Tag Archive | fibromyalgia

If She Tries to Resist, Assimilate Her!

Just a very brief outline of what was upsetting me yesterday, and will no doubt continue to unsettle for a while.

Last year when Mum moved in with us, I took her along to a Women’s mental health support group which was run by a national charity known as Rethink Mental Illness. I was surprised to recognise many of the members from the Fibromyalgia group I had previously been a member of, but had been uncomfortable with it being run by a mental health charity. (ME and Fibromyalgia have been dogged by inappropriate association with psychiatry for decades)

To cut a long story short, the group decided to break free of Rethink and set up on their own (there was actually a very acrimonious split but I won’t go into details).

It was decided that the group would amalgamate to be both a Fibro group and a mental health group and since we were all friends, we could divide the time informally and equally between the two. I thought it suited everyone.

But then, just after Christmas, there was a big, bad falling out and one of the members left/ was pushed out of the group, and one or two members made a complete turnaround and decided to ask Rethink to step back in, as though everything that had happened before and all the reasons we ejected Rethink were irrelevant.

I was given leaflets to re-apply to Rethink to be ‘assessed’ by them, and I filled them in but carried them around in my bag for weeks, really not quite comfortable about being involved with them again (not to mention the fact that I was unhappy about various aspects of the way the group was going, not least of which was the decision to offically call the group a Mental Health group and ignore the ME & Fibromyalgia).

On Friday, we weren’t able to get to the group and apparently they met with Rethink  without us. Rethink determined that nobody could be a member of the group anymore unless they were assessed and approved by Rethink and so we could no longer attend meetings until we got that sorted out. Not only that, but they stipulated that we were not even allowed to meet members of the group for coffee until Rethink had approved us.

Well, no.

Apparently the other members of the group all sat there meekly and said “Yes Rethink, whatever you say, Rethink, three bags full, Rethink.”

They seem to be honestly surprised and confused that I would disobey. They had not anticipated it and apparently everybody is reeling because I have broken the group up!

Of course I am very sorry and upset to have hurt or upset my friends. But by all accounts, I think these friendships must have been very weak and superficial if not entirely fake if they would submit to tyranny for the dubious promise of safety that Rethink offers.

I think I probably need to learn to say “no” louder and more determinedly at an earlier stage if I’m to avoid repeats. But in this instance, I think it’s all over and we need to stand our ground and be prepared to lose the group to Rethink. I’m not willing to submit to the malevolence or incompetence of a group that has already shown themselves to be untrustworthy and more trouble than it’s worth, and I doubt the others are strong enough to resist.

I hope I’m wrong and the friendships will survive despite the disagreement (and Rethink’s ridiculous rules). But somehow, I very much doubt it.

They’re Civilians! Civilians with Partical Weapons!

Apologies for the rather long hiatus in posting. Life as a full time (mental health) carer has been very taxing indeed, and I have found that my life and ‘free’ time has no longer been my own and, when I have had free time, I have been too exhausted to use it productively.

There have been lots of things going on, and there are lots of things I could post about but I will have to think about what and how much to share, why I’m writing in the first place and who my audience might be.

Since the Autumn I have also been battling with the NHS system to get to the bottom of my health issues. I now have an official Consultant-led confirmation of the diagnosis of ME, although disappointingly that doesn’t seem to help much – the general gist of things is that they can’t really do anything very much to help me. But I have seen a neurologist and will be referred back to the Pain Clinic apart from other things.

Additionally, my GP has been looking for evidence of Cushing’s Disease. It is considered a ‘rare’ disease, but it is on the list of endocrine disorders that should be ruled out before diagnosing either Fibromyalgia or ME as well as Adrenal Fatigue/ Exhaustion. It’s actually in a way rather the opposite of Adrenal Exhaustion since AE is a lack of adrenal hormones (the adrenals are exhausted) whereas Cushing’s is an excess of adrenal hormones – in particular, cortisol, which may be caused either by overuse of steroid medicines or the presence of a pituitary or adrenal tumour.

After various stages of testing, I have an appointment for a kidney scan (primarily to find out why my blood pressure is so enormously high and resistant to meds), and I’m waiting for the results of a new MRI. My GP said that, even though my cortisol levels appear normal so far, if there is no mass on my kidneys she will order an adrenal scan as there is obviously something not quite right. So no results yet but I feel as though I’m making (slow) progress at last thanks to my lovely GP who is the first to take me seriously and keep on testing until we find the truth.

That’s all for now. I do plan to come back to blogging. If you’re reading, please let me know. If it’s only for me I may still post as I find it therapeutic. Talking of therapy, my therapy of choice is still Star Trek. Top marks to any Trekkie who is able to identify the episode – I’ll give you a clue, it’s from Star Trek Voyager – from which the title of this post is named. (I used it as I’m in the middle of an upsetting episode in real life, that has me confused and questioning everything I thought I knew, but that is for another day.)

LLAP

Postnatal Depletion—Even 10 Years Later

This is a really interesting article, and I can’t help but notice the similarity between the symptoms of what the author calls ‘post-natal depletion’ and ME/ CFS/ Fibromyalgia – doctors and scientists and article writers are constantly coming up with new theories,  but given that I got ill right after giving birth in 2003 (and the fact that I have had 9 pregnancies altogether, and at least 5 of those were back-to-back without a break), I wonder whether this might more readily explain how and why I became ill. And perhaps suggests a way forward to get healthy again.

http://goop.com/postnatal-depletion-even-10-years-later/

Progress

I have a new phone – an android,  a Samsung Galaxy Note 4 to be precise. It’s groovy because it has a stylus but I am missing the Blackberry keyboard a lot. I’m finding the new phone far less practical in terms of usability for somebody with weakness in my hands and wrists.

It’s too heavy and requires more movement in both hands. I am somewhat tempted to get myself another old Blackberry but I stupidly signed up for a contract. I’m trying to persuade my daughter to take it off my hands! 🙂

The worst thing is the feeling of lack of control – several times I have started posts and lost them.

A quick bit of good news next – today I had my first appointment with the good GP who just came back from maternity leave and let me say it was worth waiting for her.

I’m too tired now to go into detail but it’s all good. Maybe I will write again tomorrow  (but I will probably use the laptop if I can manage it).

Budget Healthcare

I know that we are supremely blessed out of all the world to have a publicly funded healthcare system. I am extremely grateful for it. In the case of my son, it saved his life… but only after almost taking it through misdiagnosis and negligence (see the page above on Type 1 Diabetes).

I don’t know whether it is the same across the board or whether my family and I have been particularly unlucky with bad and lazy doctors, but I could recount a catalogue of poor care and misdiagnosis. In fact, I think I will (indulge me):

  • When I was 12, I was knocked off my bike in a hit and run incident, causing a head injury and concussion (and actually who knows what else, as despite a litany of symptoms after this I have had no follow-up?) There was no room on the children’s ward, so I was placed in a single room off the men’s geriatric ward. I was allowed no visitors except at the ward’s very limited visiting times. I didn’t even receive nursing from the children’s ward. So to put it mildly, a horrible experience all round. (Incidentally, the police never investigated the hit and run either, so some guy who probably thought he killed a child – he didn’t stop to check – was just left to carry on with his life without so much as a caution.)
  • When I was 17, I went to the doctor reporting abdominal pain and a year of missed periods. This doctor had already missed my brother’s Crohn’s for more than ten years so I had armed myself with information. I suggested that I thought I might have ovarian cysts, so she sent me for a scan which confirmed my diagnosis, but I was told they were best left alone. I was diagnosed with Poly-cystic ovary syndrome (PCOS) but not told. I did not find out about this diagnosis until another doctor happened to find it in my notes 25 years later, despite having multiple miscarriages in the intervening period.
  • When I was 22, I had a debilitating throat infection with swollen glands which kept me off work for more than two weeks. The doctor refused to visit me. When I finally was well enough to go and see her, she told me it was ‘probably’ glandular fever but refused to write me a sick note for work. (Incidentally, I don’t think this was the first incidence of this illness, and I suspect it goes back to early childhood.) I remember getting in a lot of trouble for that!
  • In 2003 right after the birth of my fourth child, I seemed to have a recurrence of this illness which absolutely knocked me down with widespread pain, digestive troubles, and a host of other unexplained and apparently neurological symptoms. I can’t be sure whether or not it was the same thing or something different, as I was never tested for EBV (The Epstein-Barr Virus, which is the virus responsible for both glandular fever and tonsilitis.) I went to the doctor multiple times, only to be told that I was depressed! (what?!) Later, this bizarre misdiagnosis changed to indigestion (what?!) and IBS caused by stress (what?!) Lastly, she suggested Chronic Fatigue  (which seems quite bizarre to me as I never once mentioned fatigue as one of my core symptoms although it was present, it always seemed to me to be a secondary result of the illness, as is depression) but then told me she didn’t believe in it anyway and refused to diagnose it!! (what?!) Finally, after 13 years and several different opinions from different doctors, I finally got a diagnosis of so-called ‘ME/CFS’. A step in the right direction perhaps but not much help, and really on no basis at all.

Jackie commented yesterday on one of my previous posts on ME, drawing my attention  to some articles explaining the very fundamental differences between ME and CFS, and I will share them below. As I am sure I have mentioned before, the NHS has ignored the WHO’s determination that ME is a neurological illness, and instead has chosen – under the direction of a group of now largely discredited psychiatrists who like to believe that it is an imagined illness – to use their own ‘NICE’ guidelines which conflate ME with ‘Chronic Fatigue’.

CFS and ME Comparison Chart

CFS is Always a Misdiagnosis

ME v CFS – They’re Not the Same!

Reading through these important articles (and I recommend the Hummingbird Foundation as one of the few places where you will find reliable information about ME – see my health links to the right), I am struck by how easy it would have been to have sent me for a brain scan when I first got ill. Either it would have shown something and I could have received a correct diagnosis immediately, or it would have been clear that it wasn’t ME and further investigation needed to be undertaken to determine the true cause of the illness.

But the NHS does not routinely offer brain scans to people who present with ME-like symptoms. (In fact, I am still pushing for a scan relating to my head injury more than 30 years later because I strongly suspect pituitary damage, but I might as well be banging that head up against a big brick wall!)

To save a bit of money, the NHS lumps genuine ME together with unexplained CFS and recommends only a treatment which can severely damage people with genuine ME (although this may be alright for people with chronic fatigue that isn’t ME), with no regard whatsoever to the years of suffering and lives wasted. The same is true of people with clear Thyroid conversion issues, but whose TSH appears normal. (More to say on that another time.)

ME/ CFS/ Fibromyalgia (which may or may not be the same illness) used to be diagnosed by a process of exclusion. But when I went to the Rheumatologist and received the dubious new diagnosis of Fibromyalgia, he told me that this is no longer the policy in the NHS, but rather, a (mis)diagnosis is offered on the basis of what it ‘appears to be’. This is truly scandalous. So I was not tested for Rheumatoid Arthritis, Sjogren’s or Lupus, despite having an overwhelming list of symptoms that would warrant such testing.

When I went last week to my first meeting of the local Fibromyalgia support group, I was surprised to find a large number with multiple diagnoses including three with MS, and lo! When I looked up co-morbidities of Myalgia Encephalomyelitis, MS was listed as commonly occurring together with ME. But this is important – if you were once diagnosed with CFS but then later received a diagnosis of MS, CFS was a false diagnosis because the nature of CFS is unexplained fatigue – if it goes on to be explained, it ceases to be CFS. But if you had a diagnosis of ME and then later received a diagnosis of MS, they could be legitimately occurring together.

But this can only be determined by proper testing, which is not generally available on the NHS. The only choices available to an NHS patient are to fight and battle and shout and scream in the hope of getting the help you need (and risk getting labeled as a trouble-maker, or worse) or to get private testing done. Most people of course do not have that option open to them.

When my Dad was rushed into hospital by ambulance with heart failure, the front-line care appeared absolutely top-notch. We were all very impressed. But after being bullied into having an operation that he wasn’t strong enough to survive (for what nefarious reason I cannot determine), and having had a stroke on the table which caused a severe personality change, depression and emotional lability which made his last year hell, he was never offered any kind of aftercare. Physiotherapy was not even suggested until the week before he died, when of course it was far too late. Front-line care may be impressive, but the reality for the day-to-day care of living with chronic illness can only be described as poor in the extreme.

I don’t knock the NHS because I hate it. I love it, and I want it to continue and to improve, and I can only think that it has been mismanaged the way that it has for the express purpose of dismantling it and selling it off. I wish I knew what could be done to reverse the trend. But I think that patients can and must speak up when they receive poor care and demand better.

ME Merry-go-round

I’ve been waiting, since my Zombie Apocalypse, for something good, or significant, or interesting, or funny to share.

That’s not to say that nothing of import has happened – I had planned to write after the Paris attacks. When they happened, we were at a metal gig ourselves and even before I knew what had been attacked, I remember thinking that Islamists would imagine that what we were doing was somehow sinful, simply because they don’t understand it and can’t distinguish good from evil.

But I didn’t write because I didn’t have the energy to express the sorrow and anger I felt.

I haven’t had much energy for anything recently. I have had a basically unexplained illness since 2003, and since 2013 they have been calling it ME (or CFS, depending who you speak to) and now Fibromyalgia has been added to my list of diagnoses.

But my relapse has been so hard and so fast and so un-relenting this time that I have started wondering and asking questions about possible alternative explanations, so I have begun to do the rounds of neurologists and rheumalogists etc. trying to rule out MS, RA or Lupus.

Unfortunately, none of these specialists so far want to get involved with the ME/cfs/Fibro diagnosis. You shouldn’t have to bang your head up against a big brick wall when you’re ill but that seems to be the way of things in the NHS, particularly with this label.

When I do have more energy, I might write a bit about what is like to live with this illness. Mostly I just rant a little on twitter about the ‘symptom roulette’ that we experience.

But something I may not have mentioned before is guilt – there are so, so many ways in which I feel I am failing, and while I know it isn’t my fault, I am made to feel as though I am somehow choosing this – choosing to live in pain, unable to do the least work (yesterday, since we had visitors, I did my best to tidy, I cooked, washed up, and today I am a wreck, and can only *hope* the weekend is long enough to recover).

I hate living in a dirty, untidy house, and there is literally nothing I can do about it.

There’s a lot about the world, and my life, that feels out of control. My dreams have been weirder and more disturbing than normal, even for me. Music, and specifically Rock and Heavy Metal, is one of the few things that make me really happy in amongst all the mess and pain and sorrow.

So as much pain I am in, and as much as I feel wrecked beyond anything the word ‘fatigue’ can describe, the one thing I make sure I get out to is live music. I can’t drive there, and I usually can’t stand up for long. But if needs be, I’ll get taken in on a stretcher. Music, and art, makes life worth living 🙂

Life with ME

Pacing
Is a thing
We’re supposed to do –
Determining
At the start of the day
Which activities
To choose
And which
Must fall by the way.
No matter
That we only get to choose
Half a life.
Which half
Is worth preserving
And which must be
Sacrificed?
Can you pace your emotions
So you only feel half sad –
Mildly disappointed
At the injustice
Of being cut down in your prime?
There are worse things
To suffer
After all.

(c) Sharon Tootill (Shoshana) 2015