Category Archives: Fibromyalgia

Hospital Appointment – larynx/throat speech specialist

I’m sorry to write two medical posts one after the other but I had my hospital appt yesterday and thought I’d tell y’all about it.

I saw a speech cum throat- especially larynx specialist. I had been referred to her by my Respiratory Consultant who suspected that some of the asthma and other breathing problems may be Vocal Cord Dysfunction.

She took a very thorough history – I was in there for an hour – on NHS time!  We went through the different breathing problems; some obviously asthma, some orthostatic, some being something else. She was interested in the problems I’m having with swallowing and eating – without immediately jumping to daft conclusions.

Then she stuck a camera up my nose and down my throat. This is just the sort of thing a good Catholic girlie can “offer up” :)

From this delightful experience she told me straight away that my throat was “cherry red” and otherwise a bit of a mess. So I now have a dx of Vocal Cord Dysfunction (VCD) and EERD (a form of reflux)

In her talk about how VCD works she spoke of it as a spectrum disorder. On the mild end are those who have what I suppose sounds like voice strain; teachers, soldiers and opera singers being the most common patients. (As my Resp Con is a Colonal in the army I wonder if that’s how he guessed so quickly what was happening to me).

On the rough end come those of us with severe asthma and autonomic nervous system problems. She hadn’t heard of dysautonomia as hyperadrenergic POTS or IST but she really quickly grasped the ANS dysfunction side of things for me and how that kicks in with VCD.

I’m to start therapy which will be around breathing exercises and voice control. There’s no cure as it’s obviously ANS related but it can be better managed – which I’m all for.

THIS PAPER IS A VERY GOOD OVERVIEW

Since the TIA last week I’ve had some problems with being upright and breathing. Needing to lie down more often and the bloomin’ stairs are a killer. I’ve set something off that I can’t get on top of right now. What a shambles.

Chronically ill mother’s homeschool approach.

dys mumI’ve noticed that sometimes the question of homeschooling while chronically ill is lumped in with pregnancy as if they are the same or very similar. They aren’t. Even if (like me) you have the joy of nine whole months of throwing up left right and centre with some “mummy brain” thrown in – pregnancy is different in one very vital way. No one is pregnant for years on end, and many of the more yukky sides of pregnancy are both treatable and manageable. It is also silly to try and lump pregnancy as an “illness”. It is’t, even if the culture of medical elitism tries to tell us it is.

Chronic illness can be neither treatable nor, at times, manageable – and is way more unpredictable. When you plan home ed through a pregnancy you know there’s a point in which you can pick up again. When you plan through chronic illness it’s a whole different set of challenges.

So, what are the things that you can do if the Boss has called you to homeschool and He’s called you to carry the chronic-cross too? You can tell Him what you think of His plan :) – and then you have to get on with it.

First things first. You see that big pile of guilt you’ve got building up over there. Deal with it. Sort out the fake from the real. Bin the fake and get yourself to Confession for the real stuff. If you are too sick for Confession (and there’s nothing mortal lurking about) you can pray a lot. He’s merciful like that. (even when you’ve told Him how you really feel).

Once that’s done (and yes I know it keeps rebuilding, but keep kicking it down) then you can move on to priorities. Prayer first. You’ll get nothing done without help from Upstairs. He has a lot of friends and relations who can be relied on to keep praying for you too. (Where would I be without St. Bridget of Sweden?) One of the wonderful things about the saints in heaven is that they can still pray, even when you, in fog, confusion and befuddlement can’t. Also we are fortunate that God, who is all wise gets a prayer of “Dear Lord, urdle, flurble mup.”

This little conversation is a good illustration of chronics homeshooling.

An article here asks a mum considering home education when she has chronic illness to think of a few things. It essentially says, pray, have a good husband and get some good fellow home ed mums on board to help out. It’s a good plan.

Yesterday a fellow home ed family came over. I’m still pretty crashed from the mini-stroke last week (TIA) but the mum of this family is completely relaxed around me no matter how wrecked I seem. She makes no fuss and simply does her bit around me. She takes the mic and allows me the space to do stuff when I think I can give it a go. Friendships like this are rare and to be treasured (so thanks Jo!)

This is another excellent article looking at a number of seriously chronically ill mothers coping with home ed

Then you must trust. While riding the trust you can plan for what curriculum you need to buy because you aren’t well enough to make it, teach it or organise it. All I can say on this is God Bless America! The UK has a shorter history of home ed (although it’s been around over 25 years) and has almost nothing of quality home ed resources sadly, (I think the awful national curriculum bares a lot of the blame – thanks Maggie Thatcher!). So, look at the American stuff. There’s a lot out there and yes it’s expensive (compared to making your own) and yes, most of it needs shipping and therefore costs are even higher and add the recent sneaky tax on educational materials in the UK and you’ll be in debt – but God never said debt was a sin; whereas not providing the best education you can for your children can be. You do need to plan your debt so you can pay it off, but I haven’t found a way of importing stuff without needing time to pay it off. It’s still a good option done with prayer, discernment and care.

