Inappropriate Sinus Tachycardia; Ivabradine one month in. Is it working?

I started on Ivabradine just over a month ago with a slow start of 2.5mg bd (twice a day) and have now increased to the 5mg bd. Is it working? Well, it’s doing something, that’s for sure. But I’m a bit surprised it isn’t doing as much as I expected.

The top red band shows a POTS tacky level ie. above 120 and you can see I don’t often get there now. This is good. However, I do seem to have more bouts of sitting still severe palps over 130 in the evening or in bed at night (not on chart) Nevertheless overall I think my heart rate is down. I’ve even had a few in the 70s. Very nice.

No obvious side effects so far which is good. My breathing is rubbish and I did come off the Ivabradine for a few days to see if it was the culprit but nothing changed other than my HR going up. Having seen the GP I’m back on the Ivabradine and putting up with the breathlessness which a dose of steroids hasn’t helped. Weird, because they usually do.

I have been surprised at the lack of real impact on my resting pulse. It’s down from 110 on average to around 97 but it’s often 100 or over 100 still. So the real impact has been on my upright heart rate which is so much better. I assume the Prof will increase the dose when I get to see him (I think the usual dose is 7.5mg bd).

The GP has adjusted my Candesarten 4mg and 8mg from just 8mg. My BP remains as fluctuating as ever. It’s sometimes great and sometimes high even when I’m sitting still. Moving around sends it upwards very sharply along with sudden drops. Not nice at all. I still think this is orthostatic in nature.

The numbers at the bottom, in purple, are my pulse pressure. As you see it’s rarely in the green. It is generally too high and too often it’s way too high.

I am glad the GP took seriously my report of a TIA last month (about 6 weeks ago) as fluctuating BP along with such high numbers on pp are a bit concerning. Strangely research so far shows that people over 60 can safely cope with PPs as high as 70 but people under 50 don’t do so well. The research is extremely thin on the ground.

From Dys.Girl I am hoping to join the pulse pressure research group. I am pretty sure the wildly fluctuating BP and even tacky levels are because my ANS is bust, but without proper research the “what now?” can’t really be answered.

I am awaiting bloods and of course the wait for standing norepinephrine and dopamine levels. I really want those done because I am still thinking along hyper or comboPOTS lines, especially as my BP is so high when I stand up. I am assuming the bloods I’m having taken next week will cover things like  full blood count, cardiac enzyme and BNP but I’ll have to ask when I get there.

I also think I might  want to get ANAs done in case of Lupus now that I am the less than proud owner of a malar rash. (butterfly rash). It comes and goes and ranges in colour from purple to bright red. As the tests for Lupus are notoriously unreliable I am unsure whether to bother asking for them now. It would only be useful if there was a proper treatment – and I am not so sure there is.

Multicoloured bodily features are continues with red knees and blue feet in the mornings. All very Dulux of me I think. Also keep having Oxygen SaTs below 93 sometimes hovering around 90-91. No wonder I feel a bit off.

Wish it was all simple. But on the other hand, it’s like a detective story sorting through all the clues; even if it is unfortunate that it’s my body doing this.

Some doctors are good.

Anyone who has read my blog over time will know I have an overall, pretty low opinion of doctors (especially neurologists) but there are some good ones out there. My GP is a very good doctor and I respect him a lot for that.

Even so I avoid going even to him if I can avoid it. I phoned for an appointment before Easter and was told there were none until mid april unless it was an emergency and so I didn’t go. Yesterday, I went because by that point I really had to.

The oncall doc was one of the regulars at the group practice I attend. I’ve only met her a couple of times when she tried to help sort out some post c-section problems I had after Heleyna was born.

She didn’t keep me waiting but came out as soon as she had finished with her patient and took me straight through to the nebuliser room. She asked me first what I thought was happening and whether I thought I had an infection. I told her no infection and no full on asthma attack as it was mostly URT wheezing and breathlessness. She had a listen and agreed with me.

She plugged up the machine and left me to it.

I was really taken with the fact she trusted me to know what my own body was up to.

Afterwards she took us through to her room and allowed me time to recover and talk to her. It was because she was allowing the breathless-voicless middle aged biddy to speak that I felt able to tell her the whole truth; first that I’d taken myself off the Ivabradine to see if it was a side effect – but nothing changed so I assume it isn’t the Ivabradine. And that I’d had a nasty TIA last month and I showed her the rather startling BP/HR/pulse pressure chart.

Then she was cross with me. I hadn’t made an appt after the TIA (to be honest, although I didn’t tell her this – I just didn’t feel well enough to go)  She looked at my nice neat print out and asked what I’d done about a reading of 175/150 and I had to admit I hadn’t done anything.

Now then, she could have given me a right lecture, but she didn’t. She was cross with me, but respectfully and anyway, I knew she was right. She demanded to know why I hadn’t raised this with the Prof Cardio. But he was in a rush, so although I had taken the chart in with me I didn’t get the chance to ask him about it.

She’s raised the Candasarten by 4 mg to try and drop the diastolic without dropping the systolic too far.  I have to go back in two weeks for bloods. I hope they will do B-type Natriuretic peptide (BNP) but I’ll ask when I get there. (I’d like ANA done as well but one thing at a time)

Ooh and she gave me steroids which always make me feel so much better. I wish i could have them all the time – only of course I can’t because of their nasty side effects. But oh, while they last they are so good.

And I’m back on the Ivabradine for the inappropriate sinus tachy.

Thanks to my breathlessness and voice problems it can be difficult to get things said quickly. It is so important for a doctor to be willing to give you the chance to speak, even if it does take a little longer.

I do think having a “proof” helps as well. So if you can do take BP charts or photographs of rashes and weirdness.I am using iLOWER BP which is free and easy to use. It also records pulse pressure which is important, although it’s a rare doctor that actually knows this. You might also find the ABCD score  useful if you’ve had a TIA.

I even have that horrible neuro wanting a film of my next seizure. The neater and clearer the information the better as it looks like you’ve done it properly.

Couple of things to note for stroke risk; fluctuating BP is more indicative of risk than constant hypertension. A pulse pressure of between 60 to 70 isn’t good but it isn’t too bad if you are over 60. Research on people in their 40s to 50s however suggests that a high pulse pressure is indicative of stroke risk.

Low pulse pressure (less than 10 to 20) is indicative of low blood volume.

A lot of this is just part of the joys of dysautonomia.

On to the next tests…

The stigma of ME/cfs. It’s a mystery.

I have read this well presented view of the horrible stigma that comes with a diagnoses of ME/cfs. If you know someone with ME this is the article to read. It’s long but worth the effort.

There should be no stigma attached to being ill, but we live in weird times where one illness, which might get media attention, means compassion and another which gets negative media attention is treated with contempt and of course that means those who have the illness are treated with contempt.

Schmid gives a list of possible reasons for the stigma attached to ME. The first one she notes is “symptoms come and go.” There are plenty of other diseases in which symptoms fluctuate so people who use this excuse to hang their meanness on are on thin ice. Even cancer patients going through chemo have good days and bad days.

There are so many symptoms; this is simply because the disease is system wide. The sad fact is that the way modern medicine has moved means that a patient needs to have one or two very obvious symptoms that show up, preferably, on a simple blood test or at most an x-ray and can be treated by one of the astonishingly narrow specialists.

A patient with a system wide disease that it attacking just about every part of his or her body is just too difficult for these doctors to cope with.  The huge emphasis on holistic care and multidisciplinary working that I was trained in back in the 1980s was ditched almost before I qualified in favour of some kind of bizarre market model where the cheaper the disease the better.

