CHAOSTOCOSMOS

Wednesday, 30 September 2009

CAT Therapy

Yeah, usually works for me! :-)

This morning I received copies of letters from the Pain Service team who had assessed me back in August. This included one asking a particular consultant to assess my suitability for treatment as she is known for her work with CAT Therapy and Fibromyalgia.

CAT Therapy is really Cognitive Analytic Therapy, but may be worth a try too.

Good news and bad news

The good news: The results from my x-ray were that there was no evidence of damage, breaks, nor any underlying osteoarthritis that might account for the ongoing pain.

The bad news: The results from my x-ray were that there was no evidence of damage, breaks, nor any underlying osteoarthritis that might account for the ongoing pain.

Essentially meaning that it might have been better to find something that could actually be treated and that we must therefore deduce in the absence of any other evidence that it is the fibromyalgia that has switched the pain switch on and won't let it be switched off again. I already know that it simply does not respond to pain medications and, as I explained before, in the English climate, I now have this pain 24/7/365. It never goes away and often keeps me awake. It's totally distracting and is often so bad that it often makes me cry, wince, sweat and feel nauseous. It hurts to put weight on the leg and hip and the pain is made worse by walking even short distances. I can't stand on it, I can't even sit on it comfortably and even lying down, I have to place my leg in very specific positions in order to make it just bearably comfortable. I really can't deal with this.

The only thing I know I can do to have any quality of life is to return to a warm climate.

The exercise conundrum

image For fibromyalgia, the advice is to get gentle exercise to keep moving and avoid ceasing up. This is essential and no-one advocates this more than I. In my previous life in Tenerife, the generally favourable weather and having a dog meant that most days I went for many, frequent short walks - always within the limits of my abilities - that kept me functioning but didn't cause undue strain.

This is not the same as "the more you do, the more you can do" that applies to most conditions and to healthy people. Fibromyalgia limits have to be respected. As Adrienne Dellwo points out:

For us, however, the last thing we should do is push ourselves to the point of pain. Same goes for exhaustion. The reason for that difference is central sensitization, which is generally thought to be an important part of FMS and ME/CFS.

Indeed, I have a leaflet here someplace - from a local source - which reiterates that, even for healthy people - you should stop exercise if it hurts, or you feel dizzy, etc.

Hell, if I were to stop when it hurts, or I feel dizzy and begin to shake from overexertion, most of the time I wouldn't even make it to the bathroom. As it is, I get breathless going to the kitchen and that's only about a dozen paces away, on the same level in a bungalow!

With Chronic Fatigue Syndrome (Myalgic Encephalomyelitis), we read much about treatment in the UK, which advocates Graded Exercise Therapy - mostly referencing around 4,000 studies which show why this is actually harmful and that it can cause permanent worsening of symptoms.

I'm diagnosed with and have symptoms of both FMS and ME/CFS, so which is appropriate?

My own experience is that if I pass my limits, I pay for it with hellish flares. If I attempt to ignore my instincts and follow advice from the unenlightened to keep doing more, I do not find myself gradually able to do more, but quickly less. I hit the brick wall earlier and become less able, until I have no alternative but to take as complete rest as I can achieve until the flare subsides.

That is more or less what has happened this summer. In June / July, I attended a weekly course that was a mile walk and an 8 mile bus ride (each way). Add to that a few hours on very unsuitable seating and this one afternoon was really more than I could cope with in any one week. I made sure that I picked up any shopping items I needed in this same trip, but I did also have other commitments to attend in that time; doctors, dentist, help groups, so I was walking an average of 3 - 5 miles in each of those weeks. Now I know that 3 - 5 miles is 3 - 5 miles more than most averagely healthy people in the UK, yet still my GP advised me to exercise more!

This totally ignores me as an individual, the fact that I already get far more exercise than most "average folk" and that he's "preaching to the choir" - actually I'm not some lazy lardarse - once upon a time, I used to regularly go swimming, dance classes, running and weight-training, whilst doing a full-time job, having a social life and working part-time as a security guard.

By the end of those six weeks this year, I was so exhausted and in so much pain that I can bearly describe it. It's been like having all over toothache, with constant headache and nausea. It does not respond to drugs. It has been far too intrusive to ignore or be distracted from. My sleep has been disturbed, intermittent and of poor quality. My concentration has been so affected that most days I couldn't even follow the plot of a soap-opera and with the headaches and disturbed vision, most of the time I could only lie flat, with my eyes closed, hoping the pain / nausea would pass.

And mostly it didn't pass. It has been tear-inducing unbearable.

