember why I think that.

I'm much better at driving as well; I'm pretty sure it's due to the physical movement involved (hate driving and don't have a UK license, but I used to drive in the States - New Year's Resolution is to get myself a UK license).

I wouldn't worry about deconditioning if you also get up and do activity at other times. I think about it like trying to get the most possible rest out of my rest. So I try to be either as horizontal as possible or moving, and as little as possible in between - as it feels like rest to my mind, but apparently not to my body, and leads to feeling guilty about how tired I can be yet I had so much rest!

That's good advice. I do try to pace carefully, interspersing jobs/necessary movement with rest periods - it's the only way I ever get anything done. I spent years getting it so wrong, trying to do everything before I crashed and ending up so ill as a result. That's basically what caused me to have to give up working.

It was a revelation when I realised doing specific tasks, interspersed with rest meant I actually got more done.

I passed the theory part of my uk driving licence last week and there's a three month wait for the practical driving test in my area, so still plenty of time to practise. The first few driving lessons left me really debilitated each week, just as a result of my stress levels, as I'd been putting it off for years and was sooo nervous. Now my lessons feel like an hour of freedom and I really relax and enjoy them. Although I have had to cancel quite a few when I haven't been well enough.

I'm slightly concerned I may have to stop driving and inform the DVSA of my diagnosis when it's all finalised. Pretty sure they'll approve me for driving anyway as not only do I not pass out when driving, but I get early pre-syncope symptoms so can always predict what's coming. I will be so fed up if I pass my test only to have to wait weeks for their decision though.

I've never driven, I don't think I'd manage can't afford to learn ATM anyway so it's a moot point :o

I am so flipping sore today, the walk to my pupil's house loosened my joints up a bit so that helped but I'm really aching. I've still got another pupil this evening and I should be tidying up more!

I've run out of my amitriptyline. My own fault. Kind of tempted to take an antihistamine at night instead until my prescription comes in... might help me sleep right?

I can't drive any more, and it has been one of the most frustrating consequences of this illness.

I used to love driving and would quite happily drive 100s of miles, but now my arms and back ache really badly even on short journeys, my vision goes blurry, and of course there's the fog. I've had some scary moments, completely forgetting where i was, and forgetting how to actually drive - couldn't remember which pedal was which, what side of the road to drive on - stuff like that!

I live rurally and it is incredibly isolating and restrictive. I really hate not being able to drive more than i hated having to give up work, the financial consequences or anything else - it completely symbolises the loss of my independence and i utterly resent it. I haven't given up hope of being well enough to get it back again though :).

Hi, new to this thread, but not new to ME - am now in my 9th year.

Forgive me, I have just scimmed the posts on this page and keep seeing depression and gp being mentioned in the same sentence. Please tell me doctors have moved on from that old thing? I too, when first diagnosed with PVFS in 2007 had to firmly tell my GP that no I am not depressed - went on a course of anti'ds to appease him ... And proved him wrong. I had hoped with all the research that GP's are a bit more educated, but I guess they have to cover the easier to treat stuff first which can mimic the symptoms of ME.

I had to give up work for 5yrs because of this illness, but fortunately now work from home. We own our own business so I can work as and when I feel well enough. Must admit emotionally I feel much better feeling part of something than I did in those 5yrs. I still have good and bad days, yesterday was particularly bad I didn't even have the energy to speak on the phone to my Mum :-( but today is an ok day, so all good :-) even managed to do some work so doubly happy!

Sadly, as frustrating as it is (and there are days when I get so fed up and frustrated with this illness as I just want to get better that I burst into tears) there is no cure at the moment. Action for ME and Association for ME are researching at Newcastle university, but I do not think a cure is in sight, oh how I wish!

So we are left managing the best we can. A friend has just been diagnosed and oh how I wish I had someone to talk to who had experience when I was first diagnosed, it was flipping scary! But everyone's journey is different and everyone handles this illness differently - we do what's best for us I guess.

So what has worked for me?
Well I use a stick when walking short distances and a mobility scooter for longer distances. Have done since my early 30's, I'm not proud and couldn't give a flying fcuk what others think when they see me out.

I pace everything, each day's activities, the weeks activities etc and manage my rest accordingly. For example I have two funerals to go to next week, so I won't be doing much work as I will need to rest to prevent a relapse.

I take medications to combat the symptoms (take eight different ones, happy to divulge if you think they may help you? - just didn't want to bore you ;-) ) - from nausea to pain to dizziness.

But most of all I stay positive, we are what we think we are and I will not think my self as a sick person, otherwise I will feel worse. The mind is a powerful thing, takes a lot of strength and soul searching on my bad days though, I'm not super human.

Yes I have ME, but ME is not me.

So for those who are struggling there is always a bright side - mine is having the excuse to sit on my bum and do nothing as I'm pacing ;-)

I'm glad someone else has posted about POTS and Autonomic Dysfunction.

The GP who said that POTS was rare is not correct. A definitive piece of research published about 18 months ago indicated that up to 40% of CFS patients have POTS.

I will root it out tomorrow and post the link here.

Having been diagnosed myself, and it explaining so many symptoms that had long baffled me, I would urge anyone with CFS to get tested.

Also it's really worth going to a good CFS unit - I can recommend the CFS unit at Kings 's College Hospital, London.

Or a CFS specialist.

Badgers I've PM'd you with a recommendation for a POTS/AD specialist.

He's head of the Autonomic Unit at St Mary's Paddington, if you're in London.

Unfortunately, he doesn't do NHS work any more. I don't have health insurance so it had to come out of my savings, but it was worth every penny.

*Badders not Badgers!

One final thing. I've had AF and SVT.

Been told it's not part of POTS. However, I'm nigh certain that the jiggery pokery comes from my nervous system rather than the heart muscle itself.