Tag Archives: fibromyalgia

Thinking and speaking and the major obstacle of the phone.

I lose my voice on a regular basis- in fact I have no voice right now – and my husband rather likes it. Cheeky divil! (as m’gran would say). Then there’s the entertaining aphasia in which dishwashers become fish-dishes and disappearing boxes as my dd so eloquently relates. Along with this are the times when the words are there and I can’t get them in the right order to make sense, or when someone is speaking to me and they sound like the parents in Humpf “blah blah blah”. I know they are saying real words but I just can’t make my head work out the meaning. This happens more often  and is much worse when I’m tired or when I’m on the phone.

I slur my words like a drunk and mix them up so I can speak like Yoda.

vintage-hollywood-LUCY-on-phoneAnd what is it with the phone? I think it must be that the only clues my brain is getting is spoken language, and because I can’t see the person speaking, it’s much harder to understand them. There are plenty of times when this isn’t a problem at all, but at other times I have to really concentrate hard to understand what someone is saying to me and sometimes I say something banal in reply because I just don’t really get it.

I am not sure why, but for long periods of time I can behave like a sane person (my children may disagree). I can enunciate and use the appropriate vocabulary for the occasion. I sometimes have the skills I had when I worked, taking messages, handing out complicated information (in two languages) and generally looking and sounding efficient. Then out of the blue – it’s all gone. Worse still, I can’t always tell beforehand that it has gone , so I’ll answer the phone and be struggling to make sense or understand the other person.  The fish-man can phone and I am struggling to remember what a fish is, let alone whether I want to order any.

My children are remarkably patient. My husband has a wicked sense of humour over it but that keeps it from getting too scary. I still tease him about the night he came home to find no dinner cooked and me unable to string a coherent word together, let alone a sentence. He looked at me with that face he does and said, “I’d better get a takeaway.”

I’ve got an appointment with a speech therapist in October. She’s supposed to be assessing me for some kind of larynx dysfunction. We’ll see what happens there.

THIS SITE on Dysautonomia has just been shown me. It’s pretty good, clear info on the joys of having this silly illness. All I would say is the advice about salt should be taken with extreme caution; salt is for people with neurally mediated hypotension and low blood volume which usually manifests with narrow pulse pressure. Those of us on the other end of the dysauto scale with hyperadrenergic stuff going on; hypertension; or like me rapidly fluctuating blood pressure, and wide pulse pressure (had one of 80 recently YIKES!) should not be taking salt. unless a doc has noticed sodium issues and that needs proper treatment anyway.

I do get salt cravings- I know this happens with other dysauto folks too. It is more likely due to electrolyte imbalance than a genuine need to grab the Marmite. Try Diaoralyte instead m’dears. (Marmite tastes better…)

Hospital Appt; interesting discussion on research and treatment.

There are times when having your nose into a fine piece of well controlled research can raise your hopes that answers are really out there. Reading something “famous” from the Lancet can soon remind us that much that gets published is so badly done, it beggars belief.

I’ve been reading and listening to lectures on the HPA axis for some time. It’s all very fascinating and the findings of people with dysautonomia and Fibromyalgia having problems with dopamine production, uptake and re-uptake all looks promising. But promising and having the promise fulfilled are two different things.

I saw the Prof today – a rare Cardiologist who can both dx and treat some of the heart related aspects of dysautonomia. The first very good thing I’ll say about him is he reads up what’s been happening so he knew what things were like before I went into the room. He knew I was on even more steroids and antibiotics (2 infections this time – lovely). He knew about the Respiratory Consultant and the tests I’ve just had. So, lots of time saved without me – in slurry, blurry mode having to try and explain things.

He looked at my BP/HR/Pulse pressure chart. I’m on the highest dose of Candasarten and Ivabradine already. But thanks to the complications that come with this, my HR is still over 100 a lot of the time and spiking up to 150 now and then. Not terrible and not as bad as it was, but still not right. So he’s decided to up the Ivabradine to 10mg BD. This is going well above the max and so we had a long wait in Pharmacy while they questioned him over it. I don’t think that’s a bad thing; having double checks especially for situations like this is a good safety measure.

We talked about the tests for dopamine because my tremor is really bad. But he agreed there was no treatment, and so the tests weren’t going to help me whatever they showed. I can live with this. If I know there’s no help for something, I can get my head around it and put up with it. The hyperadrenergic side of things is being indirectly treated anyway. He doesn’t mind that I read the research- which I appreciate.

I asked him about my weight as well. I eat twice a day (breakfast and dinner or lunch and dinner) and still my weight is creeping up. I’m also getting worse edema in my hands, feet, ankles and back of my legs. On bad days my knees swell up as well. He thinks a lot of the problem is the massive amount of steroids I’m having to take and until we can get around that, I’m in trouble.

So, I haven’t exactly come away with good news, but I do feel that I know where I stand with this shambles of a disease. I refused hospital admission last week because I knew there was nothing they could do extra in the hospital right now. My poor GP…but he agreed with me in the end.

The bottom line is this; I know what this disease is doing to me and I know that I have three good docs; my GP, Cardio and Respiratory docs and they are doing what can be done. After that I have to accept this. Sometimes it is overwhelming and I get a bit fed up – but having a doctor who accepts how bad it is and doesn’t try and play silly games can make all the difference.

It was lovely that Alex could take me as well. We could do some catching up. He’s a very happily married man :)

 

Lung Specialist appt.

images (1)Off we went to the Three Toilet Seats on the Hill, otherwise, more properly known as the QE. I saw The Respiratory Consultant who is a Colonel in Her Majesty’s Forces. I must admit to giving myself the “talk” before we went. The “talk” consists of quiet practicing in being able to stand up for myself and cope with rude, ignorant doctors who give a very good impression of having either never been to med school or to have slept through it, while contracting a serious case of Narcissistic Personality Disorder. So, I was ready.

He was very nice, polite, sensible, knowledgeable and respectful! It’s not just the Prof who is good at his job!

The Colonel allowed me to explain what had been happening and because he was listening he was able to spot some of the things I thought might be happening. He accepted my claim that some of the breathing problems are orthostatic, in that I am more breathless when upright – but not wheezing. He wasn’t fazed by IST and Dysautonomia.

I tried to explain the difference between the “obviously it’s asthma” stuff and the “what is that?” stuff. He picked up on it straight away and talked about the sounds made when the voice box isn’t allowing air through! He described the sounds and problem and that was spot on.