Eventually, after following my instincts to rest until I felt a bit better, in the last week or so, I've finally managed 2 days where I have been able to sit up for more than 15 minutes at a time.

And now that I am stuck in the inclement English climate, even when it's warm enough to go out and even when it is not actually raining, it's unbearably humid. In winter, my muscles just freeze up and my joints lock painfully in the damp and cold, so I can not manage to walk at all.

In addition, being over a mile away from any amenities, not able to drive, scant (expensive) public transport (and no seats at bus stops *), means that to do the simplest of tasks - like visiting the doctor or getting fresh food items - requires that I go way, way beyond my limits to cause such terrible flares of symptoms that it becomes impossible to function, let alone stay active.

It isn't always possible to get buses, mostly because there are so few they don't appear at the times one wants them. Buses hurt me anyway with all the jolting and, I cannot stand at bus stops where there are no seats. Walking hurts like hell, but it hurts less than standing.

* I've thought about a shooting stick or a folding seat, but I cannot carry anything. I brought a quiche back from the local corner store (300 yards) once and my wrist hurt for two days.

My balance is dreadful - I keep tripping over "fresh air" - and I get so much pain in my hip that I feel it might be of considerable benefit to me to take some of the weight off it and steady myself with a stick, but I don't, because I know my wrists can't take the additional strain.

Because of the pain in my wrists, I bought supports for them to try to help alleviate the problem that way, but within hours of wearing them, my skin had reacted to them, dried up, become itchy and cracked to resemble the skin of a lizard and it hurt like a 1st degree burn.

During the last two weeks, since I went to the hospital to get my hip x-rayed, I had not been out. The first few days, because I could no more move after that 2-bus trip than I could have flapped my arms to fly to the moon and, the last few to rest up in anticipation of another outing.

Yesterday, I needed to go to the doctor's surgery to get the results of that x-ray, to the health shop for some supplements and to a supermarket for fresh salad, etc. On the way from one to another, I purchased one item in a pet shop and looked, briefly, in a couple of charity shops. I reckon I was out no more than 2 1/2 hours in total. Hardly an excessive exertion.

Just from this I was in so much pain and so exhausted that I had to get a taxi home. I staggered to the taxi rank. I was dripping in sweat so much that my clothes were damp and sticking to me. My face was red and flushed. I was breathless, I could hardly put one foot in front of the other and I was so hot, that had it not been for the sweat, I might have been worried that I could spontaneously combust. And I simply cannot describe to you how ill I felt with nausea and shaking.

In fact, I had begun slowing up, exhausted, dizzy, nauseous and physically shaking from the "over-exertion" on the way out - about 200 - 250 yards from the house. That is my limit, but I cannot restrict myself to this; I am required to go to doctors, hospitals, benefits agencies, etc.

Despite all this, my intuition tells me to continue with what I know worked for me before: frequent, short bursts of non-straining, gentle exercise, such as walking. And I would do if the climate would let me - that, I guess I could overcome by buying a treadmill - although that could be a waste when I'm already rendered totally non-functional by the M.E. and those essential trips.

It's very much a Catch 22 situation that I cannot see a way around. Ideas anyone?

Hospital Anxiety and Depression (HAD) Scores

had

Nothing surprising here, given the circumstances - and those scores, it should be noted, are after around 6 months already on the appropriate medication. Wanna check your own scores? 

Hospital Anxiety and Depression (HAD) Self-Assessment

Friday, 18 September 2009

30 Things About My Invisible Illness You May Not Know

image  Here's my contribution for this week's Invisible Illness Week. If you want to create your own list, see this post.