Find ways to make resources do more than one job. Find ways to make cheaper resources when you’re well enough.  One of the things with most chronic illnesses and even acute ones like cancer, is there are good moments when you are more capable. Use them as best you can. I use those times to make and plan stuff that when I’m too sick I just can’t do.

But wouldn’t it be easier to sent them to school?

Not necessarily. First of all you would need to have a school that meets your children’s needs so you don’t have to undo the damage and do the home ed after school because not much ed has taken place in school. (Been there, done that; don’t fancy a repeat) Then  you’d need the energy to take and collect the children every day and cope with whatever fall-out the day has in store for you. That was hard enough when I was well!

Giving your children the best education you can give them is worth a lot and not having to undo stuff from school is a blessing.

Finally, all you can do is plan, pray, trust and take it one day at a time. I know more than one chronically ill mum who home educates children with some serious educational needs such as severe autism. Let them be an inspiration- not a moment of “Yikes! Why can’t I be that good?”

Dysautonomia – what did you say that was?

Global Dysautonomia Awareness Month copyHere’s quite a good explanation of the basics of dysautonomia. I notice she includes CFS (chronic fatigue syndrome) in the list. There is good science behind the idea that fibromyalgia is dysautonomic as it looks to be a form of hyperadrenergicPOTS. But I wasn’t aware that CFS has been included. It’s not that surprising though as some doctors (one in Australia that I can never remember the name of in particular) insist that up to 96% of patients with a dx of ME/CFS have some form of dysautonomia. But as Ramsay felt that a dx of dysautonomia meant a patient couldn’t have ME it’s a bit confusing.

Symptoms are very varied to the point where it has been said that each patient is different and certainly my Cardiologist agrees with that.

Death rates have not been measured although it seems to have a similar rate of suicide to other poorly treated chronic illnesses and there are a number of reports of sudden death similar to those associated with ME/cfs. As many of us have serious lung and Blood pressure problems it doesn’t seem that surprising that deaths happen. Studies in ME/Cfs show that heart failure is the number one cause of death with suicide coming in joint second with cancer – some more unusual cancers being oddly common among ME patients.

Talking anecdotaly I have come across a few people with a single diagnosesstanding usually POTS or IST without blood pressure problems or anything else. The symptoms of POTS and IST can be pretty horrible on their own but there’s definitely a difference in degree compared to those of us with ME/Cfs and/or fibromyalgia to go with it.

Most people I know with ME have some kind of orthostatic intolerance. Mine is pretty bad these days. Can’t stay upright for very long without becoming nauseous, light headed breathless and blacking out (pre-synocope).

dys5I don’t know what the end result of any research will be. There are tentative (poorly funded) moves to separate out the various forms of ME to get more accurate dx and hopefully treatment. It will very likely show that dysautonomia is either a form of ME or caused by ME or isn’t ME, but is dysautonomia.

One day we hope there will be suitable treatments that can put us into remission. But so far, that just isn’t the case.

Saw a GP today and hit the “they don’t know what to do” wall. Back on steroids but feeling pretty fed up. She did say she’d talk to my usual doc but she really wanted to refer me to another (insert very rude word here) neurologist. I refused.  Presently sofa’d – hope the steroids help.

Dysautonomia Awareness month

autonomic systemIn the slightly strange world I inhabit I know quite a few people around the net who either have some form of dysautonomia or have one of the many co-mobidities that we have and so know about dysautonomia, even if they don’t have it. This can give me the false impression that everyone has heard of it and at least, has a general idea of what it is.

Dysautonomia isn’t well known and part of the reason is that it is supposed to be rare. The most common form is POTS with NMH; that is postural orthostatic tachycardia syndrome with neurally mediated hypotension. The people with this get tachy when upright and their BP can drop like a stone. A lot of people with this have low blood volume.

fight flightHyperadrenergic POTS is even rarer. We get tachy when upright and our BP will shoot upwards and for those of us on the “combo” end of things it will nose dive and shoot up again. It’s because the normal fight or flight responses are stuck on “ON” mode. This comes with the added complication that while we seem to be pumping out the adrenaline (ephinephrine) which is changed into noradreneline (norepinephrine) it might never really make it to dopamine, or if it does, not much dopamine is made. If it is made the uptake is poor and if the uptake can cope even a little, the re-uptake is bust. This is probably the root of my tremor and possibly the myoclonus too.

The depressed immune system means we have fun with infections.

Then in a small corner of rarity is IST – inappropriate sinus tachycardia. We have tachycardia all the time. In my case it’s around 100 (without meds) when I’m sitting still and can get down to the high 80s if I lie still – but often can’t do that. Upright it can get up in the 150s which is mild compared to some folk.

IST is thought to be a form of POTS but the medical jury is still out on that one. As there is very little research on IST – less than other POTS forms, it seems unlikely we’ll get many answers any time soon.

Other symptoms are brain fog – I hate it – confusion, memory loss, visual changes and auditory sensitivities.