I’m to go back for more tests. At the QE I’ll have tests to look at chest muscle function. That’s interesting as it would touch on ME. I still want to ditch the dx of ME because of the politics around it, but if it is shown that my muscles are part of my breathing problems that plays into the biomedical evidence for ME. We’ll see what happens. He also wants to see what my diaphragm is up to. If it isn’t working properly that too ticks a bloomin’ ME box.

Meanwhile I am to be referred to a voice and speech specialist at East.  Let’s see what she makes of my voice, swallowing and talking problems. The Colonel obviously thinks she’s a good’un so I think I might allow myself some hope there.

My previous tests showed asthma and something else, not yet definable. But today my SATS were 99! I’ve NEVER had them that good before! It’s interesting to see that when I feel better that the easily testable things like SATS, BP and HR also look reasonable or even good. It should mean I can measure fairly easily when it’s going badly and when it’s going better. Whether this will make life easier with doctors I don’t know – but, God in His mercy seems to be allowing me to see some real doctors at last.

So, more tests, awaiting voice and speech appt and I’m to see the Prof and Lupus Rheumi next month. I do hope all this is leading to some answers. I feel like I moved forward knowing I have a form of Dysautonomia. I want to remind the Prof about the hyperadrenergic tests and then we’ll see.

I know there’s no cure, but I can’t help a little hope that I could function better than this.

Drug Juggler (pt II) and CfSAC testimonies for May 2013.

545749_454380617911565_1095774106_nA lot of people get to the point when they just wish they could ditch all the meds. I’ve seen people insist that their body will be able to deal with whatever is happening and self-fix. I wish that was true!

Too many people have bought into the superstition that “science knows all,” and “science will solve all.” This, much like the Cottingley Fairies doesn’t bare too close scrutiny. There are few doctors (my GP is a golden exception) who like patients reading the research. Many people think it’s because doctors like the mystique of looking like they know something we don’t. This may be so, but the more research and peer reviewed published papers I read, the more I think doctors don’t want us to read the stuff because so much of it is shockingly badly done! The standards for publication are so bad it makes me wonder if these papers are actually read by the “peers” who reveiw.

On top of that, diseases like ME and FMS are sucked into shoddy political situations meaning there is little to no research funding and then what is done is deliberately skewed to suit political ends. Science done honestly might have some answers, but vested interests, power grabs and pure corruption mitigate against this.

I do think you should read the research on the drugs the docs are telling you to take even if the research on your disease is difficult to wade through or judge.

inhalers; things you should think about. Even adults do better with a spacer or volumatic. If your doc hasn’t given you one, ask. I have a small one that fits in the bottom of my drug box. You sh

ould also have a peak flow metre and I recommend a pulse ox meter. I’ve had O2 Sats at 73 without really noticing the drop. I’ve mentioned before that steroid inhalers can have side effects, such as voice loss so drink water and gargle after use. If you are treatment resistant like me, most docs advise using Salbutamol inhaler regularly before the steroid. This is because it is supposed to relax the airways so that the next inhaler is better absorbed. (Montelukast can cause voice loss too apparently.)

Amitriptyline: Low doses of drugs like Amitrip or Nortrip have pr

oved very useful for the management of neuropathic pain. The side effects can be pretty yuk even at low doses. I’m on 50mg which is on the high side of low. To quote Dr, Patrick Woods whose research into FMS has shown the dysautonomic and hyperadrenal side of it (he sees FMS as a form of hyperadrenergic POTS) “wake up a fat zombie.” Yup, that’s about right I’m afraid. Add in steroids and you wake up a very fat zombie.  I have been fortunate in the zombie side hasn’t been too bad once I got used to the drug. Opiates on the other hand were horrible

Positivity is Not a Cure

and didn’t really help the pain that much either.

One of the other side effects of Amitrip is hypertension. At antidepressant doses (over 75mg) hypotension is more common, (at least it was among the depressed patients I nursed who were on antidepressant doses back then. Now Amtrip is rarely used for depression). It is likely that part of my hypert is drug induced because of Ami and the steroids.

One of the noted side effects of Ivabradine is hypotension which is why it isn’t prescribed for people with POTS and NMH (neurally mediated hypotension). Unfortunately for me the Ivabradine hasn’t produced this side effect. Typical!

The other commonly used drug is Gabapentin which, as the name implies, regulates gaba in the system. The drug has the added advantage of being an anticonvulsant. I haven’t changed to it as yet because so much else is going on and I haven’t had a seizure since last summer.

The other reason I haven’t changed is the Amitrip is working for me and it took a very long time for me to get pain levels to manageable.

Over the Counter stuff: I take CoQ10 and Magnesium.  A lot of studies have shown ME patients have low levels of both, hence the high number of heart failure deaths and poor immunity. It’s even hit the MSM

Maybe one day we will have access to drugs like Ampligen and Rituxin and actually get our lives back. Until then, we must mix our cocktails and get by.

Some reading: This excellent article Some Inconvenient Truths that shines and uncomfortable spotlight on the “Wessley School”.

THIS is a great overview of the Spring 2013 CFSAC meeting You can read Jenny Spotilla’s excellent and rather heart breaking testimony HERE as she shows a severe drop in funding for ME/cfs which is beyond shameful as more info is coming through showing how sick many people are, and how many are dying of this horrible disease.

Amy Squires Testimony

Jeanette Bermeister’s Testimony where she refused to use the term CFS (good for her) and speaks of how well she got thanks to Ampligen which the FDA have refused to licence for ME even in the light of recoveries (Bob Miller springs to mind)

Mary Dimmock’s testimony

Also READ THIS especially the quite frankly weird remarks by Dr Unger who thinks doctors are too dim to understand the CCC. WHAT? Even I understand it!

While a lot of what happens at CFSAC meetings are obviously American centric, it would be a mistake to think that those of us in other countries are not effected by what happens, and doesn’t happen, as a result of these meetings. Interestingly it was raised at the 2011 Nov meeting that Wessley, White et al were working for the Medical Insurance companies when they began their harmful campaign to label ME as some kind of somatosatation disorder, thus reanimating the corpse of Freud with all the nasties involved.

ME/cfs awareness month ends tomorrow. But the disease goes on.

Finally here is an amazingly good and easy to understand lecture on dysautonomia POTS, NMH etc from a biochemist who has hyperPOTS and NMS It’s nearly 2hrs long so I recommend watching it in bits. But you will learn a lot!