1. The chronic illness(es) I live with are: (with confirmed diagnoses in writing) (1) Fibromyalgia, (2) Chronic fatigue syndrome (myalgic encephalomyelitis), (3) Irritable Bowel Syndrome and (4) Low Back Pain (Lumbago). As if those weren't enough, I also have symptoms (to some degree or other) of all of the following commonly overlapping conditions; Interstitial cystitis (since 1973), Irritable Bladder, Migraine Headaches, Multiple Chemical Sensitivity, Myofascial Pain Syndrome, Restless Legs Syndrome, Temporomandibular Joint Pain, Vulvodynia and various incarnations of Sleep Disorders. (Not unsurprisingly living with that lot for so long, I'm also being treated for anxiety and depression, am now probably menopausal, also awaiting surgery for fibroids and a possible polyp and, have been diagnosed with breast microcalcifications, that were also judged to require intervention.)
2. I was diagnosed with it in the year: (1 & 2) 2008, (3) 1980 and 1986. (4) 1973.
3. But I had symptoms since: (1) 1995 (2) 1973, (3) 1980, (4) 1973 and, with 20/20 hindsight, I can think of symptoms going back to my childhood and ancestors that now appear connected.
4. The biggest adjustment I’ve had to make is: Everything. Just trying to keep symptoms down to a manageable level feels like a full-time job, akin to the mythical, "Painting the Forth Bridge". Between things that I must do or must not do, must eat or must not eat, can wear and can't wear and, trying to find personal hygiene products, household products, clothing and shoes, medical treatments, etc., that don't cause allergies, adverse reactions or some other nasty side-effects is seriously frustrating, but I have no choice but to walk on such eggshells, every single day.
5. Most people assume: There's nothing wrong with me!
6. The hardest part about mornings are: Waking up in terrible pain, getting breakfast and feeling exhausted, like I'm done for the day - this is without even considering ablutions. Insensitively cheery people when I'm shuffling around, visibly bent, clearly affected by something and feel like shit. Or asking me questions and expecting my brain to be functional before noon!
7. My favorite medical TV show was: Strong Medicine.
8. A gadget I couldn’t live without is: My laptop.
9. The hardest part about nights are: Not being able to get to sleep, or waking early or having recurrent nightmares when I do manage to get some deep sleep.
10. Each day I take 1 - 6 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: Am willing to try those that make some logical sense and are not "snake oil", but generally can't because of the prohibitive ongoing costs.
12. If I had to choose between an invisible illness or visible I would choose: Neither, thank you! This is a tough one, because I certainly wouldn't like to have a physical deformity to deal with too (getting old, fat and ugly is bad enough), but the hurtful things people do because they can't/won't see my illnesses often feel worse than the physical pain I endure on a near constant basis.
13. Regarding working and career: What career? I was "let go" due to ill-health, twice, in 1995 and again in 1997. I have documentary evidence to back this up (as well as the medical certificates issued to me last year), so it is not merely my opinion that I could not work. My symptoms have worsened considerably since that time and, I've deteriorated by a huge margin in the last year.
14. People would be surprised to know: That I once had a brain. That worked! 
15. The hardest thing to accept about my new reality has been: Everything.
16. Something I never thought I could do with my illness that I did was: I'm so physically impaired now, I can't think of a single thing that would fit in this category. I suppose that, "retaining my sense of humour" is the closest thing that counts. That's sick too! :)
17. The commercials about my illness: Don't exist. Online ads are for fake "miracle cures."
18. Something I really miss doing since I was diagnosed is: Singing and dancing.
19. It was really hard to have to give up: My life, my dog, smoking.
20. A new hobby I have taken up since my diagnosis is: You're kidding me, aren't you?
21. If I could have one day of feeling normal again I would: Travel, catch up with friends.
22. My illness has taught me: That empathy and compassion, like romance, are the pure invention of novelists. Well, at least, where they do occur, they seem to be rare and precious gifts.
23. Want to know a secret? One thing people say that gets under my skin is: Well, right behind those who persist in their self-serving beliefs that there isn't anything wrong with me, are those (including doctors) who suggest I need exercise. Especially when I was already having to walk 3 - 5 miles a week when they said it. Of course it caused me to relapse. And no, I've never recovered.
24. But I love it when people: Ask me questions and appear to want to try to understand.
25. My favorite motto, scripture, quote that gets me through tough times is: "When I despair, I remember that all through history the ways of truth and love have always won. There have been tyrants, and murderers, and for a time they can seem invincible, but in the end they always fall. Think of this -- always." - Mahatma Gandhi
26. When someone is diagnosed I’d like to tell them: Enjoy for a moment the "relief" in finally getting a proper label for your ills, which, no doubt, took you some time and effort to get. Now prepare for the real fight. Get as much support as you can, join every group you can find and talk to as many people with the same condition(s) as you, as you can. This is the only way you will retain any sanity against the doubters and, hearing many near-identical symptom reports will convince even the most cynical that it cannot be mere coincidence or something you "made up."
27. Something that has surprised me about living with an illness is: How cruel people can be.
28. The nicest thing someone did for me when I wasn’t feeling well was: Michaela got me a foot massage. Just listening. And giving me moral support. And assuring me that I'm not going mad.
29. I’m involved with Invisible Illness Week because: I want to help make these illnesses visible, because I would not even wish my worst enemies to have to suffer what I do.
30. The fact that you read this list makes me feel: Hopeful that you will have gained a little understanding about what it is like to live with one (or several) of these conditions.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