We also get seizures. POTs related seizures are common and horrible. I had a one off the other night – thank God it was a one off. Seemed to be because I was particularly shattered. Not infection related this time. And that’s another problem – we don’t get seizures for one reason, we get them for a load and doctors like to call them “idiopathic” meaning they don’t know what causes them. They don’t respond to anticonvulsants unfortunately, so we are left with no treatment.

Dysautonomia ranges from mild through to severe where people are mostly stuck in bed with NG tube for feeding and sometimes oxygen. On the nasty end dysauto can be fatal; respiratory failure, heart attack, stroke seem to be the lead CoD.

This is a reasonably good article on IST as part of Dysautonomia.

So what does getting aware mean? Well first of all – if you have someone in your life with this disease, say a prayer for them. Be patient with them when they are acting spaced, foggy, tired or just off. Don’t assume that someone who is trying their best to be as normal as possible can keep that up every day. Crash days, weeks and even months happen. Be kind.

If you have money and know a good charity or research thingy then please do donate. We need research if we are ever to get good treatment, let alone a cure.

It’s not the anger, it’s the guilt.

DownloadSomeone I was in a short email correspondence with said that if it should happen that he became seriously ill, he would be very angry. I have to say, I doubt it. I don’t claim to know the inner emotional workings of the man who wrote this, but I do know how chronic illness works, and believe me, anger is a very tiring emotion and therefore not one that is tenable, for long periods of time. I’m not saying I’ve never felt angry or seen anger expressed by fellow Chronics – I have. Those of us who have rubbish or even abusive meetings with doctors will express justifiable anger; and sadly that happens far too often. But that’s just for those times.

The feeling or sense that bugs me much more of the time is guilt. I don’t know how ubiquitous this feeling is among us chronics, but it’s fairly constant with me, and as I think I’m pretty common, I am guessing there are others out there who struggle with it. I am not going to go into all the reasons I feel guilty, nor will I explain those awful moments when it comes to a head and I become a gibbering wreck. You don’t need to read about that.

This is not Catholic guilt. Wish it was – ‘cuz Confession cures that :lol:

No, this guilt is about all the things I used to do that I can’t do. Some of it isn’t just guilt it’s a kind of jealousy of others which in turn leads to guilt; not just about what they can do I can’t, but guilt over the jealousy as well as guilt over not being able to do stuff. Quite a complicated mess for a brain-fogger to handle. Tiring mess at times too, leaving little left for something like anger.

So, how to deal with it.

First – a reality check. Sometimes things are bloomin’orrid and that’s life. So, accept reality. Don’t paint it worse than it is, and don’t run and hide from it. Get down with Fr Fran Fortuna’s Everybody Gotta Suffer and accept. This is easy to write and difficult to do, but it is, honestly, worth the effort.

Second; don’t assume that other people are cross that you can’t do what you used to do. Projection is a bad coping mechanism and is more likely to make the picker-upperer (there’s a word that just needs to exist) of your lost ability more cross with you than the business of picking up where you left off.

I know that many people are not projecting – that their friends and even family do tell them they are lazy, need to try harder, pull themselves together. The most difficult thing here to to stick with reality and accept that they are the one with the bad attitude and it isn’t your fault.

Third: Don’t give up because of the silly guilt. There is some mechanism in false-guilt that leads to fear. So, the temptation is, to throw up your hands (or just one if the other one won’t coordinate) and cry “Forget it! I give up!”

Take the good days and enjoy them. I’ve had odd days when I can play the piano again and even cook a meal once in a while without burning something, leaving something raw, filling the kitchen with smoke or killing any of the kids.

Lastly but most importantly of all be grateful.

If you just threw something at the computer screen, take it back and think a minute. There are still good things in life, even with chronic illness. I’m not saying pretend things are better than they are – but just be glad for the things that are good.

If you have reached that awful point where you just can’t see anything good then look for something small – a flower in bloom, a slice of cake or even the smell of rain. Anything that holds something good in it.

Finally it’s worth remembering that for people with ME/cfs and some forms of Dysautonomia that emotions can get a bit weird. Mood is heavily influenced by things like how our adrenals work, serotonin uptake, how malnourished we have become because of a busted metabolism and the generally busted HPO axis. This, coupled with mood changing drugs such as steroids can have quite an effect on our coping skills.

All we can do is keep at it. One day at a time – and on bad days one hour at time.

PS. I think I mentioned in a post where I’d seen the Cardiologist that I had decided not to have the tests for hyperadrenergic POTS done because they are very complicated and need lots of time and very skilled people.  Jackie’s very informative post here gives you the info on the tests.

ENDNOTE: I may also have mentioned that I am now on 10 mg twice a day of Ivabradine and as the max dose is 7.5 mg twice a day I spent a long time in the hospital pharmacy with my son.  Well, first repeat prescription request has hit the wall as the pharmacist is having the heeby-jeebies over handing the stuff over. I had written clearly on the the request that this was the Consultant Cardio’s decision and had been okayed by the hospital pharmacy and I assume the letter is in my notes by now – but it looks like there’s still some sorting out to do. I only hope this isn’t going to be an issue every time I need a repeat.  No anger or guilt – just frustration!

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 :)