The vid maker and a discussion of the vid is found HERE at DINET

I am still awaiting tests for hyperPOTS to go with the IST.  As I’m already on Ivabradine I guess there’s no rush.

Autoimmune diseases on the rise rapidly. No one seems to know why and CFSAC meetings…

Reports have been bandied around for some time now showing that autoimmune diseases such as type 1 diabetes, Lupus,  and celiac are on the increase across the globe. Type 1 diabetes has increaed by 23% between 2001 and 2009.

Asthma is another disease that has not only increased rapidly over the last 30 years but according to Dr Gailen D. Marshall of CFSAC the complications of asthma are increasing. I am now one of those patients with steroid resistant asthma.  Those of us with this form of asthma are supposed to be rare, but “rare” is becoming common it seems. I have IST which is supposed to be “rare” but there’s a lot of us out there.

The usual “blame the patient” stuff is rolled out as “high salt diet” and “junk food” and “alcohol abuse” etc. gets bandied about, but this falls flat when you realise the increase is global and so that includes areas where such diets and lifestyles either aren’t there or aren’t even available. Not to mention the fact that most of us don’t tick those boxes anyway. It is a cause of irritation for me that when a history is taken and I don’t smoke, eat junk or abuse alcohol the view is that I can’t be ill then.

This goes along with the number of research outcomes that show an autoimmune aspect to ME. Whether ME is purely autoimmune or a nasty mix of stuff isn’t clear. It won’t be made clear in the foreseeable future thanks to the shameful lack of research funding but the clues are there.

I’ve been watching last years Youtube vids of the CFSAC meeting 2012 with a growing sense of despondency.  I am awaiting this years meeting vids to go up but going by some of the reports from those who attended, it may be better if I never watch them.

I am saddened by the same stories from patients told over and over which seem to be words aimed at walls not people. But the news that Dr Unger believes that the Canadian Definition of ME is too complicated for poor doctors who are “frightened by it’s complexity!” Seriously!!!

The call for the Canadian and International criteria to be made the criteria for the disease goes on.  It needs to happen. Thankfully the biomedical research is showing promise. It shows that excellent results can come even where there is so little funding.

The Drug Juggler (part 1)

The person who takes medicine must recover twice: once from the disease and once from the medicine.”

Dr William Osler

Drug smugglers might think life is hard on them, but drug jugglers are walking a high wire with no net.  When you have an illness that likes to open the door to all it’s friends and relations, you can soon find yourself on a shocking amount of medication. Chronic illness has a really nasty habit of inviting a whole sack load of pathogens to have a rave in your body. This means we need a ridiculous amount of medication as more co-morbidities set up residence and then the drugs we are given can have their own nasty side effects and open invitation to even more infection.  So drug juggling becomes a way of life.

P1020587Let’s take some of the symptoms that go with the Shambles dx of ME/Cfs + fibromyalgia + asthma + hypertension + dysautonomia IST. Which is what I have been stamped with so far. One of the major, and irritating symptoms is brain fog, and memory loss. That means juggling meds as to when and how to take them can be a bit challenging at times. Coupled with varying  vision there is a danger of accidents.

So organise the meds. Make sure you know what you are taking, how much and when.  You can buy those plastic boxes but they are sooo ugly and just scream “you’re a sickie!”  My oldest daughter bought my a glittery makeup bag some time ago but I’m on so much more stuff these days it wasn’t able to hold it all.

So I have bought a makeup box. Don’t laugh – this is something you can carry around without

P1020589

it being obvious you are taking a truck load of drugs. It holds everything including the arthritis gloves and bandages for bad pain days. It’s kind of “drugs in style”.

Knowing you can just take what you need even with the worst possible brain fog is good.

Something like this box is ideal. The bottom layer will hold boxes of drugs you aren’t using right now, and things like arthritis gloves and bandages. The middle layer will hold inhalers, and/or morning and afternoon meds  and the little top boxes will hold (in this case) six nights worth of meds.

The other thing I am going to do is have a list of meds on a sheet with a list of dx and you should add sensitivities and allergies too.  This will make things a lot easier if you get shipped off to hospital.  The last time I was in an ambulance I found it really difficult going through it all with the paramedic as I just wasn’t very with it at the time. If you have it all written down that will cover all eventualities.

Side Effects

Another quote from the redoubtable Dr. Osler

One of the first duties of the physician is to educate the masses not to take medicine.”

We live in a strange culture that sees any kind of suffering or illness as something to be medicated to death. Every winter, certain over the counter meds get advertised on TV in such a way that is laughably inaccurate (how it’s allowed I don’t know). Got flu? Take this magic snake oil and return to work the next day!  This patently false advertising gives the impression that if you feel ill, there’s an immediate cure out there. Well, folks, there isn’t.

Taking medication should be done only when you really have to. All meds have side effects. For those of us with a nice complicated set of chronic illness there seems to be a bent towards drug sensitivity. This means you need a patient doctor who will do some trial and error.

Take hypertension; there’s a number of drugs I’m on or have to take on a regular basis that actually increase BP. However I’m also on drugs that are supposed to lower it. The wild fluctuations I have in BP are more likely ANS related than drug related but there’s still some chance the drugs are up to no good. That’s one of the challenges; working out what is making the symptoms, the diseases or the drugs?

Steroids can cause hypertension and batter your immune system leaving you open to all sorts of opportunistic infection. The fact that so many of us who need steroids already have poorly functioning immune systems doesn’t help.

You really do need a good, trustworthy, sensible doctor to help you tiptoe through this minefield. Be aware of what your meds do and what they might do that you don’t want them to do. I am on antibiotics more often because I’m on steroids so often. I will discuss ways of coping without steroids for periods of time so I don’t have to have quite so many infections.

Oral steroids are the worst offenders (Prednisolone is my poison) but I am on inhaled steroids too. Don’t forget that they too have side effects. I frequently loose my voice for example. Some of that is the disease and some of it is inhaled steroids. If you inhale Seretide or one of the other steroids make sure you gargle and rinse afterwards. It might to help, but it might avoid some voice problems.

Recent research suggests that Vit D could help even steroid resistant asthmatics. However, the media is always grossly simplistic in it’s reporting. First of all Vit D supplements vary humungously. Also you need Vit A to process Vit D and you need exactly the right amount of Vit A to process Vit D. What isn’t clear as yet, is whether we are lacking Vit D or unable to properly process it. Vit D deficiency is found in ME patients too; still lots of unanswered questions, but interesting progress.