Some of the symptoms are bizarre (writes Schmid) and this is certainly true. Some of my most bizarre symptoms I have never even mentioned to a doctor.  As Schmid points out most of the bizarre end of things come from disruption of the nervous system, but neurologists don’t seem to have a clue about them.  She writes about Floyd Skoot’s “Xerox machine” default word. Most of us have this. In my case it’s “dishwasher” or more recently “wishdosher”.

Despite the noted deaths from heart attacks due to heart failure and the shocking number of suicides, those with the disease are still treated quite simply rudely and even cruelly by most doctors.

She goes on to speak on how medics need educating about the nature and seriousness of the disease. All that is true. But I still want to know WHY this disease, more than any other, gets such appalling treatment.

I read Osler’s Web and although Ms Johnson gave a solid and well researched testimony about the politics and shenanegans that began with the Tahoe  Incline Village in America outbreak in 184-5 but when we know that it wasn’t just Cheney and Peterson who were asking the CDC to come and investigate. Dr David Bell says he did and they refused and then he discovered another doctor with a similar cluster outbreak who couldn’t get the CDC to respond either.

WHY wouldn’t they? Something made them determined not to investigate right at the beginning, before anyone from the CDC had met any patients at all.

The debacle soon spread over here and the comedy duo Wessley and White labelled it with a fake psychiatric label.  While this has certainly feathered their nests and got them in with the elite crowd, I still can’t see why this has been enabled?

There are quite a few diseases out there that have a stigma attached. Ask anyone with Schizophrenia how the world and it’s dog treat them. But I have never before come across such a serious disease, where the stigma is rooted in so much  spite.

And of course lies.

Doctors have always been willing to shove the truth under the carpet, but to tell a bare faced lie; I think  that seems to be a speciality wih ME patients. I think the very worst lie I was told, was by the neuro who saw me at the beginning of all this who categorically insisted I would get better within a few months.

When I began to go into a remission for the first time I really believed that this was it and I would be well and back to normal soon. When I crashed again I was confused and when it happened another couple of times I was devastated. Yet no neuro went back on that lie. They just repeated it.

Now that I have done the research and I know what fibro, ME and dysautonomia can and does do I am much stronger and able to cope with what it does do.  No one deserves to be lied to about how their chronic illness is going to go.

Interview with Prof. Dr. de Meirleir on whether ME/cfs is a disease.

Transcript: This is the first of a number of videos of the interview with internationally renowned ME specialist Prof. de Meirleir.

Cardiologist yesterday; Inappropriate Sinus Tachycardia

Went off to see the Prof yesterday. I did have a list of questions but didn’t get to ask any of them this time. However, he is going to see me in two months so I am hoping I can ask some questions then.

He has decided it isn’t POTS but is Inappropriate Sinus Tachycardia (IST). I’m sorry but the word “inappropriate” always makes me think of polite people saying someone else has been naughty – so I have a naughty heart.(David Goldstein in his book Adrenaline and the Inner World sees IST as part of the POTS family anyway cf. p 203)

Interestingly the Prof thinks if I had POTS my pulse would frequently go over 126 and for the 24 hr ECG it only went as high as 126.  But he also commented about my high BP so I raised the question of hyperPots. I do still want this considered and norepineprine and dopamine measured if possible. (Got a nasty feeling this will entail an endocrinology appt and I can’t face yet another specialist)

I was under the impression that a standing pulse above 120 was pots but he thinks it would be much higher. The highest pulse I’ve ever recorded was 148 but it only gets that bad on truly bad days. (As far as symptoms are concerned I feel pretty yuk with a pulse at 115 and as my “resting” pulse hovers around 100 to 110 I feel yukky a lot)

So, for IST he has given me a drug called Ivabradine which I must start on low and work up. This is designed to treat angina and heart failure and should bring my tacky down. If you click on the link you’ll see it’s a recent discovery for the treatment of IST, so I’m pretty lucky because the Prof (bless’im) has obviously done his reading and is up to date on treatments.

He promises to keep at it with me ’til we crack this thing. I have to admit the lead up to the appointment I was getting nervous – which normally I don’t. But I so very much wanted him to be able to help me and I was afraid I was going to face one big “no show”.

Doctors always think that when results come back “clear” or worse still “inconclusive” that we should be so happy about it. But really patients who are very ill don’t want results showing nothing – they want an answer and a treatment.  Having a doc saying “Your ECG showed…whatever” and follows this up with “And here’s a drug/treatment that might help” are like little oasis in the long desert of chronic illness.

There’s still a number of things to work at; my BP for one and the astonishingly wacky pulse pressures I get; sometimes as low as 10 but often as high as 60 to 70.

I seriously believe – though I might be wrong – that if I can get a HR of less than 90 and a BP that is stable, even if it’s a bit high, I would feel so much better. I know this won’t be an overall cure, especially if I do have ME as dx but it has to be a start in the right direction – which after 10 years is a relief.

I have very little sympathy for medics who moan about not knowing what to do.

A friend recently told me that his fellow medics tell him about patients with fibromyalgia coming to them and “whingeing” about their symptoms.  Thankfully I was just in crash post-wedding so I didn’t immediately tell him what I thought of his fellow medics but I did say I was more than aware that a dx of FMS got me immediately treated like … I used a rude word for poo.  His response was that the doctors didn’t know what to do about fibro – it’s difficult to deal with.

If I had been more with it at the time I might have given him a message for his colleagues; poor didums don’t know what to do with a very sick patient who comes to them because after all they are supposed to be DOCTORS trained in medicine and very well paid for it. Understandably the sick person would like some help. Doctors need to grow up and start taking seriously the responsibility of being a doctor, or go and find a job they can do, like cleaning the streets or something where they can’t do any more damage.  They will never be any good at being a doctor if they spend all their time soaked in their own narcissism with the delusion that the only important person in the room is them.

The major problem in medicine these days is that it is seen as a prestigious career for ever-s0-clever people, rather than a vocation to help the sick. People who spend all their time being told how clever they are do not like to face seriously complicated diseases like fibro, ME or any dysautonomic disease. It’s too difficult, involves focusing away from the doctor and onto the patient and does not lend itself to a tick box on a computer.

Treating patients with respect costs nothing and could save a life or two – or at the very least make someone’s life a little more bearable. I think the knock-on effect of patients being treated like persons with intrinsic dignity would be that doctors could cope with failure better and have more job satisfaction.

There is something so wrong in our culture when doctors not only treat patients so appallingly behind closed doors; but have no sense of irony is complaining publicly about how annoying really seriously ill people are when they come for help.

Looking at the state of medicine – and it’s not just in the UK, the same horror stories are told by people all over the Western world – is we have ditched God and with Him we have ditched the natural law and the recognition of personhood with it’s intrinsic dignity and intrinsic rights.

Entertaining dysphasia/aphasia in Fibromyalgia/cfs/ME/dyautonomia POTS – “Shambles”

One of the more entertaining symptoms of “Shambles” the name I have given my disease, is dysphasia. That is slow, slurred speech, word block and the most bizarre word replacements. This is quite entertaining to the kids, and I have a laugh too – because it is funny, but it’s also annoying and at times down right embarrassing.

Post-wedding crash has not been nearly as bad as I was expecting. I had planned for it so there’s been no home ed this week. However the children soon find stuff to do and I am pleased to see how much they read. But I am shattered and could in no way hope to home ed this week.