Thursday, 17 September 2009

Fibromyalgia Bill of Rights

People with Fibromyalgia shall have the following rights:

  • The right not to be patronized.
  • The right not to be dismissed as a nut job.
  • The right to refrain on occasion from family and social activities without guilt.
  • The right to have assistance for domestic chores in the home.
  • The right to stay in bed for a all day without guilt.
  • The right to take our prescribed medication without somebody thinking or saying "you're addicted".
  • The right to vent once in a while without accusation.
  • The right to be happy without having this being misinterpreted as "you're feeling better".
  • The right to change our minds, without guilt, about going somewhere or doing something because we aren't as capable as we first thought.
  • The right to be unique and distinct, even in comparison to other people with this condition.
  • Most of all: The right to be believed when we say how we really feel.


(Of course these are not rights, but they are requests) -- Author unknown

From Fibrotalk via PatientsLikeMe

Hip, hip, hoo(x-)ray ...

Eight years ago - it was September 2001, when the now middle-aged kittehs were still only around 6 months old I was taking a couple of them to the vet. With a full cat basket in each hand, the dog attached to my wrist on a lead and my handbag over my shoulder ... it had been drizzling and I slipped on the wet concrete slope leading out of the house. Not having any hands left free to save myself, I came down with an almighty, loud and VERY painful *CRACK* flat on my arse.

For ages afterwards, I could hardly move and was in excruciating pain, but I was too hurt to be able to drive, or get the bus to see a doctor, so I could only wait for the pain to subside.

It never did get better completely and I was left with a clicking and clunking in my right hip joint, which constantly gets stiff and achy, but at least in Tenerife's climate, the pain was only really bothersome on the couple of days a month when there was a significant amount of rain.

However, since I've been stuck the UK, I've been in really severe pain 24/7/365 - like having a permanent "gnawing toothache" - in my hip. It never goes away and often keeps me awake. It's totally distracting and is so bad that it often makes me cry, wince, sweat and feel nauseous.

It hurts to put weight on the leg and hip and the pain is made worse by walking even short distances. I can't stand on it, I can't even sit on it comfortably and even lying down, I have to place my leg in very specific positions in order to make it just bearably comfortable.

I've spent all these years teaching myself NOT to limp and to resist any temptation to place more weight on the left hip in compensation, lest I cause more trouble (so, of course, it doesn't *LOOK* like anything is wrong), but the pain also refers right down my leg, thigh, knee and to my ankle and foot. All of those joints and muscles hurt on both sides anyway, but the right side suffers worse.

A year ago, I mentioned this to my GP, who merely suggested I bring it up with the Rheumatologist to whom I was referred for my fibromyalgia diagnosis, which I certainly did, but they did not carry out any specific examinations or tests on it either.

Meanwhile, none of the drugs I've tried ever does anything whatsoever to relieve the pain and the effects on it from my TENS machine are only minimal and "while it lasts". Warmer "summer" (which in the UK, of course, just means "the even wetter season") weather did nothing whatsoever to help any of my symptoms, so I've been way past the end of my tether with it for months.

Of course, this could just be the fibromyalgia having switched the pain switch on and isn't letting the pain switch, switch back off again. These symptoms (I have all of the ones listed here) are typical of the commonly overlapping condition, Myofascial Pain Syndrome (or MPS), but then again, it could indicate something else. If it did, that might mean that some treatment is available.

When something hurts this bad, for this long, if nothing else, it would be a jolly good idea to know that I'm not doing myself some permanent damage.

The GP did say that I couldn't have broken my hip - partly because I'm not old enough (I laughed at this backhanded compliment), but also because I wouldn't have been able to put weight on it. Oh really? Do a cursory search on Google and you'll find numerous cases like this: GP failed to spot broken hip eight times, where the wounded appear still to be walking.

It would be better to find some damage that can be fixed, because if it does turn out to be the fibromyalgia and/or Myofascial Pain Syndrome, then the pain isn't ever going to get any better and it's going to continue to resist medication. Suicide starts looking like the best effective remedy.

So, finally this week, I decided to get assertive and ask the GP again to refer me to have this specifically investigated and I was asked if I'd like it x-rayed. Yes, I would. This was done yesterday and the results, I'm told, should be available in 2 weeks (... as I've waited this long.)

English hypocrites ...

"The English like people who are rude because, being so self-effacing and hypocritical themselves, they think anyone who says or writes nasty things must be telling the truth." - The BBC, via Colin Davis.

This would explain the attitudes of numerous people.

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