That’ll do for now.

In gratitude for family and friends.

Psalm 88 comes up often at Compline in which the psalmist faces his ill health and gives God a bit of telling off. One line stands out as, because of how sick he is he says, “You have taken my friends away from me, and made me repulsive in their sight. I am confined and cannot escape.” (Ps 88:8).

Go to any place on the internet where people speak of their experiences of serious chronic illness – especially not so well understood ones like fibromyalgia, ME (cfs) or dysautonomic disease like PoTs, IST and all the rest that goes with them, and you’ll see the same stories over and over. So many people tell of how friends and family not only abandoned them, but actually humiliated them over how sick they were.

The most common idiot thing to say is “But you don’t look sick.” WHAT does sick have to look like? I mean, most of us exhibit all sorts of weird “sick” signs. Perhaps the fact that I twitch and jerk randomly, have colour changing body parts; have lost the skill to both move and breathe at the same time, and of course there’s the in-yer-eejit-face wheelchair, has prevented most daft comments (Doctors are another species so I don’t count the bizarre and inhuman things they say).

Story after story in which the person struggling with the disease that has stripped so much of their life away, has to face being rejected, taunted and ridiculed by their own family and friends. What on earth is going on?

Many people lay the blame at the feet of doctors who have been rude and dismissive; which should be a matter of deep shame to medics, but isn’t. Family members still stuck in the idea that “doctor knows best” then feel permission has been given to behave in the same way and so the nastiness spreads. Then there’s the ability to wiggle off the hook of having to love and care for another person. I am sure not wanting to feel responsible makes a lot of people cruel.

Having a chronic disease is a bloomin’difficult business. It’s bad enough when support isn’t there when it’s needed, but to be actively abused for being ill has got to be the worst possible experience.  THIS BLOG POST sums up what it’s been like for way too many people. Research from a couple of years ago shows that one in ten suicides are because of chronic illness – but read any post by someone feeling suicidal with chronic illness and almost always it’s nothing to do with how sick they are, but how others are treating them.

I am so grateful that I haven’t been through the level of rejection and stupid behaviour that so many others out there speak of. I’ve lost a couple of fair weather friends and family, but most people have been fine with me and very supportive.

I am quite sure plenty of people in my life have no idea, or only a vague notion, what chronic illness does to me, but I don’t mind that. Why should they have to understand it? But no one has been cruel or unkind to me, thank God.

Like nearly all FMS/ME/Dysautonomia patients I’ve faced a barrage of rude, arrogant and downright nasty medics. That’s more than enough to cope with thank you very much. I don’t need more. I don’t get why people feel the need to dismiss the suffering of others. What’s that about exactly? 

Ten years into this hideous set of illnesses I’d be very tempted to use rude words in response to someone who tried to pour salt on my wounds.

My oldest children have been brilliant right from the beginning of this. They’ve had to contend with a lot from me and deal with their younger sister being extremely ill for the first three years of her life too.

I am very grateful that I have good Christian people around me who have a good Christian attitude to life.

b213-thank-you-cheery-lynn-doily-die-4674-pSo to all you friends and family who have never said “But you don’t look sick” or “You should try and get out more,” or “Have you heard of so-n-so the brave cripple..” or “have you tried this miracle cure?” or  whatever other useless, unhelpful thing,  I just want to say THANK YOU.

ME/Cfs, Fibromyalgia, Multiple Chemical Sensitivies, Gulf War Syndrome AWARENESS DAY

62608_351128568321966_500473882_nMay is the month for raising awareness of all sorts of so-called “invisible illnesses.” I’ve said before what I think of people who can’t see another persons’s cross. Not seeing it, doesn’t make it invisible.  The fact that these awareness campaigns are needed irritates me. But hey ce la vie. It’s what Douglas Adams referred to as “Somebody Else’s Problem” the SEP field that made someone invisable.

The one disease that I’ve been thinking about recently is Gulf War Syndrome. The name is a silly label covering the diseases presented, originally, by solders coming back from the Gulf War. I don’t know as much about this illness as I would like to. Like ME it is riddled with controvesy and obvious vested interests. The needs of the sick veterons got kicked way down the priority list.

But one of the good things about injustice, is that it always bites the handler in the end. Meanwhile people with a mixture of serious illnessnes are getting together, supporting one another and pooling resources so that even if there isn’t much research, what there is, can be worth while. These days there is quite a bit of research and a good deal of it is of high quality. (There’s still an astonishing amount of shoddy work being published but the good stuff shines).

Today an International effort is being made by the sick who are well enough and by carers and even some researchers to get some answers. Protests are being organised from Australia and around the world demanding better funding. I’ll never forget reading that in the UK more money is spent researching hayfever than ME.

But groups are getting together and thanks to the massive number of comoribidies that we all seem to have; dysautonomic disorders, gut disorders, bizarre cancers, heart failure… and so on, the more research can be pooled to help us the better.

A number of different paths are being trodden in research and they are proving interesting and hopeful. Anti viral meds are still being tested but for a subset of ME patients in particular they are showing great promise. Sadly, gettingt the FDA to move quickly on this has been impossible. More people are dying while paper is being pushed around with unforgivable slowness.

Cardiomyopathy and cardiac insufficiency theories are looking good for another subset of patients who (if they can get tested) often show mitochondrial dysfunction. When the heart at mito level can’t contain oxygen properly this affects the whole body. It’s a form of heart failure that’s difficult to diagnose (unfortunately) but as heart failure is the leading cause of death in ME, it’s a side of the disease that needs urgent attention.

Research from many chronic diseases including Multiple sclerosis has overlapped with some ME and fibro research showing the ubiquitous Epstein Barr Virus may be the door opener for the diseases. Patients are tested positive for reactivation antibodies and so many of us have a history of more than one serious case of Glandular Fever that this virus is looking good for the root of a lot of our problems. It’s also implicated in Lupus.

Theres good research into methylation and some into endrochronological aspects of our disease.

A lot of time and money has been lost (stolen even) but we can work together  and make up for all of that.  It is my personal opinion that the reason diseases such as HIV/Aids have received the funding and research needed was that those who became HIV+ in the ’80s were actually well enough to fight the astonishingly bad reaction from the CDC. It also helped – sadly- that some famous people died of AIDS.