Back to my entertaining aphasia. I caused great hilarity in asking Roni to fetch my “homing device” when I meant mobile phone. No, I don’t know where “homing device” came from.

My default word seems to be “dishwasher” for some reason and as I try and correct it I can come out with all sorts of gibberish.  The dishwasher meanwhile got called “the disappearing box” for some unknown reason, while a kitchen is a pilchard house.

I had a whole list of bizarre and unheard of words for a watering can.

I don’t have problems understanding other people even when I’m really shattered but producing coherent language can be a right challenge at times. It’s a not often noted symptom of “shambles” but there are a lot of people who report having it. High res SPECT scans and high res fMRIs are showing more and more that Fibro and ME brains have some odd damage and lesions in unexpected places. It is not the same as MS but very similar.

Along with the word confusion, gibberish, slurring and just word block comes the short term memory problems. In a bizarre twist yesterday while I couldn’t come up with the word “watering can” I had technical language to do with theology rolling off my tongue without a problem. Even I was taken aback with that wondering how I was so fluent in something probably more difficult and couldn’t name a garden tool!

I can go for days speaking perfectly ok but in a crash or when I’m just tried it can quickly go to pot. Slurring, just running out of words and giving up. I do think things have been worse over the last month and I suspect I had something like a TIA about a month ago; so it could be that. Who knows? I don’t.

While the symptom is pretty ubiquitous among both the ME community and Dysautonomia lot, I can’t find any specific research on what the root cause is. Most people either get the brush off from medics or a “nothing we can do” response.

I am one of the lucky ones. I don’t think many people care less whether I sound daft or not – which is a blessed relief. Some of my kids, and even my lovely new daughter-in-law are amazingly good at translating so it doesn’tget too frustrating.  But also, I’ve reached that point with “shambles” where frankly I can’t help what anyone thinks of my weirdness, whether it’s twitching and jerking, keeling over, or my neologistic miscues. I can’t control my “shambles” so I am learning to live with it. I hope others are learning to live with it too. My poor ol’family certainly have no choice.

I don’t really have any advice for those of you reading this because you struggle with it too. The only thing I can say is, laugh a lot. Don’t let the thing upset you. And have pen and paper at hand. Sometimes I can type things I can’t say – weirder and weirder but it’s true.  Word block isn’t helped by typing but I don’t often get word confusion, or at least not as badly when I type.

And remember, you’re not alone in blurble-flurble-dingbat-undermender.

House of Lords debate on the PACE Trails and the lack of care in the UK for ME/cfs patients.

I am posting this here for those of you who are interested. I know, more or less, how it went down and I just can’t face watching the thing. I have huge respect for  The Countess of Mar and wish more people were like her.

The MEASSOCIATION has the vid and TRANSCRIPT.

I am particularly disgusted (but not surprised) at Robert Winston’s response. He obviously hadn’t a clue and hadn’t bothered to listen either. I believe he’s in the eugenicist camp anyway, so he wouldn’t much care about lesser being like ME patients. Once killing disabled unborm children is ok, there’s little left ethically really.

Overall the standard of debate here was dreadful. I can’t believe the intellectual laziness and refusal to actually look at the problems with PACE.

The Business of Post Exertional Malaise. (PEM)

Post Exertional Malaise or PEM as it’s called, is such a major sign and symptom of ME it is seems it should be the primary box to tick. If you don’t have PEM, you are most unlikely to have ME. It goes hand in hand with exercise intolerance. Obviously a person who can tolerate aerobic exericse doesn’t get PEM. But there are illnesses where a person may have exercise intolerance (COPD and heart failure spring to mind) but don’t have PEM.

So how does PEM manifest itself?

It is, in essence, a state of collapse. The patient is usually in a great deal of pain that many of us describe as a bone pain. It does feel as though your bones actually ache. There’s extreme brain fog with this so that you can’t think straight at all, or express yourself. In my case I quite often can’t speak or can’t speak clearly or with proper words.

Vision and hearing can be affected. In my case I tend to loose perception and get  tunnel vision and photosensitivity. I become very sound sensitive, but others loose hearing.

The worst part (IMO) is cyclical vomiting. I’ve only had this a couple of times thankfully, but it’s the most painful, exhausting, horrible thing.

One of the less horrible symptoms of PEM is the inability to stay awake. When I’m crashed badly enough I just fall asleep or semi-asleep. My body does it almost like switching off. Unfortunately this is not always the escape you might hope for. More than once I’ve dreamed I’m in a huge amount of pain.

This crash can last from a few hours to a few months. I will never forget the crash I had three years ago which lasted just over 6 months. It’s not something I want to repeat, so why those in the pyschi school want us to do so is beyond me.

When certain luvvies in the psychi industry talk about patients “fear of exercise” as though we are lazy twits who just need to work harder, they never seem to get that we KNOW what can happen because all of us have had it happen to us. Those luvvies think we should be barmy enough to choose, quite deliberately to put ourselves into crash. As this has killed a few patients (that Labour MP comes to mind) it seems like a ludicrous approach.

The increase in pain with PEM has been shown to be the muscles hanging onto lactic acid. Mitochondrial defects prevent the proper use of oxygen in the body. For those of us with lung disorders our oxygen SATs drop out quite often anyway and with the extra broken bit of mito dysfunction our bodies don’t process oxygen the way they should – and we crash.

There is a great deal of biomedical research explaining why we are so ill. If only Lord Winston and his cronies could be bothered to actually READ some of it!

Getting some medical attention. Private or NHS….(and Bob Millar’s fight for Ampligen)

I probably blogged after I had phoned the hospital and came up with the likelihood that I would not be able to see the Cardiologist until May. I was gutted, as I really thought this time around there might be some treatment, or some help of some kind.

After doing my own research (something too many doctors still disapprove of, as though they are afraid of patients who know about their own bodies) I found out that I most likely have Postural Orthostatic Tachycardia Syndrome; POTS. I did a couple of poor man’s PoTS tests to check.  Sure enough from lying down to standing up my heart rate whops up by more than 30 beats per minute and hovers over 120. If I am busy doing stuff like cooking, housework etc it can rocket up to 130s and 140s. So not a very serious POTs case but bad enough to make me feel horrible. This coupled with unstable hypertension and sudden onset of tachy at night leaves the question is this hyperPOTS or a combo PoTs or even Inappropriate Sinus tachycardia (IST) with Orthostatic Intolerance.

I don’t really think I have IST. My sitting up resting HR is 100+ usually but lying down it’s never more than 88. If I lie down long enough I can get it to in the 70s. I don’t lie down much in the day though, so my “normal” HR is around 100 to 110.

POTS is a complicated disease set and wherever I went to seek info the same thing was said “Doctors don’t know about POTS” and “Even most cardiologists know nothing about POTS”…

So I went in search of a specialist. In the UK, as far as I can see there are NO specialists in hyperPOTs. The world leader in hyperPOTs research is Dr. Grubb in the USA. Even dr Julia Newton who is a leading researcher in POTS in this country doesn’t tend to have much to say about hyperPOTS. She deals with the more common forms of either POTS with no BP changes or POTS with Neurally Mediated Hypotension(NMH)

I have found a POTS specialist at the hospital near me. He doesn’t have a background in hyperPOTS but he knows more about POTS than any other cardio I’ve ever met. The last cardio I saw dismissed me out of hand, even after admitting there were changes on my ECG, just because I have fibromyalgia.

So, it’s been a right game trying to get tests, let alone treatment.

Well the troops are rallying. More than one person is offering me the chance to go privately.  I’ve just received money from two lovely friends and a family member is also offering to pay for me to see a cardio privately. I am so grateful for this help! I really want some answers, especially as hyperPots can be genetic, especially from mother to daughter. Not a nice thought at all!

Getting onto the hospital we find the POTS specialist doesn’t have a private practice!! Arrggh! He is spread so thin between University, NHS and some charity work that I can see why he might not need, or want, a private clinic.

With some badgering from dh, I’ve got an appt in March (much better than MAY – but leaves me worried I’ve shoved some other sick person further down the line).

So what is my plan of action?

I am going to request epinephrine and STANDING norepinephrine tests as well as standing dopamine test.

I also want them to check out baraflex failure.

I also want the various blood tests for Lupus. It’s shocking that I’ve never even been tested for Lupus despite the symptoms overlapping so much and having a child with autoimmune disease (type 1 diabetes) which should even tick the (stupid) NHS statistics box.

It’s very frustrating that so few cardiologists have any knowledge of POTS and the way it affects people. I am going to try and find out if there is a specialist who takes private patients.  It would be good if there were dysautonomia specialist clinics – I can dream!

However bad it’s been for me, and however scared I might be of ending up bed bound, I am one of the very lucky ones, because I have managed a life with this set of diseases. My heart goes out to Bob Millar who is on hunger strike for Ampligen to be approved. I have to admit, I am not one who favours this sort of action (too many memories of the days of innocent until proven Irish in the UK) but Mr Millar had been bedbound with ME and Ampligen had him up and about with a life to lead. He has relapsed badly and he so very much wants something in place in case his sons become ill. I can relate to that. Perhaps you, too, are uncomfortable with hunger strikes, but Mr. Millar is in a worse position than most of us, he had Ampligen and got his life and a lot of his health back – and now the rug has been pulled from under him.

Keep him and his family in your prayers.

The fight for Ampligen is on.

UPDATE: sadly, yet again the FDA have refused to approve Ampligen for ME patients. They are asking/demanding for Phase III trials to be done. This is massively expensive and I am unsure how Hemiphrex are going to do this; especially as there are some complications in the Hemiphrex finances apparently.

Can’t help wondering why approval can’t go ahead with “yellow slips” for this drug now it’s passed Phase II. I think there are plenty of ME patients who would be willing to risk it considering how horribly sick many people are.

The fight continues.

 

Over the next two days the FDA (Food n Drugs Admin in the USA) are going to hold a webinar on  Creating and Alternative Approval Pathway For Certain Drugs  Intended to Address Unmet Medical Need.

There is some understandable concern that this is more smoke and mirrors and more stalling from the FDA over approving Ampligen for patients with severe ME/cfs. I don’t think I have stumbled upon a disease this serious that has so much bizarre politics surrounding it.

There is no doubt that ME is a very nasty complicated disease and there are plenty of co-morbidities to add layers of complication. Very few people with ME only have ME. Most of us have other stuff like FMS, PoTS, other dysautonomic problems. We have compromised immunity and endocrine abnormalities. I don’t really blame doctors blanching when faced with someone who has such a shambolic and system wide disease set. (I can’t see this as one disease it’s a multitudenous mass)

Of course one of the major obstacles even in America where at least there is the International consensus diagnostic criteria – which outstrips the ridiculous Oxford Criteria here in the UK – there is still no definitive narrowed judgement as to what ME/cfs actually is.

The daft name Chronic Fatigue Syndrome came from the CDC in America back in the ’80s when, for reasons that have never been clear, they were hell bent on not helping the patients affected in those cluster outbreaks (See Hillary Johnson’s tome for the full story; but even she couldn’t work out why the CDC staff behaved that way)

There are a number of biomarkers being put forward for the disease. The primary one would be the Post Exertional Malaise (PEM) which can be measured in muscle biopsy and VOX2 Max tests (that is oxygen consumption)

Other biomarkers are mitochondrial dysfunction and Mast Cell reactivation.

Then there’s EBV reactivation antibodies, Coxsackie virus, CMV and a whole lot more.

The rates of heart failure, kidney failure and bizarre forms of cancer are much higher in ME patients (and life expectancy is 58 as opposed to 82 in the general population and this is a massive improvement from a few years ago when heart failure and ME gave a life expectancy of 46/7.

Coupled with a quality of life that has been measured as worse than those with COPD you can see why so many patients are begging for a chance to have this drug (or any drug that might work!)

A doctor once said to me that people don’t die of ME, they die of something else. It’s a bit like saying the 1918 flu epidemic was fine really because no one died of the flu. No, they didn’t, they died of pneumonia or other opportunistic infections. The fact is, however, that none of those people would have died if they didn’t have flu.

People don’t die of HIV, they die of the opportunistic infections.

There is a strongly supported hypothesis that CFS should be renamed CIDS or CFIDS; Chronic (Fatigue) Immune deficiency Syndrome.

Pray for those who are fighting for Ampligen to be approved. There are people so ill they were bedbound until they received Ampligen in trials. It might not be a cure-all for ME/cfs/cfids/whatever-the-hell-this-is but it certainly helps some people.

getting a heart monitorg

Yesterday after delays caused by the snow my new heart monitor arrived. It’s a watch with a chest strap. I bought one of the cheaper ones thinking it would do. It doesn’t work. The watch doesn’t recognise the chest strap. So I am sending it back.

Now I wonder whether to try again and get one of the expensive ones. On the lists people tend to recommend the

ideally I would like a simple heart rate monitor that will monitor my heart rate all day and with an alarm so that if I go above a certain rate it tells me to stop it.

I had set my personal limit at 125 and was using the finger pulse and oxy to check. However I can’t wear it so I tend to have it there and check my heart rate once I start feeling rough. But this often means I don’t check until it’s up around 128 to 134ish. I would then sit down until it reduced to under 125 and then get on with whatever I was doing. This hasn’t been working. I am still crashing each day and feeling horrible quite often.

So the new plan was I would stop at 120 to see if keeping my HR under 120 would reduce symptoms. But for this I need a good reliable HR monitor so I can sit down or lie down as soon as my HR hits 120.

As I am not going to see the cardiologist any time soon, I thought I would try and do something to improve things myself. It’s a shot in the dark really but it seemed worth a try.

So. I need to rethink the monitor. If anyone can recommend one that’s reliable let me know.

It’s okay to be angry and frustrated.

H/T Living With Bob blogspot

I am angry and frustrated. So, I guess I would say it is okay to be angry and frustrated. I am not beaten…yet. But sometimes getting a grip of what’s really happening and not hoping for something that can never and will never happen is so darn difficult. But I am supposed to be the “brave cripple” the “doing okay chronic” the …I dunno what I’m supposed to be to be honest.

I saw the new Cardiologist at the end of October last year. He was nice to me – which was a new experience all by itself. He said he would help me. I waited nearly two months and then had a 24 hour ECG. That was five weeks ago. After a couple of days trying to phone the hospital – and remember peeps, that takes up some of my precious spoons leaving me with less for the children and home.  Finally got them to take a message and to my utter astonishment the Prof’s secretary did actually phone me back the next day.

She said the ECG would be on his desk by today. (yep 5 weeks after the event where I was told results would be 10 days to 2 weeks). He will look it over in the next few weeks and I might get an appointment sometime the end of April, more likely the middle of May.

I know very well that for a full dx I need further tests; epinephrine and norepinephrine levels and possibly (though I doubt I’ll get this) standing dopamine levels. Cortisol and other adrenal function needs testing and going bt the massive yoyoing of my BP, I should be tested for baraflex failure.

So, chances of getting help in the next year or even 2 years looks unlikely; if it ever happens.

This is made a little worse by the fact I am watching someone with ME (although I suppose only have ME makes things simpler) who under private care is getting better.  I don’t begrudge him this – I am really pleased for him. But it’s a bit wallflowerish watching the progress of someone else (who hasn’t been ill as long as me) while I am still slowly, but surely, getting worse. It’s just much harder to get through each day.

I have to accept that I can’t function in the afternoons, or much in the evenings unless I sleep in the afternoon, which was happening because I couldn’t prevent it – but now is back to just unbelievable fog and slowness and just can’t-do-itness.

Self pity is ugly, I know that, and I know, after this small surrender, I will grab back at the weapons and go back to fighting this multi-headed monstrosity of a disease set. It hasnn’t beaten me yet.

But I don’t think I should have to fight every day. Sometimes I need to be angry, fed up, frustrated and even be allowed a quiet cry in a quiet corner. If you are going through this too, then I know you will understand and be grateful you are not alone; honestly, you are not alone.

If you aren’t and you don’t – then please don’t judge and keep it to yourself will you?

PS Dysautonomia Prison has changed sites so this is the new site place

Dr Julia Newton’s research in the UK!

In Newcastle Dr Julia Newton has been doing some proper research into ME/cfs. Her findings are interesting and show that autonomic disorder seems to be pretty universal with this disease. She is hoping that her work on dysautonomia in ME may provide us with a straightforward biomarker for accurate dx. But she is sensible enough to note that ME is a very complicated disease with a range of disorders co-morbid within it.

Dr Julia Newton’s lecture with slides is available here. This is the same lecture given at and Action For ME meeting. She entitles it Standing Up for Fatigue after the brief intro she starts talking at 2 mins 6 secs in.

A Phoenix member has worked hard to provide a pdf transcript.

I would like to see this genuine researcher get an award, but that is highly unlikely. It’s still a massive fight to get the funding for the research!

Perhaps she should suggest workhouses for really annoyingly sick people. Then she’d get an honour or two.

Dr Newton is taking muscle cells and testing them in her lab. From this hopefully some more proof of Post Exertional Malaise can be found, and perhaps a treatment. (I am living in hope). PEM is one of the most debilitating aspects of this disease. It’s what a lot of us call the “crash”. It’s not just feeling tired – whatever some eejits might say, it’s brain fogging, body lead like utter yukkiness.

Dr. Snell who has a background in sports medicine has done some fascinating research on this area.

There are members of Phoenix Rising who have volunteered for follow up studies on PEM. Knowing what it feels like I have to say I applaud their immense courage.

Sorry to do two MEcfs FM Dysautonomia posts on the trot, but it’s good to see real research happening even while the British Government reward those who block it’s application.

I saw the Cardio on Oct 29th and had a 24 hr ECG 13/4th Dec and finally managed to get through to the hospital today where I received a promise that the  Professor’s sec would phone me tomorrow. I’ll be amazed if she does.

I am awake during this afternoon’s crash which is better than it has been!

free book on ME/Cfs/Cfids whatever you call it. I call it Hideous. And an unchivalrous knight.

There is a book that apparently ME/cfs folk think is very good and it’s going to be free next weekend  You can get it HERE in USA and HERE in the UK It’s also available on Amazon Library if you have a kindle and Prime membership.

I’ve not long got back from my chiropractic appointment. I know my GP doesn’t approve, but it really does help me. It’s not a long term solution for someone like me, but no one has pretended it is. However, just having those few days, sometimes up to two weeks where I am not so shaky and trembly; where I can stand up without tipping over, swaying; where my vision is clearer (not sure why that happens, but enjoy it while it’s there); Where the afternoon crash is not such a nosedive and the pain is less, down to 1 or 2 on the pain scale. It’s nice.

Today he gave me extra needles and he adjusts the treatment to how ill I am. I appreciate that a lot.

There are a lot of snake oil salesmen out there. More so thanks to the shocking lack of tests, treatment or basic care offered for ME/FM and dysautonomic patients on the NHS. I have come across many patients who have spent money they couldn’t afford or didn’t have trying to find some relief from all this and they are still very sick. I am fortunate that I have found some help with chiropractic treatments.

A petition was opened asking for the knighthood given to Simon Wessley to be removed. Wessley has done a great deal of work in the UK which has made sure patients are labelled with “false illness beliefs” and the “it’s all in yer ‘ead” attack most of us have faced. Thankfully the biomedical research is still happening in America, Australia and Denmark among other places. Lots of new answers are coming forward which explain why we are so sick, and there are some hopeful drugs out there. Amligen is still in play.

Wessley has demanded the petition be closed and so it has been. Those who set it up are hoping to find some free speech elsewhere. While I personally think the shutting down of a legitimate petition childish and rather nasty when you consider the lack of voice patients have, all is not lost. You can read some of the comments from the petition here.

I tend not to believe petitions do much good. We had a few going to support the intrinsic rights of families to home educate and the Labour Govt made it clear they couldn’t care less about rights or public opinion, unless it suited them. The same still goes or people like Wessley would be disciplined not rewarded.

Wessley’s GET made me much much sicker today than I would have been if I’d been given the Nancy Kilmas advice of bedrest. If I had rested in the beginning, as many patients who are in remission now did, I might be (though it isn’t certain of course) in remission. I read the research far too late.

So if you are reading this because you are newly ill or newly dx with one or more of these hideous diseases, don’t do what the doctors tell you until you have read the research and done so with great care. Some of the stuff is difficult to understand, but some of it is clear and straight forward.  There are some great people out there who understand the complicated stuff and are willing to explain it.

Take charge of the disease, don’t let it take charge of you; and sadly you will have to treat what doctors say with extreme caution.

Having PoTS makes me a modern girl after all.

I tend to think I’m a bit old fashioned in many ways but having PoTs makes me modern it seems. It was identified by Schondorf and Low and named as POTS – Postural Orthostatic Tachycardia Syndrome in 1993, so not that long ago in medical history terms. I assume these gentlemen made the dx criteria of heartrate increase from lying down to standing of more than 30 beats per minute within 10 minutes of standing or hitting more than 120 beats per minute (for adults).

While many Potsies do have neurally mediated hypotension with this (NMH) where their blood pressure plummets with being upright, that is by no means the only Potsie flavour out there. Those of us with sudden hypertension or (like me) sudden massive BP spikes followed by equally massive falls are not as uncommon as might first appear.

Migraine; apparently this is a fairly common symptom with dysautonomias. I’ve had them one and off for years. As a child and teen they were utterly horrendous  and very difficult to control. I ended up on some long term meds for about three years until finally they seem to go away. Then I would have one now and then. I would have an aura sometimes and soon learned that if I took enough meds once the aura started I could get away with a bad headache, but if I waited for the full on pain- nothing much helped. My more recent migraines have been kinder in that I have always had an aura. Lucky me! For those of you who don’t know- or maybe have an aura and haven’t recognised it, mine is like this; I get black dots and a sort of grey purple fog in front of my eyes. This is sometimes followed with the tunnel vision thing with white worms (sort of worms). As the tunnel vision gets worse and the black dots get thicker on comes the pain. If I get some migreleve pink before the worms I’m usually ok. I think that kind of aura is fairly common. Some people get a metallic smell or taste as well. I rarely get that.