People with ME and other similar diseases are very sick right from the start. Even those on the less severe end of the scale suffer serious brain fog, confusion and of course the hideous PEM (post exceptional malaise). The people who die of ME tend to be “ordinary” and therefore not high profile enough to galvanise those in power.

Perhaps there won’t be answers in my life time. But I pray to God, they will be answers. Join me in that prayer.

 

Against the “who sinned” approach to ME/cfs and fibromyalgia.(or any disease for that matter)

I heard a doctor of some description on the radio say that the reason so many people have diseases like Fibromyalgia and ME/cfs is because we are angry and unforgiving people. He didn’t back his extraordinary claim with any research, but he put it out there as if it went without saying. When asked if something like scholiosis could be caused in the same way, he didn’t think so; but didn’t explain why.

What I will call neofreudianism is causing a great deal of damage in the care of people with all kinds of chronic illness. it’s psychobabble with no empirical scientific value at all; but much loved in political circles. It is simply unethical and has caused terrible damage to the proper funding of research and the proper care of patients with these diseases. Patients are being denied tests and treatment as well as facing shockingly poor behaviour from medics and it all seems to be hooked on the politically motivated approach to trying to undermine the seriousness and reality of the diseases. It’s only relatively recently that the CDC have admitted that ME is a serious life threatening, life shortening disease.

There is, thank God, a growing body of research that shows the biological roots of FMS and ME and some excellent work on comorbidities. We are seeing FMS more tightly linked with autonomic dysfunction and adrenal dysfunction. Most of us have at least one dysautonomic dx such as some form of POTS and/or IST with other orthostatic disorders.

ME patients are shown to have all sorts of nasty viruses as well as MAST Cell, EDS and Mitochondrial disorders.

There is a growing number of us being dx with Lupus, Lymes and other serious disorders to go along with the already hideous  problems we face.

Despite all this, most of the people I know with FMS/ME/POTS/etc etc. are happy, well balanced and forgiving people. The fact is many many of us have faced the need to forgive (mainly neurologists) since becoming ill. The anger, resentment and sadness I’ve seen expressed as come as a RESULT of being so ill and the horrible behaviour of others towards us just because we’re ill. I don’t know anyone who became ill because they were angry with someone.

I do know someone who carries a lot of anger and isolation who has scholiosis. I don’t for a minute assume her illness was caused by her anger. There is no evidence to support such an idea.

It is bad enough being chronically ill, coupled with a shocking lack of well funded honest research, without having someone who patently knows nothing about the illnesses spouting misinformation on the radio.

How could FMS or ME be a result of anger and unforgiveness when it occurs in clusters. More nurses get it on average – are we a more angry bunch? It’s ridiculous to try and tar us with this brush. 

I have emailed Catholic Answers and asked for a retraction on air. I hope they do this. I do love Catholic Answers; it’s a well put together and usually very honest and accurate program. This is a one off hopefully and one that I pray wont be repeated.

It is not because we are a bunch of angry unforgiving grudge bearers that we are so ill. We just have a disease, like other sick people. We should be treated with the same respect.

Where did my spoons go?

I had a few spoons and now I don’t seem to be able to find them. Perhaps they designallare under the bed. I told my chiropractor that I was tough, and honestly I think I must be, cuz right now I feel like I am getting through a day clutching a single teaspoon. I think it should count as a proof for the existence of God; the fact that I am spoonless and coping. It’s one of those missing verses from Scripture “Amen, I say to you, though you have only a rusty teaspoon, I will give you spoons,” And He does.

If I sit still I can breathe and feel pretty ok – but it’s not a particularly useful way to be. As soon as I start moving around I become breathless, and cough like an old woman who just gave up smoking. My voice comes and goes rather randomly. I am sprouting a rather picturesque butterfly rash across by already puffy face, and my legs are doing their own Dulux advert in shades of white then blue then purple.

I have terry’s nails and mild beau lines. I find this a fascinating “sign” as it must be how doctors could dx patients before the massive over-reliance on machines began. I can’t help wondering sometimes if those medieval monks had a better understanding of sickness and sick people than our modern machine-obsessed medics.

My pain levels are pretty good.; thanks to Amitriptyline (50mg) and the chiropractor. Amitriptyline is prescribed “off label” for all sorts of chronic pain including migraine and back pain. It is prescribed at less than the therapeutic dose for depression (it’s on label use; although hardly any newly dx people with depression would get this as there are new antidepressants to choose from). The max dose for pain is 75mg usually.  It doesn’t kill the pain completely but the side effects are nasty so you don’t want to be on a higher dose unless the amount of pain outstrips the side effects. 50 mg for me keeps a reasonable balance. I have confessed on here before that I also take pink migreleve. This is only in times of definite necessity as Migreleve and Amipriptyline are contra-indicated. I never take them at the same time; and always leave a few hours from one to the other. As I already have had seizures I’m not in the business of inviting more.

I do believe that if you can get pain under control, it’s much easier to cope with eveything else. If you are facing a wall of symptoms and don’t know where to start – I suggest you start with pain management and control.

Since the meds adjustment (candesarten) my blood pressure is under better control.  My heart rate is better as well. So all those drugs I swallow each day are doing something. I’m taking CoQ10 and Magnesium to help boost it all.

The Cardiac Insuffiency theory of ME/Cfs suggests that lack of CoQ10 could be at the root of the heart failure problems in so many patients. Bloods taken from those lucky few to test this come back with low CoQ10 and show mitochondrial dysfunction as well

I am needing to sit up at night so I am using a V shaped pillow. These are great to support you (got it for breastfeeding originally) and help prevent sliding down the bed too often with the waking up gasping for air bit.

Bloods taken to check for renal and heart failure.  I intend to ask for ANAs to be done soon.

Meanwhile I shall clutch my teaspoon and carry on. I have a spoon (sometimes) and I’m not afraid to use it.

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.

photo-from-we-campaign-for-meThere 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.

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.

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.

759870E8D080C63EE0401BAC7101193D-c1I’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.

tumblr_mgec2rM1rj1rzwmx5o1_500I 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

Fibromyalgia/ME/POTs and OI with hypertension, seizures etc. and things that help coping.

Before term starts I just wanted to write a couple of how-to-cope posts with these diseases.

Living in the UK, my chances of any in depth tests and medical help are so low as to be vanishing. After facing lots of misinformation, dishonesty and bold face lies from medics the first coping strategy I recommend is READ THE RESEARCH.

Ignorance is not bliss and even though most doctors can’t stand patients who know anything about their own illness, you need to know because they don’t. Be warned; you must use your information with caution. First of all, there’s some astonishingly shoddy pieces of research out there, so be careful what you follow. I’m sorry to say, it’s a minefield out there. A lot of research is not aimed at trying to find answers that will help sick people, it’s …well, frankly it’s difficult to tell what some of it’s for at all.

I have found Phoenix Rising a useful place to get not only the research but some good analysis of it too. It’s not the only place for good research articles but it’s easy to find a lot on one place.

Let’s take a look at some of the symptoms and handling them.

PAIN.

For many, if not most of us with fibromyalgia and/or ME this is one of the worst symptoms and the most difficult to manage. For me at least it’s been worse than the fatigue and a massive contributing factor to fatigue. There are some good meds out there, but each person is different and there is a certain amount of trial and error. Many people with ME in particular have sensitivities to drugs so read the more unusual

I am using Amitriptyline. There’s now some evidence that this works better for those of us with Fibro based pain as it has a good effect on mast cell disorders and there’s some evidence that FM might be a mast cell disorder.

I also recommend gloves and splints used for arthritis. Even an elastic bandage has been useful for me.

Things like those microwave lavender bags can help with mild pain – but to be honest I don’t think many of us with FM/ME based pain get the mild sort.

Often the pain will dictate what you can do. I have a sort of routine for getting out of bed where I wait until I can get my feet on the floor and then slowly put weight on them, then push up through knees and so on. There’s no point me saying “take your time” as your body wont allow you to anything else.

Pain can be a terribly difficult thing to get on top of. Many of us have used a chiropractor and/or an osteopath. Sadly the NHS doesn’t offer good pain management.

A lot of people have dark glasses for eye pain – mine are transission lenses which while more expensive has saved me money on drugs!

Ear plugs help for sound sensitivity.

POTS/OI

This affects us in different ways. Most people with POTS and OI will have tachycardia and hypotension. But there’s a significant number of us whose blood pressure pumps the other way; hypertension.

My system for coping with this is I sit for a lot of activities. Now, it would be better tachycardia wise if I lay down – but it’s not so good for my breathing or practical with the children. If you can lie down to get your pulse to something nearer normal, then do it.

For standing stuff. I take my pulse as I feel it getting higher. Once it’s over 130 I sit down. If I leave it to reach 140-145 I get too nauseous and pre-synocope and that’s just unpleasant. I can usually sit for a few minutes and my pulse will drop to 120 and then I can carry on. Cooking takes longer and I have to do it earlier in the day – mid afternoon for me, to make sure I can actually do it.

You will probably find a best time of day too. For some it’s the morning and some even manage to cook at a normal evening time.

I cook less fussy to prepare food these days – oven baked or slow cooker.

Shower – choose a time of day you can cope. I think a chair or seat in shower is a good idea if you can get one. We haven’t reached that point yet. I do make sure I have been sat down a while first. So far this has worked.

SEIZURES

These are a fairly new symptom for me so I’m not up on all the coping strategies. However I am learning. First, listen to your body. I get an aura and other warning signs. When I had the first ones and had a paramedic called she warned me not to fight them as it makes them worse. I discovered yesterday that this is very true.

Mine are apparently caused by low grade fever and infection. (Hence I’m back on antibios and steroids). I haven’t quite worked out what to do yet, but I think the fact that I have good idea what causes them means I need to get all infections treated asap. In the past I would wait until the infection was really obvious. Can’t be doing that now.

I have another appt with the GP on Thursday and we’re going to discuss stuff. She doesn’t think Gaberpentin or Pregabalin would help as it’s not “epilepsy” it’s a seizure disorder caused by infection and fever. However a couple of folks from Phoenix have recommended an on hand dose of Klonopin. I will ask about it and let you know.

My daughter is complaining that the house is cold as I keep opening doors and windows so that I can’t get too hot! LOL.

This piece of research is all I’ve found on bactierial infection and seizures

Frankly if I’m going to have these diseases and a blog I may as well try and write something of some use. Hope it is of some use to someone sometime.

Just in case you were wondering – what happens with FM/ME…

This will take just a little more than 4 minutes of your time and took the very ill maker just over four months of her life.

And it breaks my heart that so many children and teens have this truly hideous disease. But it is heart warming to see that talent isn’t dimmed.

Please spend another 5 minutes watching this vid made by a 13 year old. You may think the photos are unimportant, but if you look…you will see.

I cannot begin to tell you how horrible this disease it, or how much I utterly hate it. But there is some light and these vids shine it.

Adventures in Fibromyalgia; lung specialist.

Saw the lung specialist yesterday. I was hoping that was it until the epilepsy clinic in October, but he wants me back in three to four weeks for tests.

As I’ve been feeling fine in the ol’lung department recently – haven’t needed prednisoline since April which for me is pretty good going.

Doc gave me a peak flow meter which I am to use twice  day for two weeks and post the results to him.  It’s interesting to get a baseline of what my lungs are up to when I’m feeling relatively fine. So far I’m hitting between 360 to 380 which isn’t that bad.

My sats hovered between 93 and 94 which isn’t that great but isn’t as bad as they’ve been in the near past (tended to be 86-88). So the drugs must be working reasonably well.

ME/CFS and FM – the Ampligen question.

I am STILL reading my way through Osler’s Web and it’s still very good and worth the effort of me reading it. I am in awe of Hillary Johnson for the sheer care, time and work that she put into this ten year overview of the crisis in care and treatment for people with ME misnamed Chronic Fatigue Syndrome.

One of the threads throughout the book is the story of the Amligen trials. It’s a story that is still going on today. Patient’s from the severe end of CFS were chosen to do the trial and all patients have to stop taking any other medication they were on for the duration of the trial. Half were given Amligen via IV and half received saline.  Remember these patients were so ill they either used a wheelchair, were more or less housebound or were unable to get out of bed most days.

As the trial went on those on saline became much sicker and 4 patients, unable to cope any longer committed suicide. I cannot begin to describe what it’s like to be that ill – and for them to be trying to survive with no meds, is unbelievably difficult.

Meanwhile those on Ampligen were improving all the time and the side effects had proved marginal in all but one case, and even she requested to continue the trial because she was getting better.