This time however I had no aura and I was floored. Amitrip has been a great help keeping migraines at bay, but if I get one I take two pink Migraleve four hourly leaving four hours between the last pink to taking the night time amitrip. Now, that’s what I do but be warned – this is important – Migraleve and amitrip are contraindicated. That is you are not supposed to take them together as it can have some serious side effects. PLEASE , if you are in the same boat as me, be cautious. Most of us with these ‘orrid diseases have some drug sensitivities and I don’t want to cause problems for people.

If my GP knew what I get up to when he isn’t looking…!

I am still waiting for the results of the 24hr ECG and a new appt with the Cardiologist. Sadly I think I’ll need to be well enough to fight for results and stuff. I was warned when they unwired me. Ah well. I’ll give it another week and see.

Check out DysautonomiaPrison for article updates

The “Why Me?” moment.

Please take a look at this excellent blog post at Lethargic Smiles on those moments when us chronics groan under the “why me?” dump.  She approaches it with good sense.

She also has a clear list of symptoms for those who might want to know why we get a bit cranky at times.

The Lucy Pevensie effect. ME patients are not lying.

Lucy Pevensie is a character of the C.S,Lewis Narnia books. In the first book, The Lion, The Witch and the Wardrobe, Lucy has returned from Narnia and tells her siblings about it. They disbelieve her. Then Edmund visits Narnia too but denies it while Lucy is faced by a wall of disbelief and runs away crying.

The old Professor of the house asks the older two Peter and Susan, who is most likely to tell the truth, Lucy or Edmund. He then suggests that even if her story seems unlikely at first they should believe her.

ME/CFS and fibromyalgia are like a dark Narnia where the witch of a hideous disease has control. We explain what we are experiencing and like Lucy we are disbelieved. Many doctors behave like Edmund. They must see how sick their patients are but they want the Turkish Delight offered by bad bone idle medicine and so deny there is anything wrong.

I have been listening to lectures about more recent research into fibro and ME/CFS and something that has come up (again) is that patients not only lose their abilities, jobs and receive little care, but that they lose family and friends. People can’t be bothered to stick around someone who just doesn’t get over it. Many of us have faced the sense that doctors think we are making it up.

Dr. Stuart Drescher PhD, himself an ME/CFS patient talks of the conversation over secondary gains. Back in my nursing days we spoke of secondary gains, mainly with what my friend called “the worried well” who did not wish to get well in case they lost something of the attention and care from family members. In real life, we rarely came across patients like this, though I did personally have a patient who insisted she couldn’t get well or her son would go off and have a life. Ouch. Most patients, whether in the “worried well” camp or in the seriously mentally ill camp wanted to get better. In fact most patients lost so much that if there were any secondary gains (and there rarely were) they were drowned out by the sheer number of losses in life, not to mention the guilt they carried for the impact their illness was having on others.

The same goes for any serious long term illness. We lose so much. We lose our jobs, we lose our basic abilities. Many of us find standing up bloomin’difficult. We can’t do so many of the things we used to do any more. We lose a lot of dignity as we struggle to keep going. Some of us have the indignity and gross inconvenience of having to use a wheelchair. (I am grateful for my wheelchair because it means I’m not housebound, but the world is not designed for wheelchairs – ask any mother with a buggy).

I wonder if doctors really are as innocent as Peter and Susan when they refuse to believe patients or whether (as I’m afraid I suspect) they are really a bunch of Edmunds who know very well how very ill people with ME and Fibro are but they just don’t want to be bothered to deal with the shambolic and complicated disease, particularly when it might not be politically expedient. When those who have been the most obstructionist in allowing research and care for people with ME/Cfs, veterans with what has been called Gulf War Syndrome and for some reason dragging those with fibro into the dark, get knighthoods, it’s hardly surprising that medics feel the pull of politics over “do no harm” in medicine. (Coupled with something like and OBE for a medic who performs abortions, we can see how those who push the’ life unworthy of life or care are politically lauded).

How many family members who have walked away do so because they believe the person with the chronic illness is making it up, or because they just don’t want to bother with it?

A friend of mine was talking about how she thinks she is “hard” and that people won’t ask her for help, even when she would be willing to support them. In fact, as I pointed out to her, she is one of the most supportive friends I have.(I have other very supportive friends too) She sees me very regularly, so if anyone was going to get sick to death of my illness it might be her, but she doesn’t. She doesn’t over dramatise it, and whisper behind her hands about it, but nor is she dismissive. I don’t have to think like a performing seal when she’s around. She just accepts that I’m a bit bust and even jokes with me about my weird and less than wonderful symptoms. I love that.

We aren’t lying. We aren’t making it out to be worse than it is. We aren’t nearly as stupid as we look. And we don’t balance balls on our noses – not even in a Rombergs.  😛

Humility verses indispensability.

Pride is an ugly sin and is at the root of all sins from the moment Satan said “Non serviam” that is “I will not serve,” pride has been causing bad things in God’s good creation.

Now back in the good ol’days of the Church, before life got soft sometime in the fourth or fifth century, there were no confessional boxes with nice anonymous grills. Oh no, none of that. People confessed their sins before the priest and anyone else who happened to be there. There was often some pretty public penances given as well, especially for public sins. Even kings were told to wear sackcloth and ashes and walk a pilgrimage or two.

If you’ve read Sigrid Undset’s Kristin Lavransdatter (a wonderful trilogy which I highly recommend) you will have seen that Kristin walks a very public pilgrimage in penance for her sin against God and her father. (See how careful I am not to put a spoiler in for those of you who haven’t read it yet 🙂 )

So I will make a confession here. I have caught myself with a very subtle type of pride and its about being indispensable. My terrible fear of not being useful. God is curing me of the disease of indispensability by having me be really ill. So, good things do come from being ill.

I noticed this pride as Christmas came and I just hadn’t done all the things that I usually do in preparing, cooking, wrapping, getting good presents for people. I like Christmas to be just so, and very special so in the past I’ve spent hours, staying up half the night wrapping, arranging and God knows what else.  It all sounds very generous and kind doesn’t it? But in fact I got a lot out of it. People saying how wonderful I was at all this.

So this year has come as a hard lesson. I can’t do it all. In fact a lot simply hasn’t happened. Christmas cards didn’t happen until the last minute and then only some cards. I didn’t cook enough so there are people without the usual chocolates, chutney’s cakes and sauces. Iona has made a lot of really lovely things, but usually we did it together so a lot could be done quickly.

Wrapping presents defeated me in the end and I just had to cave and go to bed (pulse hit the high 130s as I tried to get the washing done as well). Iona and Josh stayed up and finished the work.

Alex and Anna have been over to help with the final preps and making the Christmas dinner. There are other people who can take up the slack in the rope. I am grateful, but also it upset me. See? It wasn’t just about getting it done – it was about me getting it all done. I have to be useful.

I wanted to be doing it all. I wanted to be the queen of Christmas, making it lovely for everyone and basking in pride. Oh dear me. Now that I can’t I am learning a new humility.

I suspect this particular form of pride is mostly a woman’s problem.  Many of the saints were hidden little people who spent a lot of time being very ill. I think I need to remember that next time I am getting frustrated over what I can’t do.

I came across a fellow ME patient a couple of days ago who said she was lucky in that her family took care of her and made sure she could both cope with and enjoy Christmas. They accept she is very ill and don’t try and force her to perform. A little ruefully she said she wished she could offer something in return. Looking at her, I thought, well you are offering something. You are offering your family the opportunity to take care of you. All those people at the last judgement standing on Christ’s right hand had been feeding the hungry, giving drink to the thirsty caring for and visiting the sick and those in prison and so on. If there were no sick, housebound, imprisoned, hungry thirsty and naked people- how could they have done all that?

DysautonomiaPrison.com
Tidbits

I think when it comes to us sickies and cripples when we stand (before by then we will be able to!) before God, He won’t ask us so much about all the stuff we couldn’t do, He will say, “Did you accept the people I sent to help you? Were you kind and polite and patient with them?” And of course, “All those people who wouldn’t help, left you to struggle and made life even more difficult; did you forgive them?”

So, fellow mothers out there watch for this sin of pride. Don’t learn with the holy 2×4 as I have done this Christmas. Learn from me. I like the saying that any fool can learn by his own mistakes; the wise man learn’s from other people’s.

POTS, ME/cfs, Dysautonomia. FMS: My 24 hour ECG – did it show POTS? PS FDA meeting over Ampligen

On Thursday I went to the hospital to be wired for a 24 hour Echo Cardio Gram. The first thing they did was a short 12 lead ECG with me lying on the bed. This showed that I was tacky already – but I had just wheeled myself into the room. The reason I can’t use my shove-it wheelchair myself properly these days is how horribly tacky I get when i do.

Then they put a three wire ECG monitor on me. This was stuck on in three places and I was to wear it until the same time Friday. Then I had to return to the hospital to have it removed.

The kindly Prof, has promised (bless his cotton socks) that he will do all he can to help me avoid the hideousness of a tilt table test.

I’ve come across more than one unfortunate POTsie who has been through the torture that no terrorist has been given, four times before getting a definitive dx.

So, to avoid this nauseating, black out and fainting inducing NHS-theme ride, I was to make sure I made myself as tacky as a brass

pineapple for the ECG. Thus the Prof instructed me. Thus I obeyed.

So I spent Thursday doing washing, cleaning the house, cooking and making things and being up and down as much as possible. I hit well over the 125s and even registered a 132 on my finger pulseometer. So I hope that was enough.

The dx of POTS is basically this. You must have had problems for more than 6 months. From a lying down to standing your pulse must go up by more than 30 beats per minute or be over 120 within ten minutes of being upright. Easy.

For those of us looking at a dx of either hyperadrenergic or combo POTS we will have a rise in blood pressure to go with it- like badly matching socks. More commonly in POTsies is hypotension, but some of us like to be different. In my case I get massive spikes in BP with the occasional sudden drop to just below normal. This means I never need to spend money on a theme park ride. My body provides the Apocalypse experience without me needing to stand in a queue or spend any money.

Anyway, I hope my pushing my limits to crash means I will quickly get a dx and some treatment. I am realistic and know there is no cure, but at least for POTs in most of it’s lurid flavours there is some kind of treatment.

If having crashed out so badly I STILL can’t get dx pleased be warned the “brave cripple” will turn into a raging ranting maniac. My patience with the medical profession ran out a very long time ago.

THIS ARTICLE explains quite a bit.

Get the low down on Hyper POTs here. There’s an amazingly foggy-brain blowing thorough overview HERE

So presuming the tacky is clear enough that I get the dx of POTs then what kind of POTs do I have? Going by a number of symptoms; hypertension, out of control asthma and breathlessness, tremour, shakes and twitching and jerking.

Overview of my BP, Pulse (blue) and pulse pressure(purple). You can see how sometimes things are better than others. Another typical POTs thing,

I am hoping that as the Prof mentioned testing my “flight and fight” responses that the NHS do at least allow for epinephrine and norepinephrine tests. I doubt very much I’ll get standing dopamine tested or Mast Cell tests. Neither do I expect to be tested for the rarer forms of EDS even though there’s a chance that is playing some role here. Chances are his F&F response test might be slamming a book shut near me. That seems to be the level the NHS is at these days.

As more recent research shows Fibromyalgia overlaps so precisely with Hyper PoTs I assume I have hyper or combo (because of the sudden drops in BP and the occasional very low pulse pressure around 1o).  Like DysGirl I have fluctuating pulse presure. Sometimes normal, Sometimes too high (above 50) and sometimes too low (below 30).

And now all I have to do is wait. And very probably chase up the results and remind the NHS machine that I exist.

Please add an extra prayer or two for patients with CFS/ME as tomorrow there”s a hearing with the FDA (Federal Drug Administration in America) over  whether the drug Ampligen should be approved for the treatment of CFS. It’s looking like a rocky road ahead, which is nothing new for patients with this disease. The initial negative approach caused the shares of the drug to suddenly drop by 45% which only reminds us that patient need and care is not the priority ever.

However this conclusion from the FDA prelim review has also been released.

CONCLUSION from FDA prelim review
“In summary, CFS is a serious, life threatening and unmet medical need. There are currently no FDA approved products specifically for the treatment of CFS. Ampligen has the potential to be a positive therapeutic option for patients with CFS who do not have an alternative to directly treat the condition. Given the overwhelming physical and cognitive health issues; the decrease in activities of daily living and overall lack of quality of life associated with CFS, Ampligen clearly represents a clinically meaningful advance for a significant unmet medical need, and the weight of evidence supports FDA goals to advance treatment for chronically ill patients with severe debilitating, life threatening, conditions such as severe CFS.
It can be stated that the burden of the symptoms associated with CFS is greater than any risks associated with Ampligen, since a CFS sufferer’s life may be at risk for years of debilitation often followed by premature death.”

Please do pray. As things are there is very little treatment for this. Many people are bedbound, very debilitated and desperate. 

Trusting the children to get on with it – even when I can’t.

I have the flu. It has floored me and all my careful end of term planning to help me plan the beginning of next term has just hit the wall. This is where I get a bit frustrated. So, I am trying to re-adjust the planning and get the children working with me feeling non-functional.

After the problems over the summer I thought I should plan ahead for ‘eventualities’ but I think I may have planned myself into a corner. I am slightly more functional today so I’m going to get them working and hope we can adjust the plans as we go.

Yesterday the children just did reading. That’s still learning, so I’m not worried. I think the key to keeping the whole thing moving along is to have the children in the habit of learning no matter what’s going on. I am trying to write out plans so the children can get on, and if someone else needs to step in with them, they will see what is happening too.

I don’t know any other chronically ill home educators at the moment, so I really am making it up as I go along. Thankfully I don’t feel pressured to “Perform” from anywhere but myself at this point.  The only person getting bored and irritated with chronic debilitating illness is me.  I’ve been reading the wonderful blog Living with Bob on and off  and I noticed, that like so very many other FMS/ME/Cfs/POTS/dysautonomic folks she has lost friends and family over how sick she is.  (scroll down to sorting wheat from the chaff). I think the fact that many/most of us have seen friends and family vanish (run screaming) into the sunset, we learn to be more self-reliant.

If you look at this article and comments that says a lot of us are labelled as slothful  you will see heartrending statements of people left destitute when too ill to earn money. These are people who have families comfortably off.

Frankly, after ten years, I really couldn’t care less what people think of me. God is my judge; and thankfully a merciful one.  I am very, very blessed to have friends that have been sensible about how sick I am. and I have always had exactly what I needed to get through each day – even in a full on crash.

I do think us sickies need to be cautious when it comes to “wheat and chaff” that we don’t turn into the very chaff we are blowing off. Just about all people who have vanished from my life or are at more than arms length are those who want everyone to be looking at them. It’s all about Me/myself.I people. Well, the danger is we start having the same attitude because we are ill. Having children is a great balancer. It’s about them and their needs and that helps keep the “ME” stuff at bay.

new website that looks good for Dysautonomias and their stuff.

There is a new website just opened for DYSAUTONOMIA SOS  with lots of information and personal stories. THEY ALSO HAVE A BLOG. I have been told there’s a section on hyperadrenergic POTS but I can’t find it. If you spot it – please let me know.

Meanwhile there’s this thorough article on Stop  POTS on hyperadrenergic POTS

research into ME/cfs at Newcastle University

Via the POTS Uk facebook page I’ve learned that a group at Newcastle University here in the UK, have received £1.6 million to do research into the bio-medical side of ME.  Specifically they are trying to discover what causes the autonomic dysfunction in patients with ME.  Prof. Julia Newton is involved and from what I’ve gathered on forums she has a very good reputation.

I can’t work out exactly what’s happening here but from a discussion on Pheonix it looks as though this new research is a continuation of a sleep study done some time ago.

What’s interesting about this study is it seems to see ME and dysautonomia as linked. Prof. Newton is known for her work with POTsies. According to one comment on the Newcastle University page Ramsey in 1981 included orthostatic tachycardia as part of the ME diagnosis.

There’s a couple of aspects of this research that I am uncertain about – and therefore being cautious about. First of all there doesn’t seem to be a definite answer, that I can find, on the ME criteria they will use. One poster suggests separating out patients who fit the International Consensus dx and those who don’t.

Proper well targeted research into ME in the UK has been very thin on the ground. The bizarre insistence that patients have either made the disease up, brought it on ourselves or are depressed (and nothing else) has helped block funding and proper care for patients, especially in the UK, but elsewhere as well.

I am not an optimist. But I’m not a pessimist either. I do wonder, even hope, that as the “old school” people retire and die off, their egos in tact, that new research, that genuinely tries to find a suitable treatment, management and, hope of hope, a cure, could happen.

FMS/ME/POTS/Dysautonomia – remission.

I’ve been feeling better the last five days or so, and I have been enjoying the little oasis of having much much fewer symptoms, including much less pain. Lovely.

My BP is still unstable but my pulse and sats are so much better. In most chronic illnesses there is a pattern of remission and relapse. But in the system wide ones it’s a difficult thing to measure. I’ve noticed that many people get that few days of remission that is so welcome to us all; but others can go into almost or actually complete remission for months on end, and occasionally years.

As far as I know, there is no research on what causes remissions. We don’t know what causes them, why some people get good ones and others get little ones. We don’t know why some people only get partial remission and why some never get a remission.

Today, five days into my little oasis, the pain is back and my BP is shooting upwards again. Nevertheless my POTS is still in abeyance. I can stand up without blacking out or feeling sick, and my pulse is staying below 12o. Lovely stuff.

Back at the beginning of this disease (10 years) doctors told me quite clearly that it would all just go away. I believed them. They lied with the sure knowledge that they could do so. I am still astonished by the number of outright lies doctors feel able to tell patients.

This lie was a particularly mean one. After a while I began to feel better. I could manage a little more and the foggyness in my head was better. I thought I was getting better.  More and more symptoms began to lift and I was so happy because I thought I was about to get my old life back. I made plans about getting rid of the crutches and wheelchair. I couldn’t wait. So I pushed myself. Walk a little more, do a little more, keep it going. And of course I crashed.

Doctors shrugged it off or said I needed to try harder.

It took a while for me to learn that doctors should be ignored and never trusted. But I learned. Doctors should not get away with such lies, but as they do, it’s best to treat the things they say with extreme caution.

I now know the little remissions I get are not a sign I am getting better. But I am not made unhappy by this. Now that I know what I am fighting I can fight it realistically. The truth really does set you free. I can enjoy the oasis of remissions when I have them and they do mean I can get more done around the house.

Now I know some of you will be shouting at the computer at that sentence. I admit I do bring on a kind of boom and bust cycle because I use the remissions whether mini ones or pretty good ones like this has been, to do more. I know lots of advice saying pace carefully and keep remissions going, but I don’t know how long a good patch will last and in the bad patches which have been very bad indeed recently I don’t get nearly as much stuff done as I need. It has to be done sometimes – so remission moments are when I catch up. Does this shorten remissions? I don’t know – possibly. But there’s a balance to be had between trying to be less sick and trying to be a wife and mother.

I’ve read a lot of people’s stories over the years, especially more recently since I decided to get hold of the research and see what is happening out there. Lots of people have talked about losing friends and family because of how sick they were/are. For as long as I am able I will do the things that are part of being a wife and mother, especially a home educating mother. It’s important not to let the disease decide who I am.

(crashed this morning. Well it was good while it lasted 🙂 )

Dysautonomia POTS ME/cfs Fibromyalgia – Body thermastat is bust.

Here is a really good overview of some of the strange body temperature and other problems we face I note that a few people who suffer with the heat have bought cooling vests.

Living in the UK, it’s not often that heat is a real problem. But when it is – it is very difficult to stay cool. Having said that, for me (and others) being hot is never the issue. We sit in the bright warm sun of a Summers day, wrapped in a shawl and shivering like crazy. To say our body’s thermostat is bust, is an understatement!

However, beware! Sometimes you feel shivery and cold when in fact you are hot and wrapping up to get warm without checking your temp can lead to heat stroke, even if you are still shivering. I only learned this recently. It’s a good tip because I have been in the habit of wrapping up if I’m shivering.

But in the Winter my temp drops signficantly. This is not uncommon with this illness. Like most dysautonomia/FMS people my basic temp hovers around 96.6 to 97.1 F which is about 35.8 to 36 cel. So pretty low. I get very cold, very quickly and along with the lovely Reynaud’s phenomenon I get real problems with increased pain and confusion.

Here’s a tip I’ve found helpful. First of all invest in a good pair of arthritis thermal fingerless gloves. You can wear them under a normal pair of gloves for extra warmth. They are great at joint pain control and I have found they reduce the Reynaud’s which is great. The very ends of my fingers are more or less dead now, especially my right hand, and the Reynaud’s just makes things worse. But these gloves genuinely reduce the pain and white wrinkled fingers that Raynaud’s can produce.

The other thing I’ve found helps me a lot is having some nice shawls. Not good advice for the men I’m afraid.  But shawls are great. They go on easy, and when that heat wave hits, they come off, and go back on again as your temp drops so fast. I love my shawls. They also double as Montessori work rugs when required 🙂

You don’t need me to tell you to buy thermals. And ladies, those high waisted firm control panties – they help the nausea and the pooling as well as adding extra warmth.

Thick socks for warmer feet of course, and those ridiculous thick woolly animal slippers that come half way up your leg. I have overcome the children’s tendency to laugh at this by providing them with their own pairs.

Pace trials Pt 2: GET/CBT does more harm than good.

No sooner had I posted THIS with the great explanation vids when vid four was put up. So here it is. Take a five min break and watch this.

The explanations are so clear even I get it now. I have to say that since I’ve been more serious about reading research on ME/cfs FMS dysautonomia/POTS one thing has become very evident. That standard of a lot of stuff that gets published in peer reviewed journals is really pretty awful. Basic mistakes such as making assertions without any back up evidence, where only one or two authors are used as references and no mention of authors who came to different conclusions.  Imprecise language and over use of jargon. The list goes on. I have wondered sometimes if this is the standard of research and study that does get published, what on earth does the unpublished stuff look like?

Is this shambles over GET/CBT genuine incompetence or is it corruption?  Sadly, and very worryingly, it looks more and more like corruption.

(I think I may had muddled the vids in my foggy brain. However if you go to Youtube you can watch them all in the correct order. Sorry)