It was going so well that the drug company and researchers thought they could end it early and go to the FDA with what they had, as it was already showing better results than drugs that had so quickly been approved for HIV and AIDS patients.  So the drug was stopped.

And those who had been so much better, out and about, cognitively functioning and no longer needing their wheelchairs, relapsed within three months.

The drug was not approved.

The fight goes on as more and more people lose everything to this illness and more and more people die of it.  The myths are still circulated, but thankfully are answered by those who have spent the time finding out the truth about this.

More recently Rituximab is also going through trials and showing some promise. Let’s hope and pray that even if those of us ill now will never see treatment let along a cure, at least the next generation can hope for a better deal.

 

ME/CFS and FM awareness day

It’s the awareness day today. I’m too tired to blog on this right now, but I note that Nonna had a little poster about how today is also Florence Nightingale’s birthday and that her symptoms were very much like ME. This fascinated me because I had wondered about that when I read her life story.

I’ll try and blog on this soon….

In the meantime, please pray for all with these debilitating and medically ignored diseases.

Had my EEG today.

Today’s hospital appointment is the last one for the time being. Still awaiting the Lung Specialist, but apparently the waiting list is very long indeed.

Anyway today it was the EEG. Interestingly (to me anyway) the myoclonus has calmed down a bit over the last few days and so I wondered if the fact I’ve been back on Prednisolone might have anything to do with that, or whether it was just coincidence. The eeg-man (who probably has a proper title, sorry) said he wasn’t sure, but it was possible that if the twitching, jerking, absences and general weirdness is to do with some sort of inflammation, then steroids could possibly calm that down. Interesting.

I was duly wired up. The way it works is I parked up the wheelchair with a little box on a stand behind me. From the box came all the lovely coloured wires. These were attached to my head with stickers and gel which included a wire stuck to each collar-bone area. Not sure what they were for. Nothing too uncomfortable.

There was a camara pointed at me.

Once I was wired and properly facing the camera the test began. I had to just sit there, eyes open, then shut, then open and so on. That was ok, although keeping my eyes shut was weird as my body started twitching – not something I had expected. Don’t know what that’s supposed to mean.

The next bit involved looking into a bright flashing light, eyes open and shut. It was pretty unpleasant. He did say I could stop him but I decided to keep going. At the point where I thought the nausea was more than I could politely manage the thing finished! Thank heavens for that!

That was it. No idea how long before I get to hear of results but the next epilepsy clinic appt isn’t until October so I am guessing I have to wait 6 months (Ah the NHS).

I’ve had a look at a couple of epilepsy sites to see what I can hope for especially if (as always seems to happen) they can’t see anything on it or as happens even more often they simply lose the thing. Unfortunately it seems that EEGs are not as useful as I’d hoped. So many people have clear ones even at the point of grand mall seizures. This is not what I wanted to read.

For ten years I have handled all the “there’s nothing in the results” from doctors and I’ve coped with FM and all it’s extras reasonably well. During the major flare two years ago I realised that even in a serious state of illness like then, there is no medical support for this disease.  I started to read the research myself and find my own way through, learning to accept that I am getting worse and that I wont ever get better (unless God offers me a miracle). I have managed that. I have been extraordinarily blessed that I have never had to deal with depression or anxiety about any of this. I have been frustrated and angry at times and I have lost what little faith I ever had in the medical profession as a whole – with one or two exceptions, but I think a bit of anger and frustration helps the fight, whereas I think depression must make it so much harder to deal with.

But this business is proving a real challenge to my keep-b%$%^ing-on (as Churchill signed all his letters) approach to life and this disease. I just can’t stand the idea that I will be having these weird jerks and twitches in public. The idea that I will be left with them, and that they will have to get a lot worse until I’m having full fits before there’s a hope of treatment is terrifying frankly. Seeing the number of people left to suffer just because the machine hasn’t spotted the problem is deeply disturbing. So many good doctors and researchers have spoken out against a machine based approach to medicine. Patients are human beings not mere machines, and we know our own bodies.

I am not saying I wont carry this cross if God sends it. Obviouly I will. But I can’t help a little hope that the doc will say, “The results show you have this…” and then “And we have a great treatment for that…” or better yet, “And we can stop it happening.”

Doctors – not all bad, but modern medicine has massive holes in it.

I have seen more than my fair share of doctors over the last ten years or so, and very often I have been astonished by just how awful many of them are. But the last couple of appointments show that things don’t have to be that way.

My GP surgery is very good, and as I’m quick enough to blog when I get cross with doctors, I should be equally quick to be thankful. On Thursday, having spent three or so days struggling with my breathing I decided I’d had enough and phoned the surgery, “Can I just pop in and use the nebulizer?” I asked expecting to have to jump through many a bureaucratic NHS hoop. But no, the receptionist said she would inform the duty doc I was on the way.

I got there about 20 minutes later and was taken straight through to the room and plugged into the nebuliser within a couple of minutes! I then saw the doc who gave me a script for steroids and other stuff, and so I can now breath nicely again. Lovely.

I had an appointment with the Rheumi at the hospital today. I do try and avoid mentioning FM when I see doctors now, but as FM comes under Rheumi it’s difficult to avoid. She did immediately ask if I’d had pychi referrals for the FM. I said no, as I am not depressed (thankfully) She then mentioned GET and CBT as having good outcomes. Actually it doesn’t, but I didn’t mention I’d read all that research. She was a good doc though, and did listen to what I said and did a good examination.

The consultant came in at the end and asked me where I wanted to go with this problem from here. I explained that I was managing it fine and that as I am well aware it isn’t getting better, and is getting worse, and as he pointed out there isn’t much in the way of medical support for it, that I can continue to do that. “My body is doing this and I can’t do much about it,” I said, “I just get on with life and accept this is how it is.” I think I’ve known for a long time now that there is nothing doctors can dare to do to help those people with fibromyalgia, or ME (CFS/CFIDS).

Machines might be big, white and expensive, but they are extremely limited and this is before the limitations of busy (and often poorly trained) doctors get hold of them.

Ignorance prevails and even though the two doctors who spoke with me today were both polite, good people, they are hampered by the politics, money and amazing egos of those who could  help, but are too arrogant and have blocked any hope of proper care and treatment, let alone a cure for fibro.

As I jump through the hoops I know I am facing an eventual joint dx of FM and ME. I will resist to the end. Sadly having a dx of either FM or ME let alone both is simply a ticket to nowhere useful. Sixteen years after the publication of Osler’s Web (which I must review) we are not much further forward in even gaining basic respect for patients. Until there is a massive change in attitude, egos, politics and financial mismanagement, people with ME/cfs and FM are going to be left not just seriously ill,  and dying, but treated with utter disdain.

I am grateful for the hard work and genuine care of the doctors I’ve seen the last couple of times. Their good professional approach does not cost more than the rude approach; and it can made a difference to how the patient feels about the medical hoops we are told to jump through and the horrible personal costs of the disease we battle every day.

A bit about Fibromyalgia research, FM and it’s hanger ons.

A fairly new and quite interesting piece of research suggests that people with fibromyalgia have a higher propensity to a genetic copied gene A1AT (alpha 1) that may be one of the factors contributing to FM. 38% of FM patients had the copy compared to 13% of patients with other neuro illnesses.

I am interested in this genetic mutation’s role in lung disease. At this stage in my own illness my lung disease level is very high (and my heart isn’t great either).  I’m still awaiting the results of the cardiac ultra sound which I assume means the results have gone missing. Meanwhile the waiting list for the lung specialist is so long the GP has me on all the meds needed to keep going until I finally get to see him. (Thankfully I have a good GP). He has taken me off a couple of inhalers and replaced them with seretide and montelukest (and Ventolin). This is stage IV care, so I’m getting what I need until I get to see the specialist. I am still infection free so that’s a massive improvement as I was having chest infections on a 6 to 8 weekly basis since last August. Must admit the Montelukest has some unpleasant side effects but I am hoping they will fade as I get used to it.

Just had a tentative dx of myoclonus from the doc at the Epilepsy clinic. He doesn’t think I have epilepsy, mainly because I don’t lose consciousness I think. Anyway have to have an EEG, so waiting for that appt and then he will see me in six months or so. I forgot to ask what I was supposed to do about the jerking and stuff, but I googled it and find that FM’s old friend magnesium is supposed to help as is calcium. So I’ll have to get back onto that.

This is an interesting little article that looks at how people will delay seeking medical help and dx for fibromyalgia because of fear of how they will be perceived and treated. It is very much behind my refusal to have a dx of ME. I don’t for one moment believe that having a dual dx will help me at all.

Austism, ME and how history doesn’t stop repetitive harmful mistakes.

After posting about World Autism Day yesterday, and wondering when some descent funding for proper research might happen, my oldest informed me he had read that in France they treat austim with psychoanlysis. In all honesty I believed he had read this as black humour April’s Fool’s joke. But then I googled it. Ye gods. It seems it’s true. (not just because the NYT says so obviously).

The history of medicine is packed with this sort of shameful assumption. There was a time when people with diabetes were told they had a mental illness, as were those with multiple sclerosis. It took a lot of money and research and of course tip-toeing around monstrous egos before the truth came out.

At least, in American and the UK (I’ve no idea about other countries) autism is known to be neurological. There are behavioural aspects that can be helped with behavioural training, but there is no way you can psychoanalyse your way out of autism. I was even more appalled to see that mothers were blamed for their children’s autism (The video isn’t available; can’t think why). This is just another flavour of the utterly discredited dx munchhausen’s by proxy.

The fact that Freud still has such a hold on PA in France is nothing to be proud of. The wise Victor Frankl moved away from Freudianism very early, having received some training from Freud himself.

Here in the UK people with a dx of ME/CFS are treated as having a mental illness. Well, no, actually they are not. They are treated as having a fake illness that’s “in yer ‘ead” and they should pull themselves together with exercise (because they are lazy) and Cognitive Behavioural Therapy (becuase they like being ill and need to change that). All the research that shows this is wrong and doesn’t work, and worse still harms patients, is ignored. All the research that shows immune deficiny on a massive scale and neurological results in high res MRI and spinal fliud analysis is roundly ignored. Meanwhile studies show that many ME patients are too ill to get medical help- and we are too enlightened to actually go to the patient in this country. I would like to believe that the death of Emily Collingridge might be the thing to change that.

I read many people saying that one day the medical profession will look back on it’s behaviour towards those with ME/CFS/FM and autism and be ashamed. But I don’t think so. (I’ve grown cynical) I have never heard a medic mention the shame of treating diabetics, MS patients or other people as mentally ill when they were not. Nor have I ever heard or read of a medic that recognises that while people with serious illnesses are told it’s “just” a mental illness, that this undermines the seriousness with which real mental illness needs to be treated.

 

Another death thanks to ME.

I am still reading Osler’s Web which I highly recommend. It is a massive, well researched tome that should have changed the way medics behave towards people who are desperately ill. It hasn’t and it also hasn’t forced more research.

And so while those who could do something don’t and while ignorance leads to maliciousness yet another young person dies thanks to ME.

And my GP – who is one of the good’uns- wonders why I am so firmly resistant to a dx of ME.

May God recieve her and may she rest in peace and may He pour out His comfort on those who mourn.

Short reprieve on the ME dx

While my view of doctors in general is probably not publishable, I have to say I am increasingly willing to trust my GP. I am still a little wary, but I have to be honest and say, he seems to be truly trying to work out what’s happening with me and he’s being very thorough and fair in doing so.

So, there I was this morning. He had phoned me at home just after I saw him last week – and that in itself shows genuine care as I hardly ever hear of GPs willing to do that – and told me to make this appointment, and so I did.

He has referred me to a lung specialist. No cardiac ultra sound results yet.

But todays appointment was to discuss the possibility of me having ME. I dread that disease. After some discussion we agreed that my difficulties with breathing are (at this time) the number one symptom. But as some of the pain I have in the joints, particularly my hands and ankles with the night swelling that often comes with it (oh the joy of fat ankles and sausage fingers) he wants to send me to a rheumi to check out the possibility of Rheumatoid Arthritis. He isn’t that convinced that is the answer – I think he’s more sure it’s ME – but at least that dx is postponed. Not that a dx of RA is wonderful – but…

He added more things for them to take blood for when I go in a couple of weeks. They’ll be taking an arm full at this rate! LOL.

So , bloods, new inhaler, see him again in three weeks, referrals to rheumi and Lung specialist and hopefully get the ultra sound results at some point in all that. Please keep me in your prayers folks and add a prayer for my GP that he can find an answer.

It’s doing Lent